Timeline

January 16, 2009                   2009!

I’m back……

I once said I will never stop this website, and I won’t, it might just take me a little longer some months to update than others! As of today this website has seen 67, 991 hits…

I will provide a brief summary of the summer and fall:

Summer: July/August:

This past summer brought a new job, one was I was not expecting, but a job I always wanted. I accepted a job as a Clinical Educator for the Operating Room at the hospital I work at. It was a new position and I’ve always wanted to teach surgery so I was excited for the challenge. It brought with it a new bought of challenges. Starting a new job is always difficult. I knew half the nurses and half the surgeons from years before when we had worked together, however time has a funny way of playing tricks on people. I had the well meaning surgeon come up and ask me “how is your son, the one that was sick?” not knowing Christopher had died. I had the new coworkers who asked me “how many children do you have?” and had to answer that question. I have the three pictures of smiling babies on my desk and have to explain “I have one in heaven, and two on earth. My oldest passed away and he sent down his brother and sister.” Each time it’s a sigh, and a little turn of the knife. Starting a new job was exciting, exhausting and painful at the same time.

This summer I got mad. I mean pissed off, furious mad at God. I was sitting in church one day, looking at Christopher’s cross, got furious and walked out. We talk about “miracles” that God does, where was mine??? I want him back.  As my minister said, “I’ve waited years for you to be angry, it’s about time!” I am lucky and blessed enough to have friends in my life that knew I was spiraling in my sadness and my pain. They contacted my husband and it was decided it was time for me to see a Pastoral Counselor. I’m not ashamed to admit it. In order to be strong in life, you must realize when you are weak and there are situations beyond one’s control when we often need help.  I am luckily enough to have friends to kick me in the but and come to that realization. It is my responsibility to be the “healthiest” mom physically and mentally to ALL of my children and my husband. As the year went on a close friend was diagnosed with breast cancer. I stopped being mad. I can’t help her if I’m mad, anger takes things away from us and doesn’t let us give what we need to in order to help others.

 

September:

Kindergarten! Virginia starts kindergarten the day after Labor Day. It was a day I had been dreading, fearing for years. Most mothers dread Kindergarten because they are having to send their babies off to school on the big yellow bus. They don’t want them to take those first few steps to freedom. I want that, I would give my arm for that. I want to send him off on that bus. I want to buy that Snoopy lunch box and pin a little corner of his security blanket in his pocket to help him get through the day. I want that because that means he would be here. He would be growing up, I would actually get to see him get on the school bus, I would actually get to see him grow up. How incredibly wonderful and blessed I would be.

So we left. We went to Ocean City. We had a great room with an extra large porch (which I knew Christopher fixed up) and we drove home in the middle of the night, with Andrew projectile vomiting, to beat the hurricane. As a surprise Friends from church collected a backpack in it with school supplies to give to a child that needed one in Christopher’s honor. Katie put a picture in the backpack for some little boy out there that’s getting Christopher’s backpack.

There is nothing else to say about the sadness of Kindergarten…….

 

Fall: Oct/Nov:

October: In October Andrew decided to take a little trip to the emergency room. I received a “911” page from daycare at work. He was jumping up and down on blocks and went flying into a corner of a wall. He cracked his head open (literally), blood spilled all over the toddler room, and they had to call the rescue squad to take him to the ER (even though he’s at a hospital based daycare, he had to take an ambulance ride to go across the parking lot). He ended up with 9 sutures down to his skull, on his forehead about an inch long, down to his eye. The sutures didn’t heal well and I ended up removing them and he is now seeing a plastic surgeon to avoid surgery. The incident about killed me.

In the ER we had to hold him down onto a papoose board while they sewed his head up. He was screaming and hysterical, and this little incident smacked me back in time again to another blond headed little boy who I use to have to hold down for procedures.  Andrew looks so much like his brother, and the only thing I could see in my head was the last time Christopher got stitches. We were in the PICU, and he had dehisced from surgery  and his abdomen was open to his liver. I could see my child’s liver. I started screaming for a skin stapler and Christopher was rushed back into surgery.

Andrew was fine after the stitches, getting a piece of pizza and falling down the steps the next night from tripping on his blanket, but for weeks I was a mess. As my husband told me, and he was right, “this was a little boy thing, and not our first trip to the ER for stitches”.  I couldn’t separate Hopkins from reality again – all roads lead back to Hopkins. I finally came to understand kids really do get stitches and it’s ok. Not all stitches pop open to the liver…

Andrew popped his head open one day before the 5 year anniversary of Christopher’s diagnosis.

December:

After 6 LONG years, 3 children, and well we all know the rest, I finished my master’s degree! I took my last class at Mason this semester, helped teach a class at Mason and finished in December!!! This degree was so bitter sweet. I had started it when I was pregnant with Christopher, and the stress of it had been a constant in my life. It had always held me to him.

People asked me how it felt to be finished, and I just say at the end of the day I did this for my kids and my husband. I did this for Joe, my best friend and cheerleader who earns half this degree. I want to always be able to take care of him as he takes care of us.

For Katie and Andrew:

One day in life, and it will inevitably come, they will find an obstacle in life they feel they can’t surpass. They will feel the mountain is too hard to climb, the distance is too far and the challenge seems impossible. When they do, I want them to remember this. I want them to know during the hardest time of their mother’s life she got this degree for them. I did this to show them their is nothing they can’t do in their life, and no obstacle is too high it can’t be overcome. I want them to remember I would feed them at 3am with one hand and type with the other to finish this degree. I did this for them. I want them to know their is nothing in life they can’t overcome and their mama did this to show them the world is theirs…

For Christopher:

Oh, Christopher, my sweet love who I dream about at night. Whose image pops in front of my face a hundred times a day. I hope I made you proud. I hope one day I can help all children with the knowledge I’ve gained. I write this with tears in my eyes. What a dichotomy this degree was. The first paper I wrote in grad school, when I was pregnant with Christopher was on stem cell research, what a foreboding predication of what my life was to become.

Oh Christopher people have moved on, even family has forgotten you, but you will always be so alive to me in my heart. When we put our Christmas tree up every year, we go put yours out. We will always love you……

January 2009

New years, always the hardest holiday of the year…. I feel another year away from him. All parents of bereaved children feel their children will be forgetten. New year’s always makes it seem another year has gone by, and their greatest fear is  this will be the year when someone forgets their child. Please, don’t ever forget them….

 

In Conclusion:

Lately Katie has been pointing to the Median Sternotomy scar that sits on my chest. (It’s a long “zipper” scar that goes half way to my neck from heart surgery). She points to it and goes “Wat dat mama?” I tell her since it looks like a zipper the doctor’s just unzipped mama, fixed her up, and zipped her back up! If only it were truly that easy to heal a broken heart…

This poem was read by Maria Shriver at  journalist Tim Russet’s funeral this summer. I thought it was appropriate for closing today with this poem:

The Little Ship

I stood watching as the little ship sailed out to sea. The setting sun tinted his white sails with a golden light, and as he disappeared from sight a voice at my side whispered, “He is gone”.

But the sea was a narrow one. On the farther shore a little band of friends had gathered to watch and wait in happy expectation. Suddenly they caught sight of the tiny sail and, at the very moment when my companion had whispered, “He is gone” a glad shout went up in joyous welcome, “Here he comes!”

 

Wednesday June 11, 2008            Angel Day 4 years later

                We love you                 

June 2, 2008

Addictions

We all have addictions in life. For some it’s booze, other’s it’s drugs or cigarettes. I have addictions my husband has accepted I will never get treatment for and has learned to accept. Those addictions are:

  1. Sex and the City
  2. the makeup counter at Nordstroms.

So, how do these addictions play into my everyday life?

  1. Sex and the City:

As the entire world is now aware, the movie is finally here! I think I have seen every episode a zillion times. I think what it has done for fashion, careers and  the independent woman is timeless – however that is another entry.   While the rest of my friends were having flirtini parties and watching the series, I was in the hospital with Christopher. Joe would tape it on Sunday night, and bring it to me on Monday.  When the series finale known ‘round the world appeared Christopher was in the PICU. I don’t know how, but somehow on the old crappy tv in the PICU we were able to tap into HBO and watch the series finale. I think it was a gift from God, because we could never get HBO back again.

Now I know it is just a movie, a silly show so unrealistic and so far away from my life (However if the Manalo Blanick people ever read this, I’m a size 6 and would like a pair of black patent leather Mary Janes and I would LOVE to meet Sarah Jessica Parker).  Everyone needs their little escape from reality, no matter how silly. I think with as hard as we all work in life we are allowed one silly thing to make us smile and laugh .So here we are, 4 years later and the movies out this week. And here my family is, 4 years later and next week is the anniversary of Christopher’s death. Seeing all the advertisements on tv about the “opening premiere” of the movie, couldn’t help but jog memories of the “closing curtain” on my life 4 years. Both simultaneous events. Again, another thing in life that causes a flashback.

 

  1. Makeup Counter at Nordstroms:
    I am a sucker for the latest blush, eyeshadow or mascara and let’s now even go down the “free gift” with purchase route because I am so there! So, after a frustrating week at my job last week, I went to feed my addiction. I bought that lipstick that made me “pop” that makeup brush to make sure the blush was smooth and the new foundation that just went Perfect with my complexion. (Of course everything is in my car to be returned tomorrow. After I come out of my perfume, lipstick and free gift haze, I realize I don’t’ need the junk or can’t afford it, and it all goes back). As I was sitting in that makeup chair having the “great new eyeshadow” applied again,Boom! I was back at Hopkins!

When we were living at the Children’s place the Lions Club would take mom’s out for a makeover day whose children were living there. They picked up two moms every month, took us to the makeup counter at Hecht’s let us get a makeover and gave us a $50 gift certificate to get something for ourselves. It was such an incredible gesture, it made us feel “normal” again, if only for an hour or two. (Oh course as soon as I got back Christopher was fluid overloaded, and  looked like the Stay Puff Marshmallow man. I purposely took my fist, slammed and broke his IV pump, opened the IV door so it would all stop  because they wouldn’t stop giving him fluids, and the day spiraled back to the PICU).

So here I am this week, anticipating yet another angel day, with addictions in tow and they all cause flashbacks. The flashbacks aren’t as bad anymore, but they still come. The elevator door opened at work the other day and I felt like I was walking out of the door into the PICU, seeing our good friend Baby Brady being rolled down the fall from his liver transplant.

Some of my closest friends want me to go with them to Blacksburg this weekend (home of the best school in the world – VA tech). I don’t want to go, I feel like in my head I am fighting you and kicking them tooth and nail and digging my claws in, like when I tell one of the kids something and they scream “no” and I  pick their little buts up and drag them down the hall. When Nick (dog) will be walking and just stop and not move (he’s kind of a dumb dog anyway) and he sinks his claws in and I have to drag him up.

I instead want to curl up in a ball and die. I want to go under the covers and live their for weeks and weeks. I want to be sad, I want to scream at the world. And yet, my closest friends are making me go on living and I am so blessed for that. How lucky I am to have people to continually pick me up, make me go on living. And so my spiral of deep dark sadness has begun with Christopher’s death just a week a way.  And so this year I am fighting. I am fighting the  sadness cloud. I am trying to fight the sadness, and realize how lucky I am to have had  Christopher for the 13 months he was here, and I am lucky. But I am tired of fighting, it’s what I have done my whole life, but still, I try to fight. I  may be a little weaker now, but I try, I won’t give up I am a mother, a wife, a co-worker, a nurse, a friend, I really don’t have the  option NOT to fight.

Postlude to an Addiction:

Four girlfriends sat in a movie theater in Blacksburg, Va watching the Sex and the City movie about friendship. They spent the weekend looking for the “Elmo loves Va Tech t-shirt” for the kids and drank bad beer and ate cheep pizza. They visited the April 2007 Memorial and were just together. They taught me it’s ok, he will never be “gone” and it made Angel Day just a little bit easier on the soul.  They gave me a blue butterfly, and for the first time in many years, I allowed myself to breath. Thank you my Homies……………….

 

 

Monday May 26, 2008                          Memorial Day

It’s Memorial Day Weekend and a piece of me is at Hopkins. I’m standing with my back against the wall, in Room  2 of the PICU. I am  watching as the doctors and nurses work valiantly to save Christopher’s life after he crashed and they are trying to get him on the vent and there are about a zillion people in the room. I am standing week against the wall, ready to just pass out, but so strong because I have to remain strong for him, I’m sitting there telling the doctors to keep going, to do what they have to do because he is Christopher and he will make it. He’s not like the other kids, he is so strong, and he is my son, and he WILL make it.

The last time he was conscious was Memorial Day weekend. His lungs were starting to have problems and he was on a machine called bi-pap (it’s a type of oxygenation mask that sits on the face and blows oxygen in). The night before he crashed he was miserable with the bipap blowing oxygen into his lungs. He was covered by a blue bair hugger ( a type of warming blanket used in surgery to help the patient maintain normothermia) and he was so uncomfortable. When Joe and I left the PICU sometime around 1:00/1:30 am to try to find somewhere to sleep for a few hours he just whimpered from the machine. We turned around as we left the room and went over and kissed him several times. We patted his head and told him how much we loved him, and how everything was going to be ok, I remember just smiling and telling him what a brave boy he was. He was almost out of Hopkins, we were having him transferred to Fairfax  Hospital in a few days and he would get better there…..and than a few hours later we got the call he crashed. The last scene of him on the bi-pap and the bair hugger is one that haunts us everyday of our life. Neither one of us can ever forgive ourselves for not staying or trying to do something to make it better at that moment it time. We will never, ever forgive ourselves for this.

I have been doing “ok” in my grieving process lately (or at least I think I am). We finished his birthday by decorating his grave, and had so many phone calls, cards, e-mails, flowers, mementos. Thank you will never be able to describe how much it meant and truly touched our souls. I think this year was harder than the others. Being the big “5” he should be riding a bike, thinking about riding the big school bus this year, keeping Katie in line. Being 5 is such a “big boy” age. We bought a cake, sang Happy Birthday and I got Thomas the Train plates to eat on. We put toys on his grave, and donated toys to the hospital. The Life with Cancer Berveament  Group I attend has been incredible. I suggested every month we donate toys in honor of the child’s birthday it would have been. So in April we donated toys to the peds oncology unit at Fairfax a 5 year old would have wanted.

Mother’s Day – I always said the best mother’s day gift I ever got was a clear chest x-ray from Christopher on my first and only mother’s day with him. I  had a nice weekend, getting to see my parents and going out to dinner with my mom, one of my best friends and her mom in Richmond for a fun girls dinner. I got some pretty cool things on mother’s day this year. A “candle” from Katie (really a baby food jar with tissue paper stuck to it and a votive candle inside. It would probably explode if we ever tried to light it because of all the glue on it). Andrew gave me a potholder with his little handprints on it, how I cherish these precious homemade gifts from my babies. So a clear chest x-ray, an explosive candle and a potholder, would more could a mother want?

This year Christopher gave me a special gift, one that I could never imagine. There has been another Hurler’s mother who lost her son, who found me. She has kept in touch with me, picked me up when I needed it and given me courage I can be a survivor. For Christopher’s birthday she made me a beautiful scarf with gold butterflies and the butterfly song I sang him. Around 3 pm on Sunday I started to get sad, the “crash” came. I should be getting three little hugs on mother’s day. Joe and I always give each other a special card from Christopher on Holidays, but I was still a little melochanlcy…and than the call came…. My special Hurler’s mom, who I had never talked to on the phone, called me. It was truly a godsend. I cried and cried. When I got off the phone Joe said “Did Christopher just call you for mother’s day?” I said yes, he did, the day was finally complete.

The past 2 months my health hasn’t been great. Flairs of asthma, which means steroids and more meds. I got a horrible infection in the bone behind my ear (mastoiditis) causing my neck and shoulder to go numb, which means more steroids, huge antibiotics and my heart to wack out on me. I’ve been having bouts of tachycardia again which means more tests, more meds, and more docs appointments. I was suppose to have walked in Race for the Cure on Mother’s Day but was too sick from the steroids.  The heat this time of year kills me, so I am playing around with inhalers and meds and just taking it as it comes. My heart had been doing fine for a while, smooth sailing and no problems. I wonder if somehow the underlying stress and sadness between Christopher’s birthday and death has caused problems I didn’t realize.

This memorial day weekend I spent with another screaming child. One that was out of control and threw himself down every chance he got just to scream. Only this time it was the old childhood right of passage of teething – getting his incisors in. A “normal” memorial day for childhood.  And so as strong as I tend to be I feel myself starting the old spiral downward with Christopher’s death approaching. The sadness cloud  of his death is slowly, slowly, trying to creep in over my sunshine, and at points it succeeds.

Speaking of sunshine I use to sing “You are my sunshine” to Christopher at night when he was in the hospital. I’d lay with him in the crib and rub his little blond hair.  I taught it to Katie and now it’s her favorite song… everyday is still a daily battle, the clouds are always there, ready to overtake the sunshine and cause my world to break in half again….

 

Thursday April 24, 2008                 **Entry 1, 11:30 am

Happy 5th Birthday Angel Christopher

We miss you so much!

 

The weeks leading up to a child’s birthday are ones filled with excitement and anticipation. What type of party to have, what to put in the goodie bags, and what present to get to your child to smile and giggle with delight. However, for us, the weeks leading up to Christopher’s birthday are filled with a sad anticipation, a sharp  pain that reminds us what we don’t have and an empty hole that no matter how hard can’t be filled.

I think about this website all the time. Whenever I sit down to write a child gets pink eye, a dog gets sick or something crashes. So I write my ideas down on scraps of paper and wait a few months till the house is quiet and I can write them down (like today). We almost lost our precious little Beagle, Bell. She was in and out of the doggie ICU since Feb. Long story short we took her to another vet that saved her life. We were devastated when Bell was sick, this was “Christopher’s puppy” and the thought of loosing her crushed us. We fought and fought to keep her alive, much like we did Christopher those many months ago. The pain of nursing a loved one proved just crushing for Joe and I and all we could think of was every moment we spent Nursing Christopher back to health

I spent the beginning of the year angry. Not raging, or hostile, just angry and not understanding. I wanted my miracle. Nothing more, nothing less, I wanted my miracle. Now I know all children are a miracle, etc.., etc… but I wanted MY miracle, the one where the miracle baby survived, everybody else around us had one, why couldn’t we. We know he may have been disabled (or maybe not) but who better to take care of a disabled special child than Joe and I. We know there would have been obstacles, but we would have been fine, especially us of all people . Everybody says “God does things for a reason” and I don’t know if I believe that. Some days I do, some days I don’t. I think Christopher getting sick and dying just happened. I use to try to rationalize  things by saying if I have to live in pain for the rest of my life so he doesn’t have to, than so be it, I am fine. This still holds true, but I am tired, and I can’t rationalize it anymore. I just simply don’t understand.

I have looked at certain events in our life lately, and none of them would have happened if he lived.  Katie and Andrew would have been our, no matter what, they were just always meant to be ours, I always knew there were three little babies waiting for us. Howver, Joe wouldn’t have had his own business, and I wouldn’t be in grad school (not that i want to be there now anyway). It’s the fork that divided in the road, and the path that we were forced to take. We would throw it away in a second to go back to the other fork that meant having Christopher.

Talking to Strangers

I find myself telling random people I have a child that died. Somehow in my mind I think they may be the “one”. The magical one that can snap their fingers and bring him back.  Stranger: ” Oh your baby died, well here, let me snap my fingers and let him reapper”. I don’t do this as much as I use to, and the words slip out before I know what I’ve said.

Example:

-Nice Metro lady who gave up her seat for Katie and I last week. I tell Metro lady ” We’re going downtown to the Smithsonian to see the butterfly exhibit, you see my son died and his symbol to us is the butterfly.” Metro ladies mouth hangs open, Damn, I did it again, I told another random stranger my child died.

Old College Roomate I ran into after 13 years at Rio Grande Mexican Restaurant with kids, First thing I say “We have another son, he died, he would have been 5”. Why was this the first thing I said?

-Pulmonologist office last week:

Me:  “My asthma is horrible, my chest is so tight I can hardly breath, I’m a little stressed also, my son died he would have been 5 next week.”

Pulmonologist: Starts Crying, “Oh my god, that is the saddest thing I have ever heard.” So I give her a hug, rub her arm, and tell her it’s ok. Could we please review my medical history again and decide what to do about the asthma. (After waiting for almost 2 hours to be seen, and having to console the dr. I feel I should have gotten my co-pay back.) ?

I think I am still “looking”. Looking for that miracle, for him to still come home.  To find that one magical person that can make it all happen  and bring him home. I think at night how nice it would be to hold all three of my babies together, and I just sigh because I know it will never happen.

A Katie Sandwich

My favorite part of the entire day is picking the kids up from school. Nothing in the world beats the feeling of picking them up and having them come running across the classroom to leap into your arms and give you a kiss. It is the most precious kiss in the world. I often watch them before I pick them up, so they don’t see me. As I was watching Katie on the “big playground” the other day I saw kids who were Christopher’s classmates outside with her. I often tell her how lucky she is to be a “Katie Sandwich” to have a little brother and an angel big brother with her in the middle. It hit me than how cute it would have been if Christopher was alive and they were on the same playground. She and Andrew were on the “little playground” together and when she moved classrooms and went to the big playground she would have had another brother waiting there to play with her. How sad it made me to see Christopher’s classmates running around after her, only he wasn’t there to tackle his sister. Something just didn’t seem right in that scenario, where was her big brother? He should be on the playground with her.

Katie’s favorite song in the world in “Happy Birthday”. Every day is somebody’s birthday. It’s usually blankie’s birthday, or doll babies birthday, it depends on the mood of the day. But today is angel Christopher’s birthday, Katie’s “angel brother’s” birthday. So for the last few days she has been singing “Happy Birthday Kist-pher”, than going “he’s up there mama, he’s up there” as she points to the sky.

There is so much I ratiolozize out with them in regards to Christopher and the one thing I have come to peace is they never had to see him suffer. They never saw him vomit or loose his hair or watch him die. I have met so many parents who have the pain of their child that died, than the pain of the remaining siblings in mourning that child. Katie and Andrew will see the pictures, see the smiles and never have to know the horror he went through. When I told this new theory to Joe, he told me this was wonderful, however they never got to know him either. Once again, trying to find a rationalization.

Hopkins

I still think about the Horror of Hopkins all the time. The facility was truly hell on earth. I don’t dream of ventilators or PICU smells as much as I use to, but it’s still there. I can look back and see that first year after we lost him how we couldn’t even get a breath out to talk without feeling like we were going to suffocate. That is gone, the pain is just now a constant numbing. I think about our friends, our doctors our nurses from Hopkins. I even google them to see if I can find them to see how they are doing, to still hold onto that connection. Our local Life with Cancer organization has started a Parent Bereavement Group and it is a wonderful thing. Once a month we come together, parents who lost a child. We celebrate our children’s lives, we grieve their pain, and we give each other strength in knowing we are not alone and we will survive. This month I would have brought cupcakes into Christopher’s class to celebrate his birthday, so instead I brought cupcakes in to the Parent Bereavement group to celebrate his life.

 

….The day is ticking by and I must run to decorate his grave for his birthday. I will finish this entry tonight….

 

April 16, 2008

God bless VA TECH

1 year later……..

 

Sunday January 6, 2008

Another New Year

Another 410 days

Another year has begun. I dread New Year’s day every year now. 2008 seems farther away than 2007 to the year 2004; the last time I got to hold Christopher in my arms. In 2007 I could say it’s been 3 years, this year in 2008 I have to say it’s been 4 years since I  last kissed my sweet boy. New Years Day, just another reminder of yet another year that’s going to go by without him.

The best Christmas presents I received this year were the Christmas Cards that were addressed to “Paige, Joe, Katie, Andrew and Angel Christopher”.  I have a friend who address every card sent to this house as “Mr. and Mrs. Joseph & Paige Migliozzi, Angel Christopher Migliozzi , Miss Katie & Master Andrew Migliozzi”. And in that second it takes her to write Christopher’s name she is saying “I remember”. She is saying “I know you have another son you love”. So thank you Alli, you never forget him and I am blessed to have you!  I get so tired of hearing “At least you’re lucky to have Katie and Andrew!”. Trust me, if anybody in this world knows how lucky they are to have children, it is me, you don’t need to remind me. All children are a precious gift given to us for only a short time.

Any day now, and I don’t know which day exactly, Andrew will have lived longer than 410 days, the number of days Christopher lived. He is 13.5 months, the same age Christopher was when he died. Andrew is finally starting to grow a little hair, with little wisps around his ears like his brother had, and Joe even joked this weekend that he needed to trim around the ears like his brother. With the passing of 410 days, there will be no more days to compare. No more first birthdays, no more first Christmas, no more childhood markers of that first year of life. 410 days was all the time I got with him, so short, so sad, so happy. I don’t know what else to say about 410 days, I just thank God for being able to watch Katie and Andrew grow up.

Go ahead and mention my child, the one that died, you know.
Don’t worry about hurting me further, the depth of my pain doesn’t show.
Don’t worry about making me cry, I’m already crying inside.
Help me to heal by releasing the tears that I’m trying to hide.
I’m hurt when you just keep silent, pretending he didn’t exist.
I’d rather you’d mention my child, knowing that he has been missed.
You asked me how I’m doing, I say “pretty good” or “fine”,
but healing is something on-going, I feel like it will take a lifetime.

~ Elizabeth Dent ~

 

Friday December 14, 2007

Pizza at Christmas

I feel like a pizza at Christmas.

 

1 part UGH!!!

The typical “adult stress”. Making sure everyone has their gift, balancing the budget, getting the cards out, mailing a zillion things, etc… etc… everyone knows what I mean! I always try to make this part the smallest, and make sure we all stay focused on the blessings God has given us…

1 part WOW!!!

I try to remember to look at Christmas through a child’s eyes (although Santa this year is a very traumatic experience). I love the beauty of the twinkling lights and all the decorations, truly breathtaking. I love the sophistication of  winter clothes, gingerbread martinis, the chocolates, the smiles with friends, the parties and celebrations, and did I mention the gingerbread martinis? A time of just reflecting and remembering what’s important in life, of anticipating Katie and Andrew’s smiles and giggles on Christmas day as Katie rips open the presents and Andrew eats the paper. I try to make this the largest piece.

and  the last part:

1 part Tears:

This piece can sometimes be the most suffocating part of my day, or somedays a piece so small I don’t realize it (this is usually on the days I’m pinning a two year old down in the grocery store ripping chocolate out of her hands and trying to put her shoes back on). This piece sees three little stockings hung by the fireplace, knowing only two will be filled and loved on Christmas day. The third stocking will hold it’s customary Elmo on Christmas, knowing Joe and I will take this Elmo to the cemetery on Christmas day, We will leave the kids with their grandparents for an hour and go to the cemetery to give Christopher his gift, and put it under the tree we will take out and decorate for him this weekend.

This piece is thankful to pull out the Christmas stuffed animals for the kids, and not realize the big huge reindeer has a tag around its neck that says “Christopher”. (A gift given to him at the hospital when we were there for ERT around Christmas). I don’t know what I am going to do when their are no more things to find of his, no more things that pop up in boxes or closets when I least expect it. I pray there will always be something there…

This piece is thankful for the Parent Bereavement Group that has started through Life with Cancer at the hospital. For meeting other parents and hearing about their beautiful angels, and knowing I am not alone. For coming out from the meeting last night to hear “It’s a Wonderful World” by Louis Armstrong when I turned my car on, one of my “Christopher Songs”. I use to listen to this song in the hospital, just knowing Christopher would make it to walk my mom down the aisle at my sister’s wedding. and he and Joe and I would dance to this song because he would cured.

This piece is thankful to come home and find e-mails from a good friend’s daughter (who I am very proud of) who is doing a project on Hurler’s syndrome, and to find e-mails from other Hurler’s families I can hopefully help…

This piece hurts, it sheds tears, and only emphasizes a broken heart this time of year…

This piece knows “he is here”, only I wish “he was here”….

…..Coming Soon, Another 410 days…..

Tuesday November 13, 2007

A year ago today I was admitted to the hospital for nausea, vomiting and dehydration. That was because Andrew was on his way, and tomorrow will be his first birthday! He is a precious boy, and has completed our family. He and his sister love each other so, so, much and have their own secret language where they just laugh at each other. I see so much of Christopher in both my children. Andrew has his “Virginia Tech Quarterback” build and blond hair. Katie has his eyes that sparkle and say “look out world”. She gets sweeter every day, and just saying her name makes me smile. We are so blessed by our three precious children.

We had a few people over for pizza and cake to celebrate  Andrew’s birthday (and watch for the first time in 32 years Tech beat FSU – one for the baby books!). As I was smiling and laughing at my sweet boy crawl around in his big floppy 1st Birthday hat, a strange thing happened, I was “back at Hopkins”. When a person lives in a hospital for six months watching their child go through surgery after surgery, and procedure after procedure, it induces a type of post-traumatic stress that creeps in on occasions when you aren’t expecting it. Flashbacks to the day, reminders of the event. I couldn’t help but remember another little boy who spent his first birthday fluid overloaded in the PICU. I’ve always felt first birthdays were such a special, precious marker, it truly is an entrance into childhood and life. Pretty soon, Andrew, like Katie, will surpass Christopher for the amount of months he lived and their will be no more anniversaries to compare to.

Joe had extensive sinus surgery in the beginning of October, and again in the days leading up to his surgery, “I was back at Hopkins”. We figured up (between us and the kids) we have been through over 16 surgeries (doesn’t count numerous cardiac procedures I have had) in our 9.5 years of marriage. Having a procedure or surgery for us or the kids, really isn’t a big deal, we’re use to it by now. It truly is just another day. Joe’s surgery was in a beautiful outpatient center, he was only under anesthesia for 2 hours, and everything went fine. However, I felt like I was back at Hopkins with Christopher, sitting on the floor, outside the OR’s so the minute the OR doors swung open on his way to recovery or PICU I would be right there. I would take Christopher back into the OR for all his surgeries, help anesthesia put him to sleep (reminding them I was an OR nurse and this was MY child), and informing the anesthesia personnel the right size endotracheal tube to use. I’d go take my mask and gown off, and go sit on the floor, by a nasty old trashcan, waiting for the doors to fly open. So, in a heartbeat, in just half a second, I can be “back at Hopkins”.  The memories will come like a ton of bricks, no warning, no notice and they literally cause me to feel suffocated and physically sick. In the days leading up to Joe’s surgery I just felt physically ill.  There is just nothing else to do in these situations, but ride out yet another wave of grief, and continue on…. I have to for my children and my husband. I really don’t have the luxury of just sitting and processing – I have to keep on moving.

This has been a crazy fall, filled with birthday parties, baby showers for friends, weddings, Va. Tech football, work, graduate school and more work.  Katie and Andrew have a beautiful spirit that permeates our home and fills our lives with happiness….  We smile and laugh every day, and no longer feel guilty for it – we “live” life, even though their is always a cloud that pokes around the sunshine.  For all of this, I am so, so, grateful, for in just a second at any time of my day I can be “back at Hopkins”.

I sometimes wonder if I should stop this website, since I don’t get to update as much as I would like, but I think I may keep it up forever because the death of a child never ends. Their is no “time heals all wounds,” their is no happy ending. He’s been gone for three and a half years, yet the pain is as fresh and raw as three and a half seconds ago. Time is irrelevant when you loose your heart…

Happy 1st Birthday to my beautiful boy! Thank you Christopher for sending down such beautiful children for us to watch grow up, I am so proud of all three of you and honored to be your mother.

Wendesday October 17, 2007

“D” day, 4 years later

Birthdays, Beaches, Buses and Butterflies

 

Birthdays -Thankfully fall has finally arrived. Ever since July became Katie’s birthday “month” she walks around the house everyday singing, “Happy Birthday to me”. Another birthday passed for myself and Joe, which meant another occasion without Christopher. We always try to give the other person a card “from” Christopher. Just a reminder to the other person our boy still loves us…

Beaches & Buses – The first week of September, the week of Labor Day, we went to the beach. Packing I kept feeling like I was forgetting something, something didn’t feel right, I felt like I was missing something. I remember I felt this way last year also. Packing the kids up, I felt like I was forgetting Christopher, where was that other child I was suppose to pack for? The mom instincts don’t go away, they are still there, longing for the missing child. The first week of September is also the day school starts in Virginia. Looking at the school buses I couldn’t help but think next year my Christopher would be riding the bus, off to kindergarten. I could just see him at the bus stop, little Snoopy lunch box in hand, but I will never have that precious memory with him. I told Joe, next year on the first day of school, I can’t be here. I can’t see all the other kids getting on the bus, knowing Christopher should be with them. I need to be somewhere, far, far, away, where I won’t have to see a reminder of what I don’t have.

 

On my day off last week I took the kids to the cemetery to decorate Christopher’s grave for Halloween (I’m pretty sure this is not what most moms do with their kids on their days off of work). I had a Snoopy pumpkin doll to put on Christopher’s grave. Katie dragged the big stuffed Snoopy up the hill, put it exactly on top of her brother’s grave (without any instructions from me), turned around and went back to the car. I think my mouth hung open in astonishment the rest of the day. I just knew I would have to wrangle the Snoopy out of her arms, since everything these days is “mine”  and “Katies” and their would be drama. But she put it exactly where it belonged and was on her merry way.

 

I have always been worried about how his death would effect Andrew and Katie. I just want them all to know how special and loved each one is. I never wanted his death to overshadow their lives, only bring their lives full of light. For the first time ever, I felt peace about how Christopher would be incorporated in Andrew and Katie’s life.  Katie just knew what to do with the doll, it belonged to her brother, and that was that. The rest of the day was spent shopping for a friends wedding and meeting Joe for lunch, with lots of giggles and diaper changes along the way. Just a “normal” day for our family. At night when Katie says her “God blesses” she always points to the sky and says “agl kisper” (angel christopher).”

Butterflies –

Joe was in one of his best friend’s wedding this past weekend. A beautiful wedding overlooking the gorgeous mountains of Virginia. As the bride and groom were saying their vows a beautiful white butterfly flew over “Uncle Chris” and his new bride, and their was no doubt that the angels were watching from heaven. My heart aches I will never get to see my Christopher get married and have children. A tear escaped at that moment, my heart so full of happiness to see our wonderful friend so happy, and a tear of sadness for my Christopher to never know the love of a spouse. Two parallel universes I balance all the time.

And so this brings me to “D” ( Diagnosis) day, the day Christopher was diagnosed, four years ago today and our life changed forever.

I don’t know what to even say, but all we have in life, are the seconds it is made of. All it took was one second, and our life was changed forever. This day will always bring with it a day we stop and catch our breaths, and remember our lives “before” and “after”.

August 15, 2007

Reflections on “3”

This update will have reflections from summer

It has taken me over two months to write this update. Life has been crazy between Andrew teething, and having to call the Fire Dept to come get Katie unstuck from the stair banister (somehow in her infinite wisdom as a 2 year old, she got her head stuck between the stair spindels). This update will be a compilation of events, thoughts and memories that are broken down into categories.

 

 I have always been fascinated by the number “3”. I don’t know why. I just knew I would always have 3 children, and 3 college degrees by the time I was 33, I only have 3 classes left to go until degree number 3.Perhaps growing up with an unknown fate of my cardiac condition, “33” became my “scary” age. We all have it, the age where we sit back and reflect on where we have been in life and where we are going. “3” has always been my number. I still have a year left before I hit my “scary” age.

Christopher’s angel day (June 11) came and went like it usually does. The weeks between April (Christopher’s birthday) to his Angel Day in June are ones spent in agonizing pain with memories flooding every crevice of my life. I spent the weeks leading up to angel day in such a frenzy I got myself physically sick. I ended up in Urgent care with a fever, vomiting, and lethargy, this pattern repeats itself every year. And than the day comes…and there is peace…. A kind of stillness, a day so surreal it leaves me paralyzed. This year I dropped the kids off at school and went to the cemetery, I came home and took a nap, there is just no other way to get through it. We are so thankful for the phone calls, e-mails, and cards.  To our friends, you will never know how incredibly grateful we feel that you remembered. There are not enough words to express our gratitude and how much your kindness truly deeply touches our hearts. We know people are praying for us, we can feel the prayers,  your prayers and love continue to wrap us in a blanket of love to help us get through the day.

On June 17, Father’s Day, we had Andrew baptized. I didn’t realize until a few days before that was the day we buried Christopher. So three years to the day we buried our son, we baptized our third child.Three years ago I was standing at the exact same alter giving my son’s eulogy. As I was driving home a few days before the baptism and realized this, I freaked out. I didn’t know if I could go through with having the baptism on the same day. We went ahead with the baptism and it beautiful. As a good friend said “July 17 will now be the day we gave both our boys to God, one to go live with him, and the other to live in his heart.” Those words gave me peace, and I knew the day was handcrafted by Christopher.

The month of July was filled with parties with friends for Katie’s second birthday, and a surprise party/birthday party for our good friend Brian and Katie. For two weekends our house was filled with children’s laughter from the moonbounce, chocolate cake smeared on floors, and I am still finding the occasional piece of glitter or deflated balloon in a corner. It was truly a blessed month with having friends in our home to smile and laugh with, it’s what makes this crazy world seem not so crazy.

Signs

So life continues, however it is always tinged with a certain dark cloud, some days darker than other. In the 8 years I have studied and worked at Fairfax Hospital I have never visited the chapel. A few weeks ago I was having a particular difficult time and as I walked passed the chapel I opened the door and went in. The pain in my heart was too heavy, and I simply didn’t know what to do. I asked God to help me, to somehow lift this pain and help me because it is crushing me. That afternoon I was in Employee Health and I got a sign from Christopher. (I ran over my ankle with a cart of sterile surgical instruments and it wouldn’t stop bleeding – basically, I’m a clutz). As the nurse was irrigating and bandaging my foot the paper towel dispenser across the room started shooting paper towels out.  No one was standing by the paper towel dispenser, and you see this was no ordinary paper towel dispenser. This was Christopher’s favorite type of paper towel dispenser. He was a simple boy, didn’t need a lot of fancy toys, just a paper towel dispenser we use to play with at the Children’s House. It had a sensor in front of it and Joe and I would run to it and make towels shoot out and he would laugh and laugh. The nurses taking care of my foot started laughing there must be a ghost in the room, but I knew it was an angel in the room. If I can only remember the lesson Christopher taught me that day, I would be so much better. To turn my pain over to God, However, I have a mother’s heart that aches, and the head and the heart don’t always line up.

VCU

I had the honor of giving a lecture at VCU in Richmond a few weeks ago. I lectured on being a parent of a child with a chronic illness. It felt so good to do this. I really feel this is my calling. To help parents of children with chronic and terminal illness, their is so much work that needs to be done for these families. We can do so much better to help support these families.

 Life Continues with Constant Reminders

There are always constant reminders of Hopkins, both the good and the bad.  Every day something pops into our life, a reminder:

  • E-Mail: Cleaning out my e-mail box the other day I found the original e-mail announcing his diagnosis to our friends. It startled me to read my words again. We were so full of hope. In many ways, we still have hope others will never hurt again from this disease.
  • Laundry: I was grabbing the stain stick off the laundry shelf last week to get another impossible stain off of Katie’s shirt, and their it was on the top of the stain stick: “Migliozzi Room 302”. This was what we had in the Children’s House. It took my breath away to read it, a million little reminders, in some ways, I hope they never go away and I feel blessed to have them.
  • Teething: Andrew is following in his big sis and brothers footsteps as a bad teether. The past few weeks have been filled with uncontrollable crying, fussiness, vomiting, fevers and agony as the first few little teeth pop through on the bottom. When I went to pick him up from school last week the first thing I heard when I came in the door was, “Christopher came to check on his little brother”. A big yellow butterfly had flown past Andrew’s window when he was crying. Big brother was checking up on him from heaven. The kids have a bib that reads “I love my big brother”. I hope they knew how special the three of them are as siblings to have each other.
  • Christopher’s Girlfriends: On the day of Katie’s birthday party, I ran out to get the mail and opened a card. It was from one of Christopher’s girlfriends Nurse Jen. It was a beautiful card, so incredibly filled with love, and once again Christopher had popped up at his siblings big events to let us know, “he’s still here, everything is ok.”

The Elephant in the Room

Last, but certainly not least, I must talk about the elephant in the room. Lately there have been situations where I have felt like the “elephant in the room”. I got the old “how many children do you have question” and it provides an akward silence, downward stair and sometimes people just not talking to me. I understand, I truly do that it is starling to here when a child has passed away. However,  because something is uncomfortable, don’t ignore someone, it only hurts worse. The last few weeks I have been struggling with just a physical and emotional exhaustion unlike any I’ve felt before. I’ve been constantly sick since Andrew’s been born, and I feel like a stick bending in half. However, I have realized for every “elephant” moment, there are ten times as many angel moments in my life.

I was sent a book on grief by another Hurler’s mom that couldn’t have come at a more appropriate time. She reached out to me, found me and sent me her book. A very special artist is sending me a necklace with the butterfly phrase on it. And as always, there are the people in my life God and Christopher have placed. My husband is awesome, and I love him more everyday than the day before. The best part of my day is picking Katie up from school and having her smile and run up to me – it is the best smile in the world. She has Christopher’s sparkle in her eyes. The sparkle that says she will take on the world. Andrew looks so much like his brother, it takes my breath away. He can even projectile vomit and keep smiling the same way Christopher did. All three of them are truly God’s greatest. As always our friends have been such influential people in our lives. they still hold me and let me cry, slip me a card on a day when I need and are just there. I do not know why Christopher died, but I know he put people in our path to help us along.

I am in the process of “reevaluating” my life. The past few years have been a physical and mental mountain to climb, but we keep climbing. We stumble, we are tired. We want to stop, yet we still climb. I hope somewhere along the way we help other people, as of today this website has received 63, 276 hits. I simply don’t know what to do sometimes, the only thing I can do is pray, and when I do, my angel sends me a sign he is still with me.

A poem one of my angel friends sent me I dedicate to Andrew and Kate:

A Different Child
poem by Pandora MacMillian

People notice
There’s a special glow around you.

You grow
Surrounded by love,
Never doubting you are wanted;
Only look at the pride and joy
In your mother and father’s eyes.

And if sometimes
Between the smiles
There’s a trace of tears,
One day
You’ll understand.

You’ll understand
There was once another child
A different child
Who was in their hopes and dreams.

That child will never outgrow the baby clothes
That child will never keep them up at night
In fact, that child will never be any trouble at all.

Except sometimes, in a silent moment,
When mother and father miss so much
That different child.

May hope and love wrap you warmly
And may you learn the lesson forever
How infinitely precious
How infinitely fragile
Is this life on earth.

One day, as a young man or woman
You may see another mother’s tears
Another father’s silent grief
Then you, and you alone
Will understand
And offer the greatest comfort.

When all hope seems lost,
You will tell them
With great compassion,
“I know how you feel.
I’m here
Because my mother tried again.”
Sunday June 17, 2007 – Father’s Day

A little brother is baptized

 

3 years ago on this day we buried Christopher

Monday June 11, 2007 Angel Day, Three Years Later

3 Years an Angel

We miss you.

_____________________________________________________________________________________________________________________
Monday May 7, 2007

Reflections from Christopher’s Birthday and the Tragedy at Virginia Tech

How do April Showers bring May Flowers?

I think about this website all the time. I sit down to write on a weekly basis and every time I do a dog barks, a baby cries or something breaks and I must go running. So I hope I have a few minutes to actually complete some thoughts.

The month of April started  out with an unexpected pain upon finding out a close and beloved friend was diagnosed with a very serious illness. These friends are angels in our lives, and our hearts are truly broken with them. They were there for us, and  we will be there for them, and we will always hold onto Hope together. There is always a miracle, and we will never give up, ever.

The Tragedy of Virginia Tech……………..

On April 16 I was in the middle of teaching CPR when Joe paged me. Within a minute he paged me again, and I immediately knew something was wrong. I thought one of the kids must be sick, and was stunned when he told me the news there had been a shooting at Norris Hall, nobody knew what happened, little did we know the devastation that was to follow. This tragedy has just devastated us, for days we couldn’t speak, we just walked around like zombies. Phone calls and e-mails were non stop with friends checking up on each other just to make sure nobody was in Blacksburg we knew, trying to find out if our sorority on campus was ok, or if anybody had been down there for a visit and gotten caught up on this.

This hit close to home on so many levels, my sister and I both lived in the dorm where the shootings took place. Most of Joe’s Engineering classes were in Norris, and Joe’s old roomate had the professors that were killed. Another close friend who is a professor down there taught the shooter, and he and his wife have been present at many of the funerals. She sends us e-mails telling us of the real devastation that has happened in Blacksburg. Kids that were killed were kids from the high school my children will attend, and what’s worse, the killer lived about 5 miles away. Was he standing next to me one day when I was at the grocery store with my babies? Did we go to his parents dry cleaners? So many questions. The Virginia Tech tragedy was, and is this area’s 9/11. EVERY single person knows someone who was either killed or affected in some way.  One of the victim’s is buried where Christopher is. I plan on going out there this week and placing a big ribbon and note to her parents.

To everyone who has seen this website, they see how devoted we are to the school. Our cats are Hokie and Pokie, our babies wearing the t-shirts and jerseys, it was/is our “safe place.” It is our piece of paradise that is filled with hopes and dreams.  Anything good that has happened in my life has come from that school and town. My husband, my friends, it is our own little piece of heaven. I pray when I am a grandma I am baking cookies in the shape of the Hokie Bird and taking them down to the grandkids on football weekends. And than once again our world was shattered and crushed. The only consistency we had in our lives, through all our heartaache and pain the past few years had been torn apart.

Our beloved school that should be known for doing the “Hokie Pokie” at football games was splashed across the world. It will forever be known where the worst massacre in America took place. I have a big maroon, orange and white ribbon tied to a tree in my front yard, with a VT flag underneath. The pain is so raw, it may just stay there forever at this point. This tragedy, shook the foundation we had tried so hard to build after Christopher’s death. It reminded us, we can loose everything we love in just a second. Our foundation was shattered again….

On the day I graduated from college, it was freezing outside and Joe bought my parents and sister a stadium blanket to huddle under. That’s Blacksburg, it could be snowing one day, and the next you could be playing frisbee on the drillfield. When Christopher was in the hospital I slept under that blanket every night. It was one of the few things I brought from home. That blanket gave me hopes and dreams for Christopher. At night I would dream of taking him to his first football game. It was one of my goals. I had visions of him riding on Joe’s shoulders into the stadium, I than would know life would be ok…….

We went into Christopher’s birthday with a numbness that felt surreal, the numbness and haze of the week brought with it a peace that allowed us to function. The same week Katie was getting in her molars, and Andrew ended up in the ER lethargic from a horrible GI virus. On his birthday we went out at noon to put out balloons and toys, I cried, and than we had to go, the kids were in the car. When we got home we sang happy birthday and had chocolate ice cream cake, Katie’s favorite. She’s on a hunger strike and will only eat ice cream, cheese and cheerios. We got a Maggie Moos cake. Maggie Moos brought Ice Cream cake to the Children’s House every week, I thought it was appropriate.

So how do we come upon May flowers after April’s horrible showers?

 

-We have beautiful flowers, they are named Katie and Andrew and their brother shines down on them every day.

-We have seen friends from Tech the past few weeks to celebrate just being friends for so long and watching each other’s children play as we kicked back a few beers and good memories. We had a baby shower to welcome a miracle baby.

-We go to Easter Egg Hunts and birthday parties, we have learned to not feel guilty for living.

-We send our friends we know who are hurting prayers, and care packages and most importantly love.

-We look for signs from “above”, from where the “April showers” come from. I was having a particularly bad day in April, one where I cried and cried, I missed Christopher so much. The doorbell rang and there was a package from an angel friend who I had never met, sending me a letter, letting me know everything would be ok. It came at the exact second in time when I needed it most.

-We forgive people for the insensitive comments that we still continue to hear, that cut us to our soul. They know not, no one means harm.  People do not realize, although he will be dead three years next month, in our hearts it was three seconds ago.

-We stand just as grateful to the friends that remembered his birthday. We are thankful for the people that continues to realize we are hurting and are there to talk and help us figure things out.

-We pray the article that was written in the Washington Post reached someone, somewhere on a higher level, to help them in their time of need.

-I met a lady that sells beautiful jewelry to help cancer patients. It reminds me there is still goodness and love in the hearts of so many people. I can not wait for my children to have the chance to meet all the wonderful people their are in life.

-When we go out to the cemetery after church and Katie starts dancing on Christopher’s headstone in her little Mary Jane’s (she loves to hear the clicking sound) we smile knowing how blessed we are, knowing the angels are smiling down.

In Conclusion:

Over the years, people who didn’t go to Tech or where from “these parts” often asked me what a Hokie was. Rumors were it was a castrated turkey (probably something somebody from UVA made up). I could never really explain, I just smiled. From now on when people ask me what a Hokie is this is what I will say:

What is a Hokie?

-A Hokie is the name of a Virginia Tech alumni’s cat or dog.

-A Hokie is someone who knows the months between August – December every year is really the season of “Beemer Ball” and is devoted to tailgating on Saturdays.

-A Hokie knows a good beer.

-A Hokie brings you a homemade meal when you are in the hospital with your dying child. They stay with you, and hold your hand and give you a hug.

-A Hokie sends you a care package of food, and cards of support when you are fighting for your child’s life.

-A Hokie is in your wedding doing the Hokie Pokie.

-A Hokie is a pallbearer at your child’s funeral. Even though a Hokie may not have seen you for many years, they will be there for you, at the worst time of your life, and you will feel their love. They will NEVER leave your side.

-A Hokie will continue to love this beautiful university despite the tragedy and sadness that has come from it. They know Blacksburg is a piece of heaven, and a place of hope.

As Nikki Giovanni, University Distinguished Professor, poet, activist said at the memorial the day after the shooting:

“We will continue to invent the future through our blood and tears and through all our sadness…. We will prevail…. “

 

Tuesday April 24, 2007

Happy 4th Birthday Christopher

God Bless Virginia Tech

 

April 2007

So much has happened in the past few months, I will start off one by one.

Katie and Andrew:

I went back to work in February, and am working a few days a week and still taking the occasional graduate class. Andrew and Katie continue to be the light of our lives and make us smile everyday. At 5 months Andrew has just started to flip to his stomach and I wouldn’t be surprised if he’s crawling in a month or two! Katie gets sweeter everyday and at 21 months can say her alphabet to “f”, and her numbers to “7”. She is acting more like a big sister everyday and will now bring Andrew his bottle when he cries (sticking it his eyes after taking a sip) or will throw a toy at him, thinking she is helping him. The two will look at each other and just laugh and giggle and I know they are destined to become become friends.

Washington Post Article

As you can see from the previous entry, I was published in the Washington Post. I had NO idea they were going to publish this, or else I would have said something about transplant or Hurler’s in the article. However, I am so glad I did this, the website had 2,000 hits in less than a week. Hopefully it raised awareness about the disease.

————————————————————————————–
Published in the Washington Post  Tuesday April 10, 2007

RANDOM ACTS

Tuesday, April 10, 2007; Page B03

There are so many times in life when it seems almost impossible to know what is the right thing to do. But when someone is in pain, the right path becomes so clear that we seem to have a moral obligation to take it. Here are two people who did just that.

Caring for the Exhausted

Paige R. Migliozzi with her son Christopher, who was in the pediatric intensive care unit for many months. (Courtesy Of Paige R. Migliozzi)

It was another one of those nights. Another “crisis” for my son in the pediatric intensive care unit. Things were tense and scary. He had been an inpatient for six months. I was exhausted, clutching my cellphone and frantically calling family members every few minutes.

Stretchers were lined up against the corridor walls, ready for the patients who would go into surgery the next morning. I was exhausted and sad. One of the cold, black stretchers looked like a bed at the Ritz. I lay down, cellphone in hand, and stared at the stars painted on the walls.

A lone janitor came by, sweeping the floors.

“Ma’am, I can’t let you sleep like that. It’s dirty,” he said.

“Great,” I thought. “I’m going to get kicked off my stretcher and end up wandering the halls.”

Then the janitor brought over two white sheets, put one under me and one on top, and walked away. I remember looking at him through bleary eyes and thanking him as he departed. Does that janitor know what an impact he made in my life? He took care of me when I couldn’t; he went out of his way to help a hurting mother fighting for her child’s life.

My son died a few weeks later. He was only 13 months old. I hope God blesses the janitor for his good heart and soul.

 

— Paige Migliozzi, Centreville

Editor’s note: To read more about Paige Migliozzi and her son Christopher, go to http://www.christopherjoseph.com

January 28, 2007

I finally got to go out for a few blissful hours this week with a very close girlfriend. After a few green apple martini’s we came to the conclusion I have not accepted Christopher’s death. She is right, I have not accepted his death. Now, I know he is gone, I know he will never be on earth again. I have studied medicine and science my entire life, I know what happens when people die.

There is still a part of me that expects the doorbell to ring and him to be standing there. To be able to hug ALL my children together, just once, all three of them in my arms. A dream come true I will never, ever, have. I hope people realize how blessed they are when they can hug their children together. Somedays, I can’t accept his death, I think it is just too much for my heart to take still. People say he is in a better place. In my head I know that. I know if he was here he might be suffering, but a mother’s heart is stronger than her head. To me, the best place a child can be is in a mother’s arms.

Today at church I turned my back for one second and Katie was down the hall and out of my sight. I panicked, took off running and scooped her up (of course she was laughing the whole time). When you are a mother, you have a natural instinct to always know where your children are, what they are doing, are they ok and safe. When that child dies, that instinct doesn’t go away, it doesn’t shut off like a switch. It is still there, but you can’t see them and you can’t hug them. I feel some days I am running down the hall, looking for Christopher. Is he ok, what is he doing, where is he, why isn’t he here with me? It’s not something I can help, it’s a instinct that will always be with me. When he gives me his “signs” I feel he is communicating with me and I can breath again for another few weeks.

I was so, so, so, sad this week. I don’t know if it was another anniversary, or a combination of post-partum hormones and starting up grad school and work again. As selfish as it is when I pray to Christopher I tell him I need signs, his mama needs to know he is ok and still with me. I don’t need fancy cars or jewels in life, I just need signs from my boy. I think I always will. Well, as usual Christopher came through.

Sign #1:

I love People magazine, it is my release to read all the Hollywood gossip, look at the cool clothes. Mine didn’t come this week, but I just felt I had to buy one. I went out and bought one and as I was reading saw there was advertisement for MPS VI (Christopher had MPS I). This is huge publicity for awareness and the MPS Society…

Sign #2 and the best one of all:
Katie recently graduated to the toddler room at school where she FINALLY at 18 months old started walking independently and eating something besides cheerios and string cheese. When I went to pick her up Thursday, who should be there playing with her but Christopher’s favorite teacher (and second mom) who had left the school and is now coming back to be Katie’s teacher!! I’ve been nervous to leave Andrew, he’s so small still and stays anemic and cold alot (we will be going back to the hematologist again in 6 months). However, Ms. Heidi will be starting the same day as Andrew. I truly feel, in my heart, Christopher sent her to look after his brother and sister. My work and school, are very important to me. Not from a career standpoint, but from a “calling” standpoint. I always feel Nursing is my calling, however I always have that mother’s guilt of having to leave my children (even though it really is only part time). When I pray I ask Christopher if this is what I am meant to do, if I am meant to help other children, for him to guide me and lead me and let me know. Well, I don’t think I could have asked for a better sign than to have Ms. Heidi come back into our lives on a weekly basis to take care of his siblings. I told Christopher he is the best baby angel ever.

I know he sent down his sister and brother for us to love. Life is truly crazy and we feel like we have twins most days (two diapers, two bottles/sippy cups etc..) In the past 9 weeks since Andrew’s been born I’ve been sick with post operative complications, Katie’s had croupe and ended up on  prednisone (anyone who’s had a kid on prednisone knows how much fun that is), the dog bit Katie which ended up in a trip to the ER, etc., etc…. However, I can’t help but feel truly, blessed.  Nothing gives me greater joy than watching Katie drag her blankie around all day. In ten years it won’t be cute when she throws her food (not that I’m enjoying it now), but her smile and head nod when we correct her won’t have the same effect and make us laugh. Andrew has started gives us crooked gassy smiles, and I can’t wait until we get an actual smile.

And so my heart continues to feel broken, I truly don’t think it will ever heal and understand. Every day I try to figure out a way to live through the pain and carry on. Behind my smiles are tears on my heart. However,  I am so grateful for the gift of his brother and sister he gave us, there is no doubt to me they were hand picked. It will be a blessing and miracle watching a child grow up… All 3 of  our children are our heart and soul and we are blessed they are ours…

January 22, 2007

Second Birthday, Three Years Later

Three year Transplant Anniversary

Three years ago Christopher was given a second chance of life. It feels like three minutes ago.

Transplant dates are often considered “second birthdays” – a new chance at life. We are so grateful we got to give him a chance.

December 30, 2006

I wish….

I wish….  When Katie fell from learning to walk and got a bruise I didn’t think she had cancer (bruising is a sign of cancer). I try to remind myself, kids fall, kids get bruises, it’s a “normal thing.” I have a horrible fear of having another child or person I love go through chemotherapy.

I wish…When Andrew breathes heavy at night, I didn’t wake up in a cold sweat unable to breath, worried he may Hurler’s Syndrome. (Heavy nasal breathing is a sign of Hurler’s)

I wish… We didn’t have to leave our children on Christmas day with their grandparents to go visit our oldest son in a cemetery. All three children should be together at home, safe and warm and opening presents together.

I wish... On Christmas day Joe and I didn’t have to stand in the pouring rain, in a gray cold cemetery to wish  our son Merry Christmas. I bought him a little Elmo drill and goggles I left at his grave. If he was living he would be “working around the house” with Joe.

I wish… Children didn’t die and leave parents with broken hearts for the rest of their lives. To live a pain that is too intense and overwhelming to explain to people, every day of their life,

I wish….Katie would stop poking her little baby brother in the eye and squeezing his head.

I wish… Christopher was here to set his little sister straight.

I wish… Christopher was still alive….

But, he’s not.

 

December 18, 2006

God Bless the Janitor

It was another one of those nights. Their was another “crisis” with Christopher in the PICU and things were tense and scary. I don’t remember exactly what the crisis of the moment was, everything just seems to fade into each other. I do remember being so, so, exhausted and clutching my cell phone calling Joe and my mom every few minutes. The PICU at Hopkins is down the hall from the OR. Lined up against the walls are stretchers, ready for the patients the next day to go into surgery. I just had to lie down for a minute, and the cold, black stretcher looked like a bed at the Ritz at that moment. I went to lie down on the stretcher in the middle of the night, cell phone in hand, and looked at the stars painted on the walls. I was exhausted, sad, and didn’t know what happened to my life. At that moment a lonely janitor sweeping the floors came by. “Mam, I can’t let you sleep like that, it’s dirty.” “Great”, I thought, I’m going to get kicked off my stretcher and end up wandering the halls in a sleep deprived state. The janitor brought over two white sheets and put one under me, and one on top and walked away. All I remember is looking at him through hazy eyes and thanking him as he walked away. Random acts of kindness.… Does that janitor know what an impact he made in my life? He took care of me when I couldn’t, he went out of his way to help a hurting person. I hope God blesses him for his good heart and soul.Random acts of kindness, isn’t that what this world is all about? We never know the impact it will have on someone, all it takes is one minute to impact a person’s life.

I went to my final perinatology appt today, the follow up after c-section appt. ( a perinatologist will only see you and deliver you when you are pregnant). It was the closing of another chapter, I had all three of my children with these doctors, three high risk pregnancies, with three beautiful babies. There was a young couple in the office, they were pregnant with their first child. They looked so young, so naive, unaware of the impact a child has on their life. As I was sitting there rocking Andrew and smelling like puke (it had been a long day of projectile vomiting from reflux) there was so much I wanted to tell them. I remember a time when joe and I had been that young and naive. We never knew the love and pain you could feel for another human being.

My parents dog went to heaven today, she died in her sleep from liver failure. She was 8 in human years, 56 in doggy years. I told my mom, maybe God wanted to give Christopher a puppy for Christmas in heaven. I gave Emma (dog) a kiss on Saturday when I saw her last, I knew she was dying. I told her when she saw Christopher to tell him I love him and his mom grieves for him and misses him with every breath she takes.

December 2, 2006

Baby Steps and Checklists

I am a huge fan of lists. I make lists of checklists all the time, Joe makes fun of me because I am always redoing my lists. After Christopher died my life came down to lists. I remember waking up every morning and starting my day off as a list:

-Put feet on floor  check

-Brush teeth         check

-Put on makeup, make sure it covers the swollen and red eyes   check, check

-Drive to work, and so on through out the day, having to remind myself to do the simplest things. Life was much easier lived in seconds vs. minutes, hours, or days.

When Katie came along I went back to autopilot. She battled colic and my feet would just hit the floor running to comfort her. However, things settle down and there are days when things are quite, and the pain gets through worse than ever. My life goes back to lists, reminding myself to live again. The lists help ward off the cloud of grief that is always lingering, ready to pour down any second. It’s always raining though, the tears come through all the time. We got our Christmas tree today, I shed a tear, he should be here…

Our house finally feels (almost) full. Having Katie and Andrew together has finally brought a feeling of completion, we are so happy she has a sibling and our life is chaos. Things are almost the way they should be. It’s so hard when people ask us how many children we have. We always answer 3, and the question hurts so bad. We’ve become numb, like a pin cushion that’s become stuck with pain so many times it just wares down as time goes on.

Oprah Winfrey said something I will never forget, “When you have children, you give up any reasons to be selfish.” How true she is. As much as I want to let my grief swallow me, I do not have that privilege any more. I have two other children to raise. Katie is learning to walk and will often fall down. She gets up and teeters around holding our hands, she falls, she might shed a tear, but she starts trying again to walk. I’m still taking baby steps, still trying to figure my way out everyday. People forget this, they think “time heals”. It doesn’t, time is a relative term.

To the people that don’t forget:  thank you…. Thank you for holding my hand…

To Angel Christopher: Thank you for all the ways you are with me everyday. Thank you for playing one of our songs while I write this, thank you for having your “girlfriends” visit us or send us a card, and thank you for helping us to see your presence and spirit are still with us.  Thank you for the e-mail I got this week from the med student  in Romania. I pray this site helps her in her medical practice to treat other kids. We hurt everyday – We miss you so much….

WHAT HAPPENS IN HEAVEN-author unknown

I dreamt that I went to Heaven and an angel was showing me around. We walked side-by-side inside a large workroom filled with angels.

 

My angel guide stopped in front of the first section and said, “This is the Receiving Section. Here, all petitions to God said in prayer are received.”

 

I looked around in this area, and it was terribly busy with so many angels sorting out petitions written on  voluminous paper sheets and scraps from people all over the world.

 

Then we moved on down a long corridor until we reached the second section.

 

The angel then said to me, “This is the Packaging and Delivery Section. Here, the graces and blessings the  people asked for are processed and delivered to the living persons who asked for them.”

 

I noticed again how busy it was there. There were many angels working hard at that station, since so many  blessings had been requested and were being packaged for delivery to Earth.

 

Finally at the farthest end of the long corridor we stopped at the door of a very small station. To my great surprise, only one angel was seated there, idly doing nothing. “This is the Acknowledgment Section,” my angel friend quietly admitted to me. He seemed embarrassed “How is it that there is no work going on here?” I asked.

 

“So sad,”  the angel sighed. “After people receive the blessings that they asked for, very few send back acknowledgments .”

 

“How does one acknowledge God’s blessings?” I asked.

 

“Simple,” the angel answered.   Just say, “Thank you, Lord.”

 

“What blessings should they acknowledge?”  I asked.

 

“If you have food in the refrigerator, clothes on your back, a roof

overhead and a place to sleep you are richer than 75% of this world.  If

you have money in the bank, in your wallet, and spare change in a dish,

you are among the top 8% of the world’s wealthy .”

 

“And if you get this on your own computer, you are part of the 1% in the world who has that opportunity.”

 

Also ……

 

” If you woke up this morning with more health than illness … you are more blessed than the many who will not even survive this day .”

 

“If you have never experienced the fear in battle, the loneliness of imprisonment, the agony of torture, or  the pangs of starvation … you are ahead of 700 million people in the world.”

 

“If you can attend a church without the fear of harassment, arrest, torture or death you are envied by, and more blessed than, three billion people in the world .”

 

“If your parents are still alive and still married …you are very rare .” “If you can hold your head up and smile, you are not the norm, you’re unique to all those in doubt and despair.”

 

Ok, what now?   How can I start?

 

If you can read this message, you just received a double blessing in that someone was thinking of you as very special and you are more blessed than over two billion people in the world who cannot read at all.

 

Have a good day, count your blessings, and if you want, pass this along to remind everyone else how blessed we all are.

 

December 1, 2006

A little Brother Comes into the World

Our Miracle Andrew Joseph

I was readmitted to the hospital for the second time in a week on Monday Nov. 13 for vomiting and dehydration. I got “pumped up” again overnight and ready for the c-section the next day. The NICU team came to talk with us before delivery, and were ready to take him straight to the NICU because of his brother and sister’s history. Andrew was born at 11:29 am on Tuesday Nov. 14. He weighed 6 pounds, 12 ounces and was 19.5 inches. To our pleasant surprise his blood glucose and breathing were fine and he didn’t have to go to NICU! I can not even begin to describe our joy by NOT having another child in the Intensive Care Unit. It was such a special and nice treat to be able to bring him with us. However, the doctors began to become extremely concerned about his bilirubin level and having spherocytosis (blood condition) like his sister did when she was born. They did bilirubin levels right in the OR and found his levels to be high, obviously following in his sister’s footsteps (could this be the beginning of sibling rivalry, what if one child decides to go to Tech, and the other to UVA?) The danger of having a high bilirubin is it can lead to mental impairment and other complications. He was immediately started on phototherapy and although his levels were high, we were able to maintain them, and he didn’t have to have an exchange transfusion like Katie. We worked with the heme/onc doctors all week who were incredible and very sensitive to our situation.

We came home on home health Saturday November 18, they were great and literally met us in the driveway. Andrew was on a bili-blanket for only two days before his levels fell within normal range again. A bili-blanket is a phototherapy blanket and he looked like a little glowworm. Cardiology also cleared his heart (another concern) in the hospital and he is doing awesome! He is such a GREAT baby and literally just eats, sleeps and hiccups! We’ve never had an easy baby like this, often we’ll have to wake him up to feed him. Sometimes we poke him just to make sure he is Ok!

We’ll see hem/onc again this week and feel confident he’ll be released after this checkup. We were so proud of our little glowworm coming through everything. He looks A LOT like his brother – it takes our breath away sometimes. As his adventure was ending, mine was just beginning.

I had been having problems breathing in the hospital and didn’t think anything of it. The day after we got home from the hospital I ended up in the ER at Fairfax on Sunday night/Monday morning. As many of you may recall I have a crazy heart condition that decided at that time to act up, and developed post-op complications. After 10 hours in the ER and a CT scan, it was discovered my lungs were filling up with fluid and I had developed bilateral pleural effusion in my lungs. I was lucky I didn’t require a chest tube yet and I was sent home on more meds to dry my lungs out (basically I don’t think the Emergency Room docs knew what to do with me, but that’s another story-thank god I had my wonderful cardiac nurse there that day). I have been going back to cardiac rehab, and my lungs seem to be healing. We have gotten extra daycare for Katie and friends to help out for the next few weeks while I let my lungs “rest” (anyone that knows me knows I am use to going a million miles an hour and this will be a new concept).

The hardest part of the whole experience was imagining what Christopher went through. He had so many surgeries, and collapsed lungs, did he feel the excruciating feeling I was having? I pray the prayers people said for him enveloped him in a love that protected him from any pain, and have to let my heart settle there. He is constantly on my mind and in my heart and I continue to be proud of him. I know he was with Andrew and I this week and helping us heal. We took Katie and Andrew out to see their big brother last Sunday. Katie crawled around the grave with Andrew’s pacifier as Joe and I cleaned it. We left the pacifier there, a little “thank you” to Christopher.

For now are biggest problems are Katie stealing his blanket and giving Andrew “love pats” (sticking his pacifier in his eyes and trying to do handstands on him), it’s a nice problem to have.

Sunday November 12, 2006

Our third little miracle will be born on Tuesday Nov. 14 by c-section, two days away – and the emotions are overwhelming…..

I was hospitalized earlier in the week for vomiting and dehydration. I’d lost too much weight too quickly, and the docs thought it would be better to get me “pumped up” and strong again. I had my own room, peace and quiet, and it was almost like a 23 hour vacation in the hospital…

With all the quiet of the hospital, it brought me back to my time at Hopkins. All the days I spent  looking out the window at the stars, just knowing there was life on the other side. In the background I had on “Sponge Bob, Square Pants”, it always reminds me of one of my favorite angels from Hopkins. Joe brought me the catalogs and mail and I started reading the monthly issue of Compassionate Friends. As you may recall Compassionate Friends is a support group for people who have lost children. It hit me at that moment how surreal life seemed. Here I am in the hospital 37 weeks pregnant with a baby boy, and at the same time I am reading a newsletter for parents whose children have died, to figure out my first sons death. Once again life and death, death and life, interchangeable and can’t be separated. So hard to comprehend, so abstract, I can’t wrap my mind around it.

I am probably more terrified to have this child, than any other baby. Their is a blissful ignorance before you have your first child. I remember worrying about how the baby would affect my career, would we be able to go out to eat again, and would we ever sleep again. Before you have your first child, you have no idea the depth and love you will feel towards another human being. When you have that baby you know why people say they would die for their children, why they fight for their kids, and how your life is never the same because the incredible bond of love. When we had Katie we were in a cloudy haze of grief and she came quicker than expected and we didn’t have time to think.

i have now preparing myself for whatever the new baby brings – almost waiting for the sky to fall in again. The first two tended to show us who was boss from the beginning. Isn’t it awful to be expecting a baby and preparing yourself for the worse that could happen? It’s just a harsh reality… There have been times throughout this pregnancy when I have had bad days and cried over my grief for Christopher, and when I did the baby boy inside of me would start kicking away. Almost as saying “it’s ok.”

So, here’s to third time being a charm…..

November, 2006

This has been a year of “normalcy” and firsts with Katie. We’ve experienced all the normal baby stuff, rotavirus, hand-foot-mouth and ear infections. We’ve almost been like first time parents again, we’ve experienced a year of “baby normal” and a year of “baby with terminal illness.” It’s still hard to wrap my mind around the “normal baby stuff.” I’ve finally stopped feeling her back for kyphosis or worrying every bruise is sign of leukemia (I’ve learned bruises come from normal baby crawling and walking). She’s ok…

Sunday November 12, 2006

Our third little miracle will be born on Tuesday Nov. 14 by c-section, two days away – and the emotions are overwhelming…..

I was hospitalized earlier in the week for vomiting and dehydration. I’d lost too much weight too quickly, and the docs thought it would be better to get me “pumped up” and strong again. I had my own room, peace and quiet, and it was almost like a 23 hour vacation in the hospital…

With all the quiet of the hospital, it brought me back to my time at Hopkins. All the days I spent  looking out the window at the stars, just knowing there was life on the other side. In the background I had on “Sponge Bob, Square Pants”, it always reminds me of one of my favorite angels from Hopkins. Joe brought me the catalogs and mail and I started reading the monthly issue of Compassionate Friends. As you may recall Compassionate Friends is a support group for people who have lost children. It hit me at that moment how surreal life seemed. Here I am in the hospital 37 weeks pregnant with a baby boy, and at the same time I am reading a newsletter for parents whose children have died, to figure out my first sons death. Once again life and death, death and life, interchangeable and can’t be separated. So hard to comprehend, so abstract, I can’t wrap my mind around it.

I am probably more terrified to have this child, than any other baby. Their is a blissful ignorance before you have your first child. I remember worrying about how the baby would affect my career, would we be able to go out to eat again, and would we ever sleep again. Before you have your first child, you have no idea the depth and love you will feel towards another human being. When you have that baby you know why people say they would die for their children, why they fight for their kids, and how your life is never the same because the incredible bond of love. When we had Katie we were in a cloudy haze of grief and she came quicker than expected and we didn’t have time to think.

i have now preparing myself for whatever the new baby brings – almost waiting for the sky to fall in again. The first two tended to show us who was boss from the beginning. Isn’t it awful to be expecting a baby and preparing yourself for the worse that could happen? It’s just a harsh reality… There have been times throughout this pregnancy when I have had bad days and cried over my grief for Christopher, and when I did the baby boy inside of me would start kicking away. Almost as saying “it’s ok.”

So, here’s to third time being a charm…..

November, 2006

This has been a year of “normalcy” and firsts with Katie. We’ve experienced all the normal baby stuff, rotavirus, hand-foot-mouth and ear infections. We’ve almost been like first time parents again, we’ve experienced a year of “baby normal” and a year of “baby with terminal illness.” It’s still hard to wrap my mind around the “normal baby stuff.” I’ve finally stopped feeling her back for kyphosis or worrying every bruise is sign of leukemia (I’ve learned bruises come from normal baby crawling and walking). She’s ok…

End of October, 2006

“D” Day + 3 Years

“D” Day, a day that will live in infamy in my life -“Diagnosis Day”

Three years ago marked one of the worst days of our life – the day our child got diagnosed with a terminal illness. It amazes me how in all the billons of seconds in our life, all it takes in one second in time to forever change our lives.

Positive, Negative, Yes, No, One word… One second ..is all it takes.

Three years ago I did not think I would have three children, live in a hospital for over 6 months and have my child die in my arms. I didn’t know I would think bald sick children where the most beautiful kids in the world. I didn’t think I would survive. I truly didn’t know what hell was, I do now…

I didn’t know my own strength and I certainly didn’t know the circle of love that would envelop us. God has blessed us with the most incredible friends. They have never left our side. They taught us their really truly angels on this earth.
Saturday September 2, 2006   Labor Day Weekend

410 Days and Reflections from a summer

It has again been quite a while since I have updated. So many thoughts all the time so I am writing today and publishing some past entries I wrote but never published.

So the summer has come and gone, and I am glad to see it go. I’ve never been a fan of the heat, and with my big belly these days, it’s not fun.

Katie continues to be the light of our lives, and even though we have battled four ear infections in 5 months, we continue to be amazed at her everyday. She has finally started crawling and helps keep me in shape by running after her. She crawls around the house saying “ro, ro, oat” (row, row, your boat) and “uh – oh” (with her mouth in a perfect zero as she says “oh”).

Her first birthday came and went, and it brought back feelings and emotions I wasn’t expecting. For some reason, first birthdays are such a marker, such an “entrance into childhood”. Christopher ended up in the PICU in kidney failure on a morphine pump. When I look at pictures of that day, he was so, so, sick. I am so grateful to the people that tried to make his day special. I still have the balloon, plates and banners from that day.

Within the next few days, Katie will have lived longer than Christopher. I will have a child who has lived longer than 410 days. I didn’t ever think I would be measuring my children by how many days they have lived, but she will have lived longer than him. About 3-4 times a month we still go to his grave. We tidy it up, leave flowers or toys, and just spend time. A few weeks ago I walked down the hill from his grave and looked up at it. There was my husband cleaning it so carefully and sitting next to him was my beautiful baby daughter. She was sticking grass in her mouth and trying to crawl across her brother’s grave marker with the butterfly song on it. I never thought this is how my family would spend their Sundays, with my “living child” crawling over my “angel child’s” grave. I feel I am in a constant balance between life and death, death in life, and life in death.

My birthday was last week, and I just laid at his grave and cried. My arms still physically ache to the point they feel like they are going to fall off sometimes. Not being able to hold him is also a physical pain that is so overwhelming, and that day the physical pain was unbearable. I was so sad he couldn’t be here with us, but I got a beautiful sign he was ok, thank you Brandon….

For the first time in two and a half years I laugh and don’t feel guilty about it. Katie makes me smile everyday and I know that’s ok. I continue to work and take graduate classes, I need the structure in my day, it helps my mind from going crazy. I love to see my girlfriends and discuss the “matters of the world” such as makeup, teething, and what’s going on with who. I have a wonderful marriage, I go to church, and I believe in the goodness of people and Almighty God. The best part of my day is when my little girl with her four teeth smiles at me, it just melts my heart all the time. I think I’ve managed to somehow keep it together and be thankful of my blessings. But deep in my heart I’m still in pain everyday. I’ve cried myself to sleep the past two nights, it never goes away, I just learn to incorporate it as a part of my day. I don’t understand why I have to live in this pain the rest of my life (can you tell I’m having a bad day?) I miss my boy…

I’ve always used this forum to hopefully help others in their quest of finding out information about Hurler’s Syndrome, or to help them not feel so alone in their grief. So I am going to use this to discuss something very important I would like to address…..

Many people have been congratulating us on “baby #2”. While we feel blessed to have such wonderful encouragement, I would like to clarify the fact we have 3 children. Because Christopher died, does not mean he did not exist. When a woman looses her husband, we don’t say she was never married and act like she never had a husband. When a child looses a parent, we don’t say that child never had a parent. So why must we act like we never had a son? Now Joe and I realize, and are fully aware, of the fact this is an uncomfortable subject people don’t like to discuss. However, to not acknowledge him as a member of our family is like a knife cutting through my chest, he is our son, he is real. Sometimes I have to look at his pictures to remind myself the pain is real, but he did, and does, exist.

So here I am 28 weeks pregnant and we like to say:
We have three children, one who lives in heaven, and two who will live on earth. That is the way it is. We are parents to three children, we just parent each one in a different way. God has blessed us……

So for all the parents out there, whose child now lives in heaven, help us to celebrate their lives like we celebrate the lives of our living children. Each child is a miracle and a gift, not to be forgotten or overlooked.

Tuesday July 4, 2006

Fourth of July

I wonder if the angels can see the fireworks from heaven. I wonder if there’s a little parade, and all the baby angels wave little flags and eat hotdogs. I constantly wonder what Christopher is doing during his day. With all the recent thunderstorms and lightening I tell Katie all the angels in heaven are having a party and the lightening is a strobe light at their party, the thunder is the angels dancing…

Cheerios & a Nobel Prize

Katie has FINALLY started eating solid food. I sit and watch her eat Cheerios and my mouth literally hangs open. It is the most amazing thing I have ever seen. To see her trace her little finger around the Cheerio and watch her mind as she makes the connection to put the cheerio into her mouth, she is the smartest child in the world. I think she deserves a Nobel prize, to figure out such an amazing thing, it literally leaves me in wonder….

Now most people reading this will have had, or known kids to eat cheerios. But you see, Christopher never got to eat cheerios, he never got to so the “normal” things in childhood as simple as figuring out how to eat. Joe and I could see his little mind clicking away all the time, thinking in his Christopher way. He was such a smart, smart, boy…. I take nothing for granted with Katie. Every childhood marker is truly a miracle, a miracle of growing up, of living this life, it simply astounds me to see her reach these markers. It breaks my heart he never got to eat Cheerios.

 

Sunday June 11, 2006

Angel Day

Two Years an Angel

There has been a significant reason why I haven’t updated the website in the past two months, which will be explained. There are also past entries I have written that will be published under these entries.

In the past two months, we have been living under a stress and hell unfelt since our days at Hopkins. “Anniversaries” including birthdays and angel days are still an excruciating time. The pain and remembrance of loosing our boy is overwhelming.  I have dreams of the ventilators, the machines, the look on his face, the hard bench we slept on. It’s a constant challenge and anniversaries amplify those feelings.

Last month we  moved (just about two miles down the road from where we were living) and left the house where all our memories of Christopher were made. I cried when I left his room, it was always my goal to get him back to that Snoopy room. The new house is great, but it started off as a huge money pit. On top of that, Katie’s been sick, car broke down, work, school, life etc… However, in the midst of all this, God gave us a surprise….

…And than there were five….

Katie’s going to be a big sister!

God gave us a VERY UNEXPECTED, unanticipated surprise. As I write this, I am 16.5 weeks pregnant! The stress we have been feeling the past two months was not knowing if this baby had Hurler’s Syndrome. As you may recall, there is a 25% chance with each pregnancy that the child will have Hurler’s Syndrome. To have a child die of a terminal illness, and than have to worry about your future children dying of the same terminal illness – it almost makes the pain 100x harder if that was even possible.

Part of what made this so difficult was they are no longer doing prenatal testing for Hurler’s Syndrome in the United States. People are scared of law suits and are no longer doing testing. This is so absolutely heartbreaking for so many families. The technology is there, people are just scared to use it because of the almighty dollar. So we had CVS testing done here in Virginia at 12 weeks and sent to Adelaide, Australia. Yes, that’s right, Australia. In order to find out if we were going to have another child who lived or died, we had to have testing sent to Australia. Because of flight time, some of the cells died in transit and, there were not enough cells to test. The drs. had to grow the cells out in order to test them, this took another two weeks to find out the results. Thank God for our genetic counselor, and the Genetics & IVF Institute, they were instrumental in getting the testing done. It wasn’t fun moving, and praying that a medical courier service would make it to Australia with our little cells – I wouldn’t recommend it. We moved on a Saturday, and I went in on Monday to have the testing.

After four weeks of waiting for results – a hellish four weeks – we found out on Wednesday we are having a Healthy Baby Boy at Thanksgiving!!! Thanks be to God… We started off Christopher’s “Angel Week” not knowing if we were going to have another child who died. Just four days before his anniversary we found out the news….

We had received so many signs from Christopher, I am so grateful to him. I tell him he is the best baby angel in the world. Butterflies everywhere, a fortune cookie that said “A pleasant surprise is waiting for you, and a million “Christopher songs” everyday on the radio. In Church on Sunday as I sat there crying waiting for the results the pastor said “There are Andrew’s who need you.” This is the name we have been thinking about using (not 100% sure yet, still deciding). My head popped up when he said that, was this our little boy? In my heart I always knew there was “another little boy” waiting for us named Andrew. It is just what I always felt and knew.

We are thankful for the friends that remembered this angel day. Your love continues to overwhelm us, we are so grateful to you. Many people forgot this year. That’s ok, I understand. Life goes on for people. However, our life never goes on but so much. People do not understand you just incorporate the pain into your daily living, kind of like brushing your teeth.  It never, ever, ever leaves. I miss him so much and am so thankful for Christopher’s constant presence and signs.

Katie gets more beautiful each day, and I am still getting use to a “normal” baby. She now sleeps through the night (almost all the time) and has two little baby snaggle teeth. I am so grateful we can give her a “sibling on earth”. They will be 15-16 months apart. Many people have said “you will have your hands full.” Well, maybe, but as long as I don’t have to watch another child go through chemotherapy and die, everything else is minor in comparison. There will be no more children for Joe and I after this. We are done. Having to wait for test results was a nightmare. We wanted three children, and we got three children, just not in the way we imagined.

In Summary:

When Joe called to tell me the results he said: “We are done with this disease. It is over with Hurler’s Syndrome. It can’t take anymore of our children’s lives. We are through with this disease – it is out of our children’s life.” I can’t think of a better statement to sum up everything. This disease took our oldest son, and it won’t take our other children. However, what Hurler’s Syndrome never took was Christopher’s spirit. It didn’t take his beautiful little spirit that fills my heart and gives me a million signs a day from him. No disease can ever steal a person’s spirit.

I Love You Christopher, I miss you so much, my heart aches for you everyday.

 

May 2006

Amputation of the Heart

As I continue down the road of the never ending graduate degree I just wrapped up Spring Classes. One of the classes required me to go in and meet with the teacher for an evaluation. The teacher asked how I liked the class and I responded how much I enjoyed it, and how it was the first time since my son died I hadn’t felt guilty for doing something I enjoyed. His response was the following: “If your son was here he would tell me to just get over it and move on with your life. You will never forget him, but you just get over it and move on.” I thought I was going to die. I came home and cried to midnight. It was just the careless and reckless way he referred to the death of my child, like it was the death of my dog and I could get another one. I don’t like the turn “move on”, I think it sounds cold, like you are just stepping over a pile of dirt in the street. You don’t ever but so much “move on”, you continue. I continue my life.

So, here is something I’ve been thinking about, and that I don’t understand…

When you loose a child, why do people treat you like you can replace a child? The thing people don’t understand is loosing a child is like having an amputation of a limb; an arm or a leg. Only people don’t see the amputation, because it’s an amputation of the heart. It’s not visible on the outside, you don’t see the bandage, amputations of the heart are invisible.

You see a child grows inside you, they are apart of you, much like your arm or leg – there is no separation – you need that part to function in life. When I was working in the Operating Room and I had a patient who was going to have a leg amputated (or had been amputated) I could never imagine saying to them, “Sorry about that leg,  we’ve got a great plastic model that will take that place, and you’ve just got to get over it and move on.”

When you loose an arm or leg, you must learn to walk again, eat again, write a new way and put your clothes on a different way. In the beginning of loosing Christopher I had to learn to go into a “real store” (being in a hospital for 6 months doesn’t count) and not feel overwhelmed, I had to learn to put on clothes that didn’t smell like puke or vomit, and I had to learn to live life again. Children are apart of you, they are no different than your eyes or ears, your arms, your legs. They just grow inside where no one can see. They never, ever go away. Patients who have lost an arm or leg talk about “phantom ghost pain” where it feels like that extremity is still there.

I have phantoms ghost pains every second of life, I had a piece of my heart amputated on June 11, 2004.

Monday April 24, 2006

                 Happy Third Birthday Christopher

We Love You So Much

 

 

 

Sunday April 16, 2006       Easter Eggs in Heaven

I wonder if there’s an Easter Bunny in heaven? This is a question that I ponder and worry about. As a mom I want to make sure my little boy still has an Easter basket full of goodies on Easter morning. I hope there are lots of Elmo’s and banana yogurt’s in Christopher’s basket. Easter was our last holiday with Christopher. It was in the Children’s House filled with lots of love and happiness around him. He didn’t feel good on Easter, he was pale and swollen, and had a scab above his lip, but I remember him smiling…

Katie had her first Easter and looked like the most beautiful little girl in the world, with an extra special dress and bonnet. We forgot to take her to see the Easter Bunny, another one of those “normal” things you are suppose to do – still getting use to normal.

For the past month I have been getting coupons from the place at the mall that does all the kids pictures, “Capture that big birthday smile, each precious year deserves a portrait, his latest milestones will last forever with this special offer!”Just another reminder, Christopher’s not celebrating his birthday with us this year. After he died we got “promotional coupons and diapers” in the mail at “each stage of our child’s development”. The diapers, pictures, and coupons cut like a knife. We know what we have, we know what we don’t have. We don’t need diapers and coupons to remind us. However, as we always say, we feel blessed to be the parents of two wonderful children. We just wish he was here with us, it never goes away.

Sunday April 9, 2006

To You, My Sisters

By Maureen K. Higgins

 

Many of you I have never even met face to face, but I’ve searched you out every day. I’ve looked for you on the Internet, on playgrounds and in grocery stores.

 

I’ve become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my “sisters.”

 

Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail.

 

We were initiated in neurologist’s offices and NICU units, in obstetrician’s offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.

 

All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn’t quite right. Then we found ourselves mothers of children with special needs.

 

We are united, we sisters, regardless of the diversity of our children’s special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children’s needs are not as “special” as our child’s. We have mutual respect and empathy for all the women who walk in our shoes.

 

We are knowledgeable. We have educated ourselves with whatever materials we could find. We know “the” specialists in the field. We know “the” neurologists, “the” hospitals, “the” wonder drugs, “the” treatments. We know “the” tests that need to be done, we know “the” degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, nephrology, endocrinology, and physiatry.

 

We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.

 

We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during “tantrums” and gritted our teeth while discipline was advocated by the person behind us on line. We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can’t understand what it’s like to be in our sorority, and don’t even want to try.

 

We have our own personal copies of Emily Perl Kingsley’s “Welcome To Holland” and Erma Bombeck’s “The Special Mother.” We keep them by our bedside and read and reread them during our toughest hours.

 

We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors’ front doors on Halloween, and we have found ways to help our deaf children form the words, “trick or treat.” We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.

 

We’ve gotten up every morning since our journey began wondering how we’d make it through another day, and gone to bed every evening not sure how we did it.

 

We’ve mourned the fact that we never got to relax and sip red wine in Italy. We’ve mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we’ve mourned because we left for the airport without most of the things we needed for the trip.

 

But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.

 

But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.

 

Sunday April 2, 2006

It has been over two and a half months since I have updated, and for that I am truly sorry. Every time I have sat down to write, “life” has gotten in the way and I have been interrupted.This update will be an accumulation of thoughts that have been written down at different times, and will now be put together.

As each month passes, it brings its own set of memories or flashbacks.

January brought our friends annual super bowl party. Amidst the laughs at this year’s party brought flashbacks of Hopkins. I remembered two years ago looking out the window at Hopkins, mad we were in the Hospital, and not at the party with our friends. Christopher would have been hanging out and “watching” the game, not hooked up to machines and vomiting.

February brought the memories of Valentine’s Day. My dad had driven up to Hopkins to take care of Christopher so Joe and I could go out. My dad was so proud to take care of his “little partner”. I also started a new job in February, one I have been overjoyed about. I was offered a position at Fairfax Hospital as Pediatric Clinical Instructor. I’ll be helping with the NICU, PICU, pediatric and pediatric oncology nursing fellowships among other teaching opportunities. It is a part time position, so I can keep working on the never ending Master’s degree. I have so many ideas, and am so excited to explore opportunities to hopefully help so many other nurses help their patients. I truly feel Christopher “led” me to this position. This is my time when I can still be a “mom” to Christopher. What people don’t understand is when a child dies, all the “mom” feelings and emotions just don’t go away. We have all this energy and love for a child, and when they die it is still there. My time at work is my time I can be a mom to Christopher.

March brought trying to balance work, school, Katie still not sleeping through the night, and many life changing events. We sold our house, and bought another house about two miles down the road. We will be closing on the house the end of April and moving in May.

At the beginning of March I attended a Virginia Tech alumni casino night. Sitting there with friends and laughing, I looked out the windows at the stars, and thought of my little angel. I remember looking out the window at Hopkins and seeing the same stars; praying to the same stars that he would be ok. I  became so sad looking at those stars, and asked Christopher for a “sign” and went back to the roulette table. I place my bet on 24 (Christopher’s Birthday) and it hit, I won $35,000! Now let’s remember this is fake paper money. I doubt I should be praying to Christopher and “gambling” at the same time, but it was fake money, and all proceeds go to charity. I laughed, it was so like Christopher, I could see him laughing up in heaven.

Katie was baptized a few weeks ago, in the same gown Christopher was. I was very nervous, very emotional leading up to the baptism.  It was very beautiful, and the congregation was crying. Pastor Don is leaving shortly and since he baptized and buried Christopher we wanted him to baptize Katie. We got our “signs” from Christopher for Katie’s special day. The night before “Something the Lord made” came on, it was filmed at Hopkins when we were there with Christopher. We saw the dome, the statue where we prayed so many times. The next day during the baptism the little hand bell choir rang “Jesus Loves Me”, the last song played at Christopher’s funeral.I look for my “signs” and I whether or not they are real I take them, I figure you just never know when the angels are communicating. Better to keep my mind open, than to let them pass.

This month also saw over 50,000 hits on this website. I pray it continues to help other families out there.

The months pass and they still bring tears. People think it gets “easier” with time, but you just learn to live with the pain. The pain is incorporated into our lives and we still live each day trying to figure things out. I still find myself in a daze, and I can’t believe I have a child who died.

I live in a world where I feel so blessed to have so many friends, awesome parents and  a beautiful daughter. Katie  has a beautiful smile, she holds her toes, and babbles all the time (of course saying da-da), so many things Christopher never did. However, I feel torn, and try so hard not to be “mad” at this disease. Being mad is wasted energy, yet with the month of April and Christopher’s 3rd birthday approaching I feel so angry at this disease, at all diseases that steal children of their future. Angry that Katie’s big brother is in heaven, and not here on earth so the two can play and torture each other the way siblings do. I’m not angry alot, just every now and than. If I stay angry, I let the disease win….

For the first time in two years, I have felt myself have many moments of “happiness”. I don’t feel guilty for laughing anymore, I have a job I love, Katie is a cutie, and Tuesday will mark my 8th wedding anniversary. After eight years of marriage and having a child with a terminal illness who died, Joe and I came out surviving Life keep rolling along, a new different a new normal.

I think about my boy all the time, and will probably be updating more as his birthday approaches. To everybody out there who continues to help us keep his spirit alive, who allows us to talk, and who remembers we have “two” children, we feel so blessed. Despite the constant inner pain, the world is truly a beautiful place.

 

Tuesday January 31, 2006

The Brave Little Soul
By: John Alessi

Not too long ago in Heaven there was a little soul who took wonder in observing the world. He especially enjoyed the love he saw there and often expressed this joy with God. One day however, the little soul was sad, for on this day he saw suffering in the world. He approached God and sadly asked, “Why do bad things happen, why is there suffering in the world?”.

God paused for a moment and replied, “Little soul, do not be sad, for the suffering you see, unlocks the love in peoples hearts”. The little soul was confused. “What do you mean”, he asked. God replied, “Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences, and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone.

The little soul began to understand and listened attentively as God continued, “The suffering soul unlocks the love in people’s hearts much like the sun and rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this-it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer-to unlock this love-to create this miracle-for the good of all humanity.

Just then the little soul got a wonderful idea and could hardly contain himself. With his wings fluttering, bouncing up and down, the little soul excitedly replied, “I am brave; let me go! I would like to go into this world and suffer so that I can unlock the goodness and love in people’s hearts! I want to create that miracle!

God smiled and said, “You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you.

God and the brave little soul shared a smile, and then embraced. In parting, God said, “Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed.

Thus at that moment the brave little soul was born into the world, and through his suffering and God’s strength he unlocked the goodness and love in people’s hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys-some regained lost faith-many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives were changed forever. It was good. The world was a better place. The miracle had happened. God was pleased.”

Wednesday January 18, 2006

I rang in the new year crying. I was so use to saying “Christopher died last year”, it’s not last year any more….Another year has passed, and he’s still gone. The nightmare never ends, the pain has gone from a sharp knife to a constant dull ache. WAKE ME UP PLEASE!!!! Somebody WAKE ME UP!!!!

I still feel like I live in a dull haze. Somedays are fine, most days are hazy days…. I ran a red light last month with Katie in the car, lost in my haze. It scared me to death. I was on my way to see Christopher’s grave, I pulled over and just shook. I’ve learned to incorporate the haze into my daily life. The haze and I are one. People don’t see the haze, I’ve learned to incorporate it so no one sees it. The haze screams “Wake me up!!!!!!!!!!!”

When people ask how we are, I describe it in reference to Hurricane Katrina. Hurricane “Hurler’s Syndrome” came and ripped my life apart. It stole my foundation it tossed everything apart. The rain still falls, fast and hard some days. Often when I look out on the horizon I see us standing on flat, empty ground. The wind still blows, and occasionally I can see the sun. I work towards the sun. My precious Katie is my sunlight, giving me a reason to fight. I have no foundation, everything is gone. Slowly Joe and I rebuild. One brick at a time. The bricks are heavy, they hurt to lift. Some days they are light as a feather, we have friends who make us laugh and together we build a wall. We see our precious Katie’s crooked smile and silly toes and it makes us want to build a castle to the sky.  Her smile lights our dark nights and we build.

And than it hits, Hurricane Hurler’s…..

The awful disease, the chemo, the transplant, the FLASHBACKS………….

And we fall, and we rebuild….

This has been a week of pain, I feel like someone is ripping my insides out again. Two years ago this week we were sticking needles in our babies body, giving him poison (chemo). I hate chemo. I think one day it will be a thing of the past, anarchical and outdated like leeches were to George Washington.  Did we do the right thing? Did we make the right decisions? We’ve come to peace with most of these questions, but they still pop up. Sunday will be the anniversary of Christopher’s transplant, his second chance at life. We donated Katie’s cord blood when she was born. Hopefully it will give another family hope like we were given.

We are having a memorial blood drive at our church Saturday. I call it the “Second Annual Angel Blood Drive in Memory of children who have passed away from childhood illness.” We know too many children who have died.

Everyday I fall deeper in love with Katie. When Joe and I walk in the room and she smiles, it’s brighter than the sun and makes my heart melt. That’s the great thing about having kids, they teach you how to love even deeper, and even richer, when you think you can’t go on. Their little smiles is what life is all about.

Sunday December 18, 2005

Our choir was awesome in church today. As I sat and listened to them sing “Gloria” the music was truly beautiful and overwhelming. I just knew their jubilant sounds were being heard in heaven, and for just a moment I knew it was something special, that  Christopher and I could be sharing together. Sitting there, listening to the music together, him in heaven, me here on Earth, something to join us together again.

I have been sooo grateful to all our friends who have addressed their cards to us with “Angel Christopher” on it. It means so much. When you loose a child the thing  parents want the most is acknowledge, acknowledge, acknowledge, that child. The broken heart may not be seen underneath a warm winter sweater. The tears may be covered by thick makeup, but they still live in their parents and siblings. That never changes.

A good buddy of ours became an angel on Dec. 5 and went to join Christopher, he was 8. Our hearts are so truly broken and saddened. We had gone through chemo and transplant together and had survived what I like to call “The Horror of Hopkins”. I still don’t know why children become sick, I don’t know why they die. I just know they are loved. Their is a common thread I have found in these families. The families where the children become sick, the ones who suffer and become angels. The thread I have found that is so deep and so penetrating is – God.

With a steadfast heart turned upward, and hands constantly folded in prayers is a faith that is so pronounced it is piercing. Each family prays for healing – even though it may not always come in the way we want….  Even though we still hurt, we believe. It is this blind faith , the acknowledgement our loved one is OK, it is the only thing we have to hold onto.

 

Christopher Signs

I write about what I call “Christopher signs” as much for myself, than anything else. I keep them as record to remind me of all the times I feel he has come to see me, and give me a sign he is OK. You can choose to believe, or not to believe in “signs”, but for me, this is all I have and they keep me going. Personally, I truly believe our loved ones try to connect with us and we must keep our eyes and hearts open, so as not to ignore what they may have to tell us.

A few weeks after Katie was born, I was in the bathroom drying my hair when I felt a tug at my pants. I sighed and was getting ready to say the two most famous words in our house “Down Belle” (As you may recall Belle is the beagle puppy I got after Christopher died). I looked down and no Belle! There had been a strong tugging at my pants and the puppy was no where in sight. I put the hairdryer down and felt astonished. I believe my little boy may have been paying me a visit…

About a month ago Joe’s cousin e-mailed us to tell us that Christopher had been in her classroom! She’s in Nursing school in GA and they were doing topics about genetic diseases. One of the groups gave a presentation on MPS and who should pop up on the screen but our own little Christopher, her second cousin! The group had no idea that the picture of Christopher was related to her, or there was a family member with an MPS disorder in her family Right there, in the middle of a classroom of women, and nurses no less. That’s just “so Christopher.”

Every year my parents church puts out beautiful wooden angels. Last year mom and dad bought one in memory of Christopher. It stays at there house throughout the year, and at Christmas all the angels are put in the front of the church and lit in honor of love ones. My dad checks on the Christopher angel at church,  & his halo keeps tipping backwards. None of the other angels halos tip backwards, just Christopher’s. My mom said it was because Christopher loved to have his hair blowing in the breeze, and it probably just tipped the halo backward. I like to think this. I like to think in heaven he has his beautiful blond hair back that fell out from chemotherapy. I like to dream his hair is blowing in the breeze…

 

Sunday December 11, 2005

National Child Memorial Day

18 Months an Angel

Today is National Children’s Memorial Day. It is recognized by Compassionate Friends and the MISS Foundation as a day to recognize and remember all the children who have become angels. It is a day to light a candle and hope all the baby angels from heaven see it, and remember they are loved. We got home from church, and I went to pull out my candles to light in the front window. We came up with our list of angels: Christopher, Cameron, Andrew, Zoe, baby Sally, Katie F., Max, Reese Cup, Tyler, Katie Bug W., baby James, and a host of others. We decided we could easily burn the house down, so I lit three tiny candles for my three boys (the first three mentioned) and one big candle to encompass all the  angels. I pray they saw the candles flickering from heaven and knew how many people here on Earth love them.

Today also marks 18 months since Christopher became an angel. Such a landmark in time. 18 months. He feels so close, yet so far away. Every day that goes by seem a day longer than when I last saw him. However, I must remember that we will really truly be together one day, and every day that goes by is a day closer to when I get to see him…

Monday November 28, 2005

When Katie was born and came home from the hospital – she slept. Her sleeping scared me to death. I would call my girlfriends in a panic, “She fell asleep again, I think she may be sick or depressed..” They assured me that babies do sleep and this was all normal. I’d get off the phone with them feeling wary, but trusting and praying they were right.

You see Christopher NEVER slept (part of the syndrome). I thought all babies stayed awake for 20 hours a day and only took one 15 minute powernap (although Katie is starting to trail close behind with the power naps).

When the hematologist told us Katie no longer needed to see him I was thrilled, yet terrified. This meant Katie would only see a pediatrician. One doctor? Could this be right, can one doctor handle a child? What about a geneticist, orthopedist, gastroentrologist, and ENT we had with Christopher? This doesn’t include our visits from hematologists, neurologists, dermatologists, nephrologists and cardiologists during transplant. The thought of Katie only having to see one doctor was a radical concept it took me a while to embrace. Much like new parents we were starting over again, starting to find a new “normal” for our daughter, one so different than the “normal”for our son. I have come to the following conclusion:

What exactly is normal? What is this image of the “normal” family everyone tries so hard to live up to? I have realized each family has their own “normal”. I think people often try to live up to some misconception of a “normal perfect family.” Is normal 2.5 children with 1.3 pets per household?

I often worry about how I will incorporate Christopher into Katie’s life and into any future children’s lives we may have. How do I incorporate my dead son, their brother,  into my children’s lives in a “healthy” way.  Going to the cemetery every Sunday after church will be her normal. Putting flowers on his grave, and giving his picture a kiss will just be what our family does. You know what? That’s OK. It’s OK because not every little girl will have a guardian angel watching over her. Not every family will find a feather  at their feet and know it was really sent down by a true angel from heaven. I don’t believe in coincidences anymore – I believe in Christopher.

For that ten minutes every week when we go to visit Christopher our pain will be seen. The rest of the week we will live with the heart ache and pain, the kind that truly rips your soul out that no one will see. I think people see us now and think we are “over it” and have “moved on” because we have learned to smile again. I often look at others now, strangers on the street, and wonder what their pain is, what their story is. Do we all truly have our own different stories? Or do some have more “luck” than others in life and never experience pain? Another one of those questions there aren’t answers to. Whatever it is, I hope people learn to cherish life, love, and their health. In one second our foundation can be gone.

The past few months I have been off with Katie have been good and a blessing in disguise. It has allowed me time to think, time to figure out how to be a mom to two children, one who lives in heaven. I have had time to think about our experience at Hopkins, the horror, the pain, and yes even the occasional moments of joy and kindness that came into our lives. Our hearts have been remolded.

It is now time to move onward. It is time to be “a new different me” again; a mom, wife, nurse, forever graduate student and connoisseur of funky jewelry. I HOPE to start a new job in January (or sooner). It will be hard explaining my situation, but I am fortunate some of my former co-workers will be at my new hospital.  I HAVE to start a new job, & new graduate studies; because I have a new baby. It is who I am. After all, I am a mother to two children, one who lives in heaven and one who is on Earth – mothers don’t have any other choice but to move onward for their children.

Sunday November 27, 2005  Thanksgiving Weekend

The first week of Advent – Hope

To be thankful…….

Katie celebrated her first Thanksgiving with snow on the ground in the mountains of New York. After the lasagna was eaten (remember Joe’s Italian), and the relatives left the reality of the day sunk in – again no Christopher. Driving to New York, I wished more than anything that both my children were in the back seat fighting and yelling at each other. I wished they were playing with each other and could be best friends as they grew up. I wished for Christopher to be healed, here on earth with me. We don’t always get what we wish for, in the way we want it. He was healed, just not in the way I desired, however I must be thankful for his healing and no longer suffering.

My grandfather almost died this week. I got a phone call last Sunday, and was literally packed and in the car in less than 10 minutes for the longest four hour drive of my life. After a week in the hospital, a pacemaker, two hospitals in two different towns and a cardiac catherization, I am happy to say I just got off the phone from hearing his beautiful voice talk about the Virginia Tech game – our Thanksgiving Miracle. My parents and grandparents spent the holiday in the hospital. How do you be thankful when you spend Thanksgiving in a hospital?  As our minister said today during a beautiful service (in summary) – hope and relationships are some of the most important things in life…

To be thankful for:

-having the honor to have relationships with others in life. It is through our family, our friends and those we meet in life that we realize how to live.

-my grandfather was in church when he passed out, where he was attended to immediately by an EMT and doctor. He was singing the last hymn, and the spirit surely moved him….

-being the mother to two wonderful children. I have a “different” relationship with my son now. It’s not a relationship anyone can see or understand. It is a relationship built on love in my heart. It is a relationship I work on every day.

-everything. Life is truly good. Life brings pain, it also brings joys. Katie is starting to “talk” now, and it is the most beautiful thing I have ever heard.

-not understanding. I don’t understand suffering, or why children suffer and are sick. I certainly don’t understand why children have to die and leave their parents.  I still have “flashbacks” to Hopkins. My mind shut down after Christopher died. I was giving Katie a bath and had a flashback of giving Christopher a bath in the Children’s house. I just have to go on and hope and pray I will see him one day. Maybe it’s better not to understand everything.

HOPE. Hope one day no child will have a terminal illness and suffer from this horrible disease.

I was walking the dogs today and in one of the trees I found a white feather. It was a big feather, all white and fluffy. I always like to think of the feathers I find as feather’s from Christopher’s angel wings. That sweet boy – always giving me hope and reminding me he’s close by.

 

Sunday November 6, 2005

I’m sorry it has taken so long to update. So many changes lately…

Ms. Katie has been keeping us on our toes. She has reflux and is also already teething. She’s now 14 weeks old and in perfect and wonderful health. Our last visit to the hematologist was wonderful and he said we don’t have to come back to see him. Yeah!  She was also diagnosed with a small ASD (atrial septal defect), however we will go back to the cardiologist in February and feel confident it will close. She is a beautiful girl, and we love her so much. She has a beautiful crooked smile and it warms our heart and makes us realize how lucky we are to have such wonderful children.

Joe and I will now be going down new career paths. Joe has quit his job, and has started his own company full time. He’s been working part time for years building a Technology Consulting Company. We yet again reached another crossroads and had to choose to go down another new path.

As for me, I’m just moving along adjusting to all the change. After loosing Christopher, change is so difficult.  Moving away and on from people or places that knew Christopher always feels like a threat to loose him anymore. Even Joe switching jobs felt like a string cut from our ties with Christopher. After much prayerful consideration I decided to change my graduate program and will be pursing a different graduate track. I’m even not going back to the same job I knew and loved, one I had cherished for four years. Due to “political reasons” I’ll be working in either a different department or hospital (if any of my co-workers read this, PLEASE e-mail me, I miss you).

The thing I am still learning is nothing can take me away from Christopher. Not new jobs, new places or new things. He still continues to surround us with his presence and his love. Today at the cemetery he gave me yet another incredible sign to let me know he is well taken care of. Having the past few months off has actually been a blessing and allowed me to think and reflect on our time at Hopkins and the time following Christopher’s death.

 

Future Virginia Tech Cheerleader!

It’s a good thing the picture was taken before Tech lost to Miami yesterday or else there would be tears!

 

 

 

Monday October 17, 2005

I bet most people don’t know what today is. It is the day Christopher was diagnosed.  I walked around in a haze today thinking about how much our entire life changed in one second.

Two years ago, our journey began….

There is no way in my wildest dreams I could have imagined the turns life would have taken us. I would never have guessed the experiences, pain or way my life would have changed. When your child is diagnosed with a terminal illness and dies, the world stops…. a new world begins. Yet, somehow you go on living, and must work everyday to combine the new and old worlds, to create a “normal” world somehow.

When I graduated from Nursing School my job was on a Hematology/Oncology floor. I went home crying everyday, the patients broke my heart and I quit after six weeks. I never imagined I’d live on an oncology floor for over 6 months with my own child. I now feel more comfortable around children without hair, than children with hair, they are the most beautiful children in the world. Even my own daughter, Katie, is bald!

Sunday September 18, 2005

Katie:

Our house is being filled again with love from Katie. She continues to constantly amaze us and has  brought a light back to hearts that have been filled with darkness and sorrow. I slowly feel the “old me” returning. A different “old me”, one that can never be the same, but returning none the less. When Christopher died, we thought we would die the pain was so intense. Katie has given us a reason to live again.

She is getting big (at 8 weeks she is almost 10 pounds). We still have our share of doctors appointments and blood draws for her spherocytosis. The cardiologist found a very small ASD (Atrial Septal Defect), however we are all very confident it will close with time. Her “tummy alarm clock” goes off without fail every 3-4 hours, and she loves her bottle!

 

Christopher’s Busy Days:

Christopher has been keeping himself very busy in heaven, and I have the most amazing miracles to share!!!

Happy Birthday to Me! The end of August was my birthday, it was the BIG one! 3-0!!! On every holiday and special occasion I make the same prayer, “Christopher I miss you and love you so much. I know you are busy in heaven playing with all your friends, but if you could give me a sign, I would love it.”  On my birthday we were driving to dinner and I told Joe how bummed I was because I hadn’t gotten my sign. We had gone to lunch, and the cemetery and I didn’t see a butterfly, no sign. Joe said he had seen one, so I just sighed and figured Christopher had given me his sign through Joe, he was probably busy playing. We got to the restaurant and when the manager brought my food he said, “You’re Paige, you are Christopher’s mom”. The manager is a wonderful angel who attends church with us. He just so happened to be working that day. He went on to tell us how he was there the day Christopher was baptized, and the day his cross was dedicated at church. He told us how he prayed for us. I think my mouth probably hung open for 10 minutes, he was my “sign” sent by Christopher! It was the best birthday present I have ever gotten, it made a perfect day. Since that encounter my heart has felt lighter and more free. I am so grateful for my amazing present.

Happy Birthday to Joe! Happy “1st Day of Church” Katie! This had been a very difficult “Hurler’s week”. We learned this week there are no longer any labs in the United States that do prenatal/CVS testing for Hurler’s (MPS1). This is devastating news to all parents who are carriers of this gene, and I’ve taken it hard. I feel this disease has knocked us down again.

Today was the very first day we took Katie to church. She wore an extra special outfit (see above) and cried almost the whole time!  (Thanks to Mrs. Claudina for the beautiful outfit). A package had been delivered for us at the church earlier in the week. I opened it before service (as Joe was walking the crying baby) and was awed at what it’s contents held!

Out of the envelope fell two CD’s, a letter, and Christopher’s obituary that was placed in the Washington Post after he died, over a year ago. A jazz musician from Maryland had just happened to read the paper the day his obituary was placed. Christopher’s picture touched him so much he wrote a song on his new CD and called it “Christopher’s song”. We have never met this person, and he probably doesn’t even know this website exists. He just saw Christopher’s picture in the paper and decided to write a song. The chills that I got were incredible!!! I couldn’t believe it!!! I started running around showing everybody, even the pastors. What a miracle this was!!!

At the exact same time I was opening this letter, my mom was sitting in her church, two hours away, praying to Christopher to help my grieving heart, to let us know he was OK. What a wonderful gift this musician gave us. He will never know how much he impacted a grieving families heart. This Wednesday is Joe’s birthday, I think this is an early birthday present from Christopher.

We went to see him today like we do every Sunday. I took a little plastic guitar and layed it at his grave, our son is so incredible, he sure does ROCK! (I actually use to play jazz for him when he was an infant). I cried with joy at the cemetary for the signs he had given us to let us know he was ok. For the first time I am beginning to feel a tiny amount of peace. I am so thankful to have a son who is still trying to take care of us.

Wednesday August 24, 2005

I was on the oprah.com website tonight and saw a story idea for “unlikely heros.” I wrote Oprah to tell her about my hero, Christopher. In addition to Christopher, my hero’s are all the little children who fight the biggest terrorist of all, childhood disease. Everyday thousands of children battle against genetic disease, cancer and illness. These little warriors are often forgotten about, however they help teach us to live in this world with love and grace. Let’s get these little heros the recognition they deserve, if you have time please write to Oprah to tell her about these wonderful soldiers. Together we can make a difference in these kids lives.

I received an e-mail from a wonderful angel in Portland, Oregon. She read about Christopher Kurls boxes, and is taking them to her local hospital. Yeah! I can’t believe Christopher Kurls boxes will touch children’s lives on the west coast, I am so honored.

Our house has been a little chaotic lately. We find the beagle begging for “negative attention” and stealing the pacifier. She will come around the corner with Katie’s pacifier in her mouth at least twice a day. At the ripe ‘ol age of 5 weeks Katie has entered into that childhood tradition of COLIC! Despite occasional fussiness she continues to fill our lives with light and joy. She has taught us the beauty of this world and how to live again. We feel so blessed and honored to be her parents, we fight over who will hold her, who will change diaper etc… I hope every parent out there that has a child realizes what a blessing they are, and how in a second life can change forever.

Many people will ask me “What I am going to do about Christopher now that Katie is here?” Well, he is still my child, that doesn’t change. Last week, early on a Saturday morning about 5 am, I was giving Katie a bottle. She started “laughing” and had a big smile on her face. I asked her if Christopher was tickling her toes and she kept on laughing. After that I went outside to walk the dogs and the most beautiful butterfly flew up to me. It circled around me twice, and flew in and out of the trees. See, he’s still here.

There were two

 

A History of our family:

 

Once upon a time….

 

There were two,

And than they became three,

And the three lived as happy as could be.

Than three appeared to go away.

 

It appeared to the world to be only two.

But it wasn’t, it never could be.

It was still three….

 

And than came four.

It appeared to be three

But it wasn’t,

It’s always four, and always will be.

Saturday July 30, 2005

A Year and a Half

A year and a half, that is how long Joe and I have waited to bring a child home. We left for Hopkins in January 2004, and never got to bring a child back into our home until Wednesday night. We got to bring Katie home from the NICU about 9 pm on Wednesday. The house has felt so empty, so incomplete and lonely. It is finally a home again, its been a long 19 months.

Katie is such a great baby and doing wonderful. After 8 days in the NICU she came through her transfusion exchange, and got off her TPN (liquid food that goes into her veins – Christopher had the same thing), and antibiotics like a champ. We would have been home sooner but she kept “forgetting” to breath when she was taking her bottles. This was causing her oxygen saturations to decrease. We go to the pediatrician every other day for bloodwork and checkups. We are still watching her bilirubin counts and Hemoglobin, and being extra careful because of her blood condition. We’ll see the hematologists in about a week to start dealing with her spherocytosis. I’m so proud of her for all the hurdles she’s had to overcome in just 11 days of life.  She’s almost 38 weeks gestation  (I had her at 36 weeks)and hardly cries and just wants to eat and sleep. She doesn’t even cry when the doctors examine her or take blood. She’s so little and so precious, she’s just 5 pounds, 8 ounces.

Having Katie after loosing Christopher is a surreal experience. We feel we are picking up where we left off. Only this time we know more what we’re doing and their is lots of pink! Joe and I were both in shock for a few days after learning Katie had a condition she would have to overcome. The spherocystosis is manageable, but will require constant monitoring. We didn’t think lightening could “strike twice”. But, as with everything else, it is just a matter of perspective. We just accept it, do what we have to do, and keep on going. We will not find an answer, their is not one, it is a waste of time to dwell on “why” when we are so blessed.

I’ve been having a difficult time, and have never had this type of pain getting over surgery. It’s taking me much longer to recover, it’s probably because we’ve been at the hospital almost every day, a few times a day. We want to thank everyone for the beautiful cards, e-mails and dinners. I apologize for not having returned everybody’s calls and e-mails yet.

410 Days 

Christopher was alive 410 days. Christopher has been gone off this earth, and an angel in heaven for over 410 days. The days he has been an angel, now outnumber the days he was alive. When I hold Katie (which is all the time) I sometimes see a big smile come over her face. She giggles a little and falls back to sleep smiling. Babies are the closest thing on Earth to heaven and God. When I see her smile I know her big brother in heaven is telling her jokes or tickling her feet. I know he is trying to communicate to me through her, her smile is just too big and her giggle too cute.  I’m blessed to have two wonderful children.

Oh My, Do they have to take more of my blood!

 

 

Monday July 25, 2005

The Story of Katie begins…

 

Kathryn (Katie) Paige Migliozzi came into this world on Wednesday July 20, 9:45 am weighing 5 pounds and 15 ounces at 36 weeks gestation. I had been contracting and her heart rate was decreasing, she was also not moving much. The doctors put me in the hospital on Tuesday, and I had a c-section on Wednesday morning. The doctor later said it was a good thing I had a c-section when I did, the cord was wrapped around her neck and causing the decelerations of her heart rate. Like her big brother, Katie took a trip to the NICU as soon as she was born.She had low blood sugar and was breathing rapidly. I got to hold her for 2 minutes and than she was wisked away.

As the day progressed more bloodwork was taken and she was stablized in the NICU. On Thursday the doctors found her bilirubin level to be dangerously high. Bilirubin is the breakdown from red blood cells. Her level should have been between 4-5, hers was measuring almost 20. This was causing her to be extremely jaundice. The doctors knew this indicated a serious condition and kept running more bloodwork. The neonatologists also felt we should do a full body blood exchange tranfusion as soon as possible. This involves taking out all her blood to get the dangerous bilirubin out of her system, and putting in new donated blood. The doctors put a central line in through her belly button. They would take out 10cc of her blood, than put in 10cc of fresh blood. This lasted a few hours, and the doctors”exchanged” almost 400 cc of blood.

On Friday the hematologist came to talk to Joe and I and told us she had a condition called spherocytosis. It’s a blood disease where her rood blood cells are shaped like spheres instead of circles. This causes breakup of the blood cells (causing the high bilirubin levels), anemia, a low immunity and some other problems. We will have to get blood drawn probably weekly, and she will be on antibotics and folic acid everyday until she is at least 10 years old. She may also need a spleenectomy and we will have to follow her very closely. We are also having a special hearing test done called a BAER test, the high levels could have affected her hearing.

To say the least, Joe and I were stunned. Another child in the NICU, who we can’t even hold, it’s the worse feeling in the world. She wasn’t even 30 hours old and needed a full body blood exchange transfusion, and at 48 hours we were given ANOTHER diagnosis. We didn’t think lightening could strike twice, it was a lot to absorb. Spherocytosis IS not life threatening, and will not impact her learning or development. Katie will need to be monitored very closely and already has some wonderful doctors. She is a fighter and already has her central line out, is off of oxygen, and is sunbathing in the NICU under the jaundice lights. Her bilirubin levels are coming down, and we hope to get off antibotics today or Wednesday. This morning she took 2 ounces of formula!

I was discharged yesterday, and she probably won’t be able to come home until Wednesday or Thursday.  The hospital stay was bumpy, and I’m recovering from some cardiac problems and pain. It killed me to come home AGAIN without another baby.  That was the thing  I was most  concerned about, having to leave another child behind. It seems so surreal. We’re shocked to have two children, both of whom have had to fight since day 1. I can’t make sense of this diagnosis, it’s no where near the severity of Hurler’s, however no parent ever wants to see their child hurt at all. What I do know is we love her so much and feel so honored to be parents of yet another beautiful special child. Everything she does will be so much sweeter and cherished. We are already starting to do research to figure this disease out, and I’ve drafted out a medicine schedule for when she will come home. We are blessed to have so many people who will be apart of her life, and love our little girl.

 

Thursday June 30, 2005

We have passed all of our “first” days. The last day we had to get through was June 17, the day we buried Christopher and put our baby to rest. After the first year time is still weird.  I think there is an unspoken rule after a year life gets back to “normal”, but it doesn’t. We are still in suspended animation and the world still spins around us. Their is no time limit on grief, it’s just there. I read a poem the other day about how “we never intended death and grief to be always be constantly there. It’s just how life has worked out.”

Christopher’s little sister is arriving in a month (although I am begging the drs. to move the date up). I keep loosing weight, and she keeps gaining. I’m 33 weeks and today on sonogram she weighed 5 pounds 13 ounces, with an estimated weight of 8 pounds on delivery!!!! I bet Christopher and Katie are laughing there heads off at  me. Thank goodness I’m having a C- section.

We have some exciting news

Christopher will be making his “screen debut” on the Discovery Health channel in September!!! A producer from NY found this website and contacted us about a new show called “Mystery Diagnosis” starting this fall. They are doing a segment on Hurler’s Syndrome, and asked to use his picture. We are so excited! We hope it helps another family out there, or reminds doctors what to look for so these kids can get diagnosed sooner. We are thinking about having a “red carpet” party. We’ll let everyone know when we find out the exact date.

Next stop….Hollywood…..

 

Wednesday June 15, 2005

Christopher’s “angel day” came and went. We want to again thank all the people in our life who blessed us with cards, e-mails, flowers, phone calls, and care packages. Each act of love truly changes our lives in ways that can not be explained.

Last year at this time, I would always think: “we were doing this last year, or we were at this point.” Now everyday when I wake up I think, “last year at this time Christopher was an angel.” It’s like a double sided coin.

I still try to find peace with knowing he’s in heaven and out of pain, but sometimes my heart wins out over my head. I had to be admitted to the hospital for a few hours this week due to dehydration, so I’ve had a lot of time to “think”. I have written a new piece for the “Inspirations and Hope” page:

Click on the following or go to Inspirations and Hope:

Grief is like a balance beam

I’ll close today with the poem below. I read this often and think about the words. It’s taken me a long time to accept what the words say, and I have to be constantly reminded of them

I’ll change the words to: What a Terminal Illness Can’t Do:

What Cancer Cannot DoCancer is so limited…..It cannot cripple love
It cannot shatter hope
It cannot corrode faith
It cannot destroy peace
It cannot kill friendship
It cannot suppress memories
It cannot silence courage
It cannot invade the soul
It cannot steal eternal life
It cannot conquer the spirit.Source Unknown

 

Saturday June 11, 2005

One Year an Angel, 365 days

 

One Year Angel Anniversary

One year ago today our lives changed forever. Our hearts were shattered and broken, never to be repaired. When Christopher became an angel and went to heaven he took a huge piece of our heart, and we will never be whole again until we all meet in heaven one day.

The last day of Christopher’s life plays over and over and over in our heads. Everyday it is a constant video we are always reliving. Some days I think I understand why he had to die, most days I don’t. The one thing I can always look back with pride and happiness on is we gave him a beautiful death. He was in my arms, with Joe holding his head. He was surrounded by his grandparents, aunt and uncle, pastor, and all the nurses and doctors who had worked so hard to save his life. Our cheerleader Nurse Becky was there. All his girlfriends were there. I know Christopher felt all the love he was surrounded with as he became an angel. No matter how sick he was, we always wanted him to feel the love that surrounded him and I believe he transitioned into eternal life feeling a strong sense of love. Our final gift to him.

I can’t believe it has been a year. Sometimes it feels like an hour ago, yesterday and ten years ago. As one Hurler’s mom wrote me this week, we survived.

So to our beautiful angel Christopher. We love you more than life itself. We ache every second we breath just to touch you one more time. We pray you are free from pain and suffering and God is holding you tight until we can get there.

Friday June 10, 2005

*We will be placing a “In Memoriam” in the Washington Post tomorrow, Sat. June 11, it will be in the Death Notices section*

*I miss my chair

I miss my chair. The old red one with the holes and broken springs I use to sleep in at Hopkins. It was the “fancy” type that was a million years old and pulled out to “recline”. Sometimes it was so heavy I would have to have help just to pull one cushion out, other times it would fold up on me. Every night I’d grab a sheet out of the linen closet and put our Virginia Tech blanket we take to football games on top of me. It was like sleeping every night on a wonderful piece of plywood. Our comfy bed at home seems weird. With the soft sheets and warm comforter, with the dog curled up and snuggling at our toes I can’t sleep. When Christopher went on “strike” against his crib we’d let him sleep in the chair. I’d hold him like a football all night so he didn’t fall or move too much. It was the most comfortable sleep I ever got.

*I miss my bench

When you live in a hospital for 6 months, a person’s sense of reality become warped. Instead of road rage, or long lines at the grocery stores, you get upset if someone takes the “good bench” for you to sleep on. There was a certain bench in the waiting room of the PICU all the parents wanted. It had three cushions in it and was highly sought after. I remember making my mom sit on the “good bench” one night starting at 8 pm. There was no way I was sleeping on the table under the window again. One night I even found an old stretcher to sleep on for an hour. It was just me, my cell phone, and a noisy hallway on a broken stretcher. I remember a janitor came and brought me a sheet because it was cold, and layed it on top of me. That janitor probably doesn’t know that random act of kindness helped mold my life and I will never forget him for that.

Those will always be some of the best days of my life because  no matter where I was, I had Christopher

 

Thursday June 2, 2005

I found this picture of Christopher this weekend  when I was going through his daycare folder. It makes me smile to see his laughing face. I can hear him giggling.

Christopher smiling and laughing with his teacher Ms. Maria

I prayed for this child and the Lord answered my prayer and gave him to me. Now, I give him back to the Lord. He will belong to the Lord all his life.

– 1 Samuel 1: 27-28

Today was a bad day. I must constantly remind myself to stay focused and remember he is safe and happy in heaven.

 

Wednesday June 1, 2005

The past few weeks have been extremely difficult. However, I believe Christopher “visited me” in a dream last week, and it has given me such comfort.

One of my friends told me I need to pray for peace. Since Christopher is never off my mind for a single second,  I pray every second of every day for something to help my pained heart. I have been praying the past few weeks for a “sign”. Just something to let me know he is OK.  Usually he will send a butterfly or his puppy will come over at that exact moment to lick my hand. Neither of these had happened for quite a while and I was very bummed. Last week all that changed.

I dreamed I was at his daycare volunteering. His teachers told me to go rock the baby. The baby was Christopher! Long story short, I got to hold him and love him. I could physically feel him in my arms, he was smiling. He’s come to me before in a dream and he had the same smile. At that exact moment the cat and dog decided to get in a fight across our bed and I woke up. For the past week, I can still feel him in my arms. I truly believe Christopher visited me that night. Some people may chalk it up to crazy pregnancy dreams, but I don’t believe I can discount it as a possible visitation. I think our love ones try to contact us, and we must keep our minds open so we don’t miss their signs. I have to keep my mind open he was trying to tell me he was OK – it’s all I have for some piece of mind.

It has taken us almost a year, but this weekend we finally put his things away in his room. It was hell. Every blanket, every little outfit, held some memory. I thought I was dying all over again. The tears flowed and flowed. There were even things from the funeral I hadn’t had the courage to put up yet. I held each little piece of pajama or blanket and rubbed it to my face, and smelled it to see if it still smelled of Christopher. Some of his blankets still smelled like him and had stains from the hospital. We saved everything, nothing got thrown out. I did learn an important fact in cleaning out his room.

I had been so scared to clean his room, I had been putting it off and dreading it. I think I feared if I put up his clothes and blankets, he wouldn’t be here anymore. After his things were put away, I almost felt a sense of peace. He is still “here”. He didn’t go anywhere! He still lives in my heart just as strong as he did before I put up his things up! His clothes, blankets, toys, they are things. They are not Christopher. Christopher lives in my heart. Nothing, not time, not possessions, nothing can take that away. He is still my life and has that broken piece of me in heaven with him. I’m still his mama.  I think about what it will be like to see him again, and live for that day.

Christopher left me one nice surprise. As I was going through his folder from daycare I found a picture of him I had never seen before. He was laying in one of his teacher’s laps, grinning like a fool at all the ladies around him. That’s my baby……….

Next week he will have been an angel for one year. I can’t believe it, it feels like yesterday and forever.

 

Sunday May 8, 2005

Mother’s Day

Last year for Mother’s Day Christopher gave me a wonderful gift, a clear chest x-ray! We were in the PICU, and use to get x-rays at least once a day to look at his lungs. I remember walking around, grinning like a fool. When all the nurses asked me if I had a nice Mother’s Day, I was so ecstatic, a clear chest x-ray for the day! It’s the best present I ever got.

I’ve thought for a long time about what to write today. The days leading up to today were so stressful, however the day passed with a certain peace and calmness.  A good friend told me to pray for peace, I  have to remember to do that every second of every day. Once again I want to thank all the wonderful people who sent cards, e-mails and called. Thank you for remembering I’m still a mom. This was yet another “1st anniversary” milestone to surpass, and a day filled with much reflection. You reminded me I am still meant to be in this world and somehow manage to keep living.

I was at Hallmark this week looking for a card to send a friend, who also is a mom to an angel in heaven. There were none, I was furious. People forget even when you have a child who dies, you are still a mom. Their were cards, “to mom from dog”, “to mom from cat”, however, the cards people forget about are all the mother’s out there who have angels.

The feelings and natural mother’s instincts don’t leave. I still worry about Christopher’s safety, his happiness, and their are days when my arms physically hurt so bad I can hardly move them. They hurt because they are longing to hold a baby. I can’t imagine what it will feel like to hold a baby again in 12 more weeks when Christopher’s sister gets here.

I’ve gotten a lot of e-mails lately, with a poem that talks about “before I was a mom”. Well I have my own version today, for all the mothers out there, who have children with an illness or disease that makes them special or unique.

Before I was a mom to a child with a terminal illness:I never

*really knew what love was

*knew the strength I had for my child and my family.

*knew the beauty of the world, and all the special people God puts in it to take care of us. There is so much goodness and love, we have to open our eyes to see it or we will miss it.

*been so proud to be trusted with a little soul, so fragile and special, yet so strong. I am so proud to be the mother of a special child. Christopher taught me things about life, I could never learn in a million years

*knew I could change a central line dressing, clean up puke and keep on smiling and singing at the same time. I could also help draw blood from a central line in my sleep. One of his nurse’s told me she remembers me getting up from my chair  while sleeping, turning him upside down while she got blood and collapsing in the chair about 4 am every night (his central line didn’t work well and we use to have to almost put him on his head).

*knew my child vomiting would become as routine as brushing one’s teeth.  Christopher would pull my shirt down and precede to vomit down my shirt and back everyday. I was like OK, whatever… just one of those things. I never got “stressed out” about nap times, dirty clothes, being tired etc… It’s just clothes, they will be there the next day and the next.

*knew that my friends and parents are truly as important to me as the food I eat everyday, they sustain my soul and keep me going, without them I wither away.

*imagined I could love my husband so much. When you have a child the love for your spouse deepens, when you have a “special child” you are truly partners in saving a life.

*realized the important of bubbles. I still keep “emergency bubbles” in my cosmetic bag in my purse. Bubbles are wonderful when undergoing procedures that involve massive amounts of screaming, IV’s, or long waits in doctor’s offices. I think I will always keep emergency bubbles in my purse. It’s just my thing.

I could go on forever… the list is just never ending.

Happy Mother’s Day to all the beautiful mother’s in the world!!

 

Christopher’s 1st Mother’s Day,

1st Day at Church

2 weeks old

 

 

 

Monday May 9, 2005  Mother’s Day Continued……

This poem was sent to me by a beautiful mom of a beautiful little girl. I feel this describes my life. I dedicate it to anyone who is just trying to survive a certain situation in their life or who has lost a loved one. We are all survivors…….

My Mom is a Survivor

My mom is a survivor,
Or so I have heard it said.

But I can hear her crying
When all others are in bed.

I watch her lay awake at night
And go to hold her hand.

She doesn’t know I’m with her
To help her understand.

But like the sands upon the beach
That never wash away…..

I watch over my surviving mom,
Who thinks of me each day.

She wares a smile for others……
A smile of disguise .

But through heaven’s open door
I see tears flowing from her eyes

My mom tries to cope with my death
To keep my memory alive.

But to anyone who knows her
Knows it’s her way to survive.

As I watch over my surviving mom
Through heaven’s open door….

I try to tell her
Angels protect me forevermore.

I know that doesn’t help her….
Or ease the burden she bears.

So if you get a chance, talk to her….
And show her that you care.

For no matter what she says….
No matter what she feels.

My surviving mom has a broken heart
That time won’t ever heal.

Sunday April 24, 2005

Happy 2nd Birthday Christopher 

                      1st Birthday in Heaven

…And so it came to be, the beautiful little boy with blond hair and blue eyes was born to the mama and daddy who didn’t know if they could have a child

…he was a miracle

…everyone loved him so much

…he melted the world with his smile and his heart

…he became very sick

…he fought

…the world fought with him, people prayed and prayed, fundraisers were held, meals were made, and his mama and daddy got on their knees everyday at the alter and asked God to heal their little miracle

…a love that was never known to exist entered everyone’s life

…the beautiful little miracle boy died

…and we love him and grieve for him everyday….

Happy Birthday beautiful baby we love you so much!!!!!!!! We hope you are having a wonderful day in heaven. We prayed to God all week and asked him to give you a birthday party, the best party ever. We hope you have big red balloons, a cake with Elmo, and all the banana yogurt you can eat!!

This week was awful – to be honest it was hell. The pain in our hearts, another reminder he wasn’t here It felt like we were loosing him all over again. Christopher’s first day of life was in the NICU, his first birthday in the PICU, and his second birthday in heaven. Such a bitter sweet day. With birthdays come hopes, dreams,  laughs and giggles. I hope Christopher is finally having a happy birthday in heaven. Everyone deserves a birthday free of pain.

The days leading up to his birthday were indescribable, however, sick and hurt Christopher (along with us) have been, God has surrounded us with love and Christopher’s beautiful spirit. Last year on Christopher’s birthday we started off the day on the research floor and ended up in the PICU. Our angel nurse Becky made sure Christopher had a proper birthday with hats, plates and a cake. Our nurses baked cookies, brought balloons and gifts, and surprised us by decorating his room. When I was unable to provide a birthday celebration for my child, God put people in our lives to provide for us. He did the same today.

We went to the cemetery this morning and had a wonderful surprise of balloons and cards on Christopher’s gravesite. I got on my knees and cried. I finally felt a small ounce of peace by knowing he hadn’t been forgotten. Joe and I planted flowers along his graves. Our beautiful friends have taken care of us with this week. Once again people from near and far, all of Christopher’s “Aunties and Uncles” (Becky, Matt, Brian, Becca, Lala, Angie, Laura Q, Corey, Fimbels, Masses and Thomases etc…), and even strangers that have become friends. We have also received so many phone calls, e-mails and cards, that overwhelm us. Our friends even decorated Christopher’s grave for his birthday and brought us over a homemade birthday cake today, every birthday needs a cake. Joe and I put candles on the cake tonight and sang “Happy Birthday” to Christopher. I had made up a birthday song last year I sang to Christopher all the time, I’ve been humming it all week. We hope Christopher hears his songs.

When Joe and I were at the cemetery we both felt Christopher speaking to us. He each told us at separate times he was OK.My God, we are blessed and so lucky.  We are so grateful Christopher continues to reach out to us and “talk” with us. We are so grateful for all the wonderful people that continue to touch our hearts. Your actions truly have changed our lives. Their will never be enough words to express thank you.

Pastor Don came over tonight. He told us Christopher will never be forgotten. It was music to my ears, next to the words “Happy Birthday Christopher.”

Sunday April 10, 2005

It has taken me almost 10 months, but I have finally taken the baby food out of the cabinet. I moved it from the cabinet to a box, the box is still in the kitchen. I know taking baby food out of a cabinet sounds like such a little task, but it was one of those “huge events”, that yet again signaled he won’t be coming home. Taking the food out of the cabinet brought back a ton of memories. Almost every jar had bananas in it! After chemo Christopher’s taste buds changed, and the only thing he ate was bananas. I had written about this last year, and once again I felt like “Forrest Gump”. I’m sure everyone remembers the famous scene of Forest and Bubba talking about shrimp cocktail, shrimp creole, shrimp salad, etc… In my case it was bananas with strawberries, bananas with yogurt, bananas with oatmeal etc… It was a hard weekend, but this silly memory made me laugh for just a moment.

As of today there have been 40, 358 hits on this site! I can’t believe it. There have been many times I have thought about stopping and not updating, but I can’t do that. My hope is that Christopher’s spirit lives on and touches the lives of other children out there. So I have decided to EXPAND the site.  Coming in May (after I finish my final exams):

Christopher’s Caterpillars,

Helping children and families with genetic and chronic illness learn how to fly!

I am going to build a website to help other families going through illness, and hope to provide a comprehensive resource site. It will feature everything from how to give an infant with a central line a bath, to insurance info, to how to decorate a child’s hospital room, etc… Most things will be based on my experience, however, any suggestions anybody has are welcome and appreciated, and will be incorporated. Hopefully this will help other families starting this journey.

Sunday March 27, 2005     Easter

Last year at Easter we were at the Children’s House. Christopher was only out of the hospital for about 3 weeks and we got to spend Easter together as a family, so thankful for all our blessings through transplant. Today Joe and I sat in church and watched Christopher’s beautiful cross walked into church and placed at the front of the alter. We could not have been more proud. After church we went to the cemetery as we do every Sunday. Through the pouring rain I put his Easter Basket on his grave and told him we loved him. His basket was complete with a new Elmo, a Care Bear and a big pair of bunny sunglasses. Christopher use to have to wear his sunglasses for his PUVA treatments and the bunny sunglasses made me laugh thinking of him. All week I’ve been in a panic. Is there an Easter Bunny in heaven? Will the Easter Bunny come see Christopher? I hope all the little children in heaven are having the best Easter party ever, I hope the Easter Bunny came.

Our wonderful Dr. Kahler called us last night. He was an answer to a prayer. We talked about transplant again and everything that happened. He assured us we did everything right. I think Joe and I have finally come to peace with all the decisions that were made regarding transplant. We were just trying to save his life.

Exciting events this week for BOTH children. We had a fetal echocardiogram of Katie’s heart done. I am now at 20 weeks, and this is the time the doctors look for heart defects. Because of my cardiac history, their is a 10% chance she could have one. So far, everything looks good! We will have another echo of her heart after she is born to double check everything. The cardiologist said everything looked “normal”. I cried, I told her we hadn’t heard that word very much.

Joe and I met with a wonderful person from the “Believe in Tomorrow” foundation. Believe in Tomorrow is the organization that sponsored the Children’s House at Hopkins where we stayed. They are currently building apartments for long term families like we were. Transplant families can live in an apartment type setting vs. the one room we lived in. We are going to build a memorial/butterfly garden at the new house in memory of Christopher. Joe is also going to help them through our “Laptops with Love” program (see How You Can Help) to help get laptops to all the families staying there. E-mail and the internet is the only communication with loved ones people have when they are so far away from home. They also asked if we would help with some new pain programs for children. Very exiting – I love doing stuff to help the children, it makes me feel like I am doing something for Christopher. I love him so much I don’t want him ever forgotten. Church was very comforting today. People came up to us and told us how they remembered Christopher. It made us feel very good, we miss him so much.

Christopher at Easter last year, April 2004

Playing with my present from Easter Bunny                                                                                                               Christopher and his ladies

Sunday March 13, 2005

I still expect to wake up and have this nightmare end. I think any moment Christopher will come toddling through the door and the nightmare of the past year will be over. I’m still waiting for him to come home – for everything just to be a bad dream. The pain is still sharp and suffocating every day. It still takes every ounce of strength just to get up and make it through the day. I just miss him so much.

I went home this weekend and attended church with my parents. The sermon was beautiful and spoke right to my heart. It talked about how wonderful heaven is, more grand than we could ever imagine. It helped me to refocus my thinking. I have to remember as a mother I want the best for Christopher. God thought the best thing for him was to be in heaven, so he would have no more suffering or pain. If this is the best thing for Christopher, which it is, I have to accept it, and keep it centered in everything I do and think. He’s not attached to machines, or tubes. His spirit was too strong for his body and now he is flying. I just miss him…..

Saturday March 12th, 2005

Another month has passed and another 11th goes by.  We miss him dearly.  Sometimes we wonder if its all a dream and he’s coming home tomorrow.  But we know the truth….  He is in heaven playing with all the little girls.  What a ladies man.

Thank you for all the wonderful book donations, we have over $1100 in donated books!!

The total count was about 70 books donated to the Children’s House at Johns Hopkins Hospital and to the Ronald McDonald House at Fairfax Hospital.  The Children’s House is so excited about the books.  They really needed an upgrade…  Our awesome friend Gwen Meehan did all the work and we are so thankful for all her efforts.  She is a very special person and has two wonderful children.  Here are pictures of us and the books.

 

So we are 18 weeks pregnant this Monday.  Mom and baby had a check up on Thursday.  Paige had another sonogram and they heard her kicking and the pitter patter of her heart.  She is having a lot of trouble eating because of constant nausea.  She hasn’t gained any weight but the doctors are not concerned.  This happened with Christopher to.  I think she looks great….  Just a husbands opinion.

We had a little bit of a problem at the cemetery this past week.  First off several things were missing from Christopher’s grave on different occasions.  We talked with the Manager but found out this is a common occurrence and since they do not have 24×7 security there is not much that can be done.  They installed the bench last weekend, another huge ordeal.  They put the wrong bench in the wrong place, forgot to install the vases, glued the cameo on crooked, made a general mess around his grave and to top it off the epoxy did not cure and the base separated from the bench and slid about 6 inches.  So we were very upset to say the least.  We marched inside the funeral home and made a big fuss until we got a manager.  So far they have been very responsive, the bench and base were removed within an hour, the site has been re-graded, grass seed put down and the marker moved to accommodate the proper bench location.  They reseated the bench on the base and reseated the cameo also.  The vases have been attached and they plan to install this week when the weather warms up and the soil settles around Christopher’s plot.  The whole situation was extremely upsetting to see his grave in such disarray when we try to keep it so beautiful and childlike.

Sunday February 6, 2005

…And than there was life…

…And than there was hope…

 

After Christopher died, I prayed and prayed for him to send down a brother or sister for us to love. I told him when the time was right, to please send one down. We loved loving a child, and still have so much love to give. Being the sweet boy he is, he sent down one of his siblings.

I am 13 weeks pregnant with a little girl!!! We found out Friday she does NOT have Hurlers Syndrome or any genetic defects!

We had Choronic Villi Sampling (CVS) done about two weeks ago, and have been dying to get the results back. The CVS is done under ultrasound and the doctor inserted a needle into my stomach and removed Choronic Villi (the beginning stages of the placenta) when I was 11 weeks. From there two things were done, a DNA analysis and an enzyme test on the cells.

The DNA analysis showed there were no genetic abnormalities like Down’s Syndrome, etc… The DNA analysis is how we  know it is a girl. The second thing that was done was the CVS was sent to Jefferson Medical Labs in Philadelphia. At Jefferson Medical Labs they tested the cells to see if there was any enzyme activity. All a person needs of this particular enzyme to be unaffected is 0.16%poor Christopher had 0%. There is a lot of confusion on prenatal testing for Hurler’s. The ONLY type that is being done is enzyme analysis, and Jefferson Medical Labs is one of the only places. Late Friday we found out that Baby Katie does have enzyme activity, meaning she does NOT have Hurler’s!

The past two weeks have been a living hell waiting to find out what was going to happen. We had that old “knife in our chest” feeling like we use to have every day at Hopkins. We forgot what it felt like, where everyday our chest felt like a knife going in it and we were waiting for ANOTHER answer to a test result that could change our lives. So painful……..

We went to the book store on Friday and Joe was just beaming. He told the clerk I was pregnant and she asked if this was my first. No, I told her, this is my second. I have two children. One who will live in heaven and one who will live on Earth. As a mom I will just be doing “different” things for each of my children. For Christopher I will always be honoring his memory, hoping to support other families whose children are sick, holding an annual blood drive and fighting against this awful disease. This is not the end of the story of Christopher, it is ongoing as long as I live and breath. For baby Katie I will one day be going to Brownie Scouts meeting, recitals, and visiting her at Virginia Tech. I have two children now, that will NEVER change.

As a good friend said, this is a victory against Hurler’s Syndrome and ALL genetic diseases that take the lives of innocent children. These diseases rob children and families of so much, it is truly devastating.  For the first time in a long time, I feel like I have kicked this disease in the face and knocked it down. I still (and will everyday for the rest of my life) mourn for Christopher. What these diseases can’t rob or steal from us is the love we have for the children. Nothing can take that love away.

It figures Christopher would send us down a girl. He LOVED the ladies so much, he probably has had a blast in heaven hanging out with all the little girls and picking one out.

For now I must run….. I have to be at work in a little while, and want to run by and put Christopher’s Valentine present on his grave. It’s a red “crazy man” doll with purple hair that sticks up, just like he use to look when he got out of the tub.

 

Tuesday February 1, 2005

Usborne Children’s Books

 

 

In memory of Christopher our good friend Gwen has organized a book sale where donated books go to the Ronald McDonald House at Fairfax Hospital in Falls Church, VA.  The books are published by Usborne books.

The idea is that people will buy books for themselves or buy books to donate in Christopher’s memory.  All books earned by the book fair will be donated to the Ronald McDonald House.

 

If you’re interested in supporting this cause, please visit the book fair site – www.ubah.com/BF15392

 

If you want to order books to be donated, then select the shipping option  Send to Organization

 

If you want to order books for yourself, then select Send to Billing Addressor Send to Shipping Address

 

If you’d like to order books AND donate books, you’ll have to do two separate orders.

 

The book fair will close on Feb 8.  Gwen will lose her Usborne website on Feb 10, and can’t extend this beyond the 8th (Gwen has to process everything online before she loses the site).

Please help us in supporting such a wonderful cause.

Sunday January 23, 2005

Please remember to donate blood, platelets and bone marrow!

It truly is the gift of life for so many people!

We have had 37,870 hits on this website. Thank you so much for letting me share Christopher’s life.

Saturday January  22, 2005

Day 0, “Take 2” + 1 year

Christopher received his transplant 1 year ago today

One year ago today, at this exact time, we were just out of surgery. As many of you may recall, Christopher had 2 Day 0’s because Christopher’s central line kept failing. We were waiting for the precious bag of stem cells to infuse into Christopher and give him the gift of life. Like the champ he was, he handled the transplant beautifully, I have pictures of him during the transplant on the “photo gallery” page. The only thing I could think of that day was how grateful I was to the mom who decided to donate her daughter’s umbilical cord (which we took the stem cells from). A complete stranger, who we never met, made an unselfish gift and gave us hope and a chance. The only thing we knew about the donor was the cells were about 3 1/2 years old (which meant the child was 3 1/2) and from a girl. It figures the cells came from a girl, Christopher loved women

 

 much. I hope somewhere that mother is happy and blessed for the blessing and hope she gave us.

A year ago we had so much hope. Never in my wildest nightmare did I think things would turn out this way. Christopher engrafted (accepted the cells) so quickly, we just knew everything would be fine. In class last week they asked us why we were going to school to become Nurse Practioners and who our “role model” was. I said mine was my son Christopher, he taught me the beauty of life, he taught me what this world was truly all about.

I remember many nights looking out of the window from the hospital at the snow coming down. The snow was so peaceful, I could always take a deep breath when it snowed because I knew next year Christopher would be playing in the snow.It’s snowing today, the “storm of the year” (which turned out to only be 3 inches). I wonder if it’s snowing in heaven today. I hope it is. I hope all the baby angels are throwing snowballs and building snowmen. All the children whose bodies on Earth made them hurt, their bodies whose little arms and legs couldn’t move or had a terrible disease that stole their lives. I pray they are all free, and enjoying being children, children free from pain and suffering. Children free from the tears and pain their mommies and daddies must experience everyday. I think about Christopher every second of every day.  Even when people think I am “OK”, I’m secretly wishing for my boy. I have to remind myself I have to experience this pain of loosing him so he won’t be suffering or hurting anymore.

I found this poem on the internet and thought it was beautiful.

A Grieving Mother

I am going to your grave today

with flowers orange, yellow and red

I’ll throw away the faded ones

and leave fresh ones instead.

I’ll stand above the place you lay

placed there a while ago

And once again my heart will break

and unchecked tears will flow.

With gentle fingers I’ll caress,

your name carved in the stone

Then brush away the fallen leaves

November winds have blown.

I’ll dry my eyes, I’ll say a prayer,

and as I raise my head.

Another grieving mother has just

tucked her child in bed.

-Author Unknown

 

Good night, I miss you Christopher. I love you and I am so proud of you!!!

Thank you for all the people you put into our lives to take care of us when you left.

Thank  you for all the signs you give us to let us know you are OK.

 

Sunday January 16, 2005

Day -5 + 1 year

7 Months an Angel

To all the wonderful people who have been checking in on us -thank you. I’m not sure how many people still check this site, but than I started counting and we still get a few hundred hits a month. I apologize for taking so long to update, I have not had the strength or courage to update lately- for this I am sorry. I am thankful for the kindness and love of so many people. Many people we have met have told us about friendships and people they lost in their lives due to a person’s death. They suffered a double whammy – the loss of a love one, and the loss of a support system. We have lost contact with only a few people. We have been overwhelmed with love and support, kindness and grace. People near and far never forget us -even now. God has blessed us with a support network of people who remember Christopher and us, and remember the pain we continue to experience. We are so thankful for the angels who support us. The friends, co-workers, sorority sisters, Hokie friends,  strangers, everyone in the world.

The holidays came and went, our first without Christopher. We attended the MPS conference the week before Christmas which was a wonderful experience. We got to meet our other friends with MPS disorders and talk to the children and parents who suffer from the diseases. We listened to the doctors talk and heard about treatments and clinical trials. We’ve come a long way in research – yet there is so much left to be done. Joe and I sponsored the daycare in honor of Christopher, and it was my honor to do so. The children all made us a special gift. They put their little handprints on a sheet and put their names on it. They are the most beautiful children in the world. It was the best Christmas present I have ever gotten.

It’s hard to believe we were in the middle of chemotherapy one year ago. We were at Day -5, fighting central line problems and looking forward to day 0, our transplant day. We were waiting for the gift of life. I look at the past entries from that time, and it makes me so sad. Christopher was so sick and fighting so hard. I am so proud of him!

Lately the sorrow has over taken me and is like a dark cloud going everywhere. Somedays I am at peace, others I just want to scream. This grief journey is like the roller coaster I described in “Carnival by the Sea”. Somedays are up, others down, most are scary. I feel I am getting use to a new life, a different me. A life that tries to incorporate Christopher everyday in every second.

I’ve started working on my  Masters in Nursing, Nurse Practioner at George Washington University. I think about how if Christopher were here I wouldn’t be doing this. I look at Belle (beagle puppy) and again think about how if Christopher were here we wouldn’t have her. It’s like 2 forks in the road. I’m traveling the fork I don’t want to be on, looking over at the other side (which would have been a life with Christopher) at what I miss and wish I had. The fork I’m on now is scary and twisty, I don’t want to be on this side studying Pharmacology and house breaking a crazy beagle.  I  miss being on the other side with Christopher, however I must accept the new path, as much as I don’t want to. There is no where else for me to go. I need to remember how lucky I was to have him, if only for a short time.  I’m proud he chose me to be his mama.

I’m sorry this update isn’t as positive as many of the others. With the holidays and the anniversary of chemotherapy, my heart get overwhelmed with emotions. I’ll write more at the end of the week, on the 1 year anniversary of Christopher receiving his transplant.

Monday December 13, 2004

Faith, Hope and Love

This verse from 1 Corinthians 13, was read at my wedding. We will be married 7 years come this April – time to start saving up for the 10 year anniversary band Joe! Just kidding – Not really ? This verse is commonly read at many weddings. When I got married almost 7 years ago I had no idea what these words meant. That’s all they were – words. These 3 words Faith, Hope and Love have now become my  foundation and what gets me through the day.

Faith – Faith that there really is a heaven, and a God. Faith that one day I will see Christopher again and we will be together forever and ever.

Hope – I believe Hope is the strongest of these words. Without hope their is nothing. We held out hope until literally the second Christopher died. When he died I kept his car seat in my jeep, and his highchair and swing in the kitchen where it was when he was alive. His room is still the same. All these things represent Hope. Hope, one day Christopher will send down one of his brothers or sisters for us to love -hope we can love a child again. I also have HOPE one day we will find a cure for this awful disease and all diseases that cause pain to children. After Christopher died I lost Hope for a little while but it came back. No matter what happens in life, one can never, ever loose Hope. Hope is really all we have. Everyday I cling onto hope like it is a lifeline. I can’t let go or I will drown.

Love – I love Christopher. I love my husband, my family, my animals, my patients, my friends and all the people God has put into my life. I love Christopher, I love Christopher,  and I love my Christopher.

One of my best friends cross-stiched me this beautiful verse for my wedding present. I now look at this everyday with fresh eyes and appreciation of the true meaning of 1 Corinthians. At Christopher’s funeral Dr. Kahler talked about Faith, Hope and Love. These 3 words are the foundation for life, it just took me a while to figure it out.

Sunday December 12, 2004

I apologize for not updating sooner. I didn’t know if people still checked the site, but I got an overwhelming response from people checking on us because I had not updated in a while. Thank you to all who check on us.

Christopher’s been an angel for 6 months. It’s hard to believe. He has been gone the amount of time we were in the hospital fighting for his life. We were at Hopkins for over 6 months, having started our journey one year ago this December. November and December have been difficult months, it brings back many memories of when we first started at Hopkins. The past year has been overwhelming, I don’t even know how to express it in words. I could never have dreamed, in my wildest dreams, everything that would have happened. It was a horrific tragedy, however it was permeated with Christopher’s spirit that was so strong and so beautiful. The past year has brought new people, events, and places into our lives. I think what I am trying to express is how out of all the darkness, all the tragedy, we have been truly blessed by all the things God has put into our lives.

Our first Holiday, Thanksgiving came and went. When trying to be thankful for the year I thought this has been a pretty crappy year. However, the list of things I am thankful for are overwhelming.

I am thankful for of all the mama’s and daddies in all the world, Christopher chose us to be parents. He gave me the greatest gift in life, to be his mom. He gives us “signs” everyday. I have learned to “talk” with him. I tell him how much I love him, and am proud of him. I tell him how grateful I am to be his mom. I also tell him when he gets a chance if he could give me a little sign to let me know he is OK. Usually not more than a few hours will pass until I receive his sign.

I am thankful Christopher is no longer in pain. I want him here with me, but if being in heaven is where he needs to be so he is not in pain, than I must accept this – As painful as it is.

I am thankful for everything. The people who came into lives, and continue to show us we have a reason to live and cherish his memories. Not a week goes by we don’t receive a card, care package, phone call or e-mail from friends checking on us. To our angels, you have no idea how much you change our lives when you do this. Santa’s secret elves came early to see us early this year. Joe and I pulled up from work last week, and the front of our house was decorated with lights, garland, a wreath and Christmas mat. I had been “anti-Christmas” this year, and the house became so special after it was decorated. That morning I had been in the rocking chair in Christopher’s room, and asked him for a “sign” he was OK. Well his sign came through loud and clear! A few days later Joe went out, surprised me, and bought a mini Christmas tree and had decorated it with Christopher’s ornaments. I got home from school, and their was Christopher’s tree. We took a mini tree out to his grave a few weeks ago and decorated it. He has the best looking grave in the cemetery.

I am thankful for one year ago today the first Christopher fundraiser was held.  People didn’t ask, they just knew and took us under their wing. I described Christopher to people a few weeks ago as a “community baby”. Everybody in the community knew of him and supported us. The “sandwich mania” fundraiser was held and the money helped us with medical bills and to continue to live.

If I try really hard to hold onto everything I am thankful for, it helps get me through the day. It is hard, a constant struggle, but I must remember all the things Christopher gave us.

I have learned even though Christopher is dead, I can still “feel” him. I feel him in my heart everyday. I tell Joe I can feel him, but I can’t touch him. I don’t have many “why me” or angry days. I found when I had these I became disconnected from Christopher and felt further away. Most of the time my response is “I know why he had to die. I don’t know why he had to be sick to begin with. I just miss him.” I have learned through Christopher dying, how to have a new living relationship with him. We go to the MPS conference in Florida this week. I’m so excited. I think I’ll probably fall in love with all the children, and feel even closer and deeper to Christopher.

Thank you to everyone who continues to provide support and love to us. We are so proud of our Christopher for bringing you into our lives. I often said Christopher knew he was going to become an angel and put all these people in our lives to take care of us. He did a good job.  I miss my boy.

 

 

 

Christopher at Christmas last year

 

 

 

 

Saturday December 11, 2004

6 months an angel, Forever in our hearts

We love you Christopher

 

Saturday November 13, 2004

So I have come to the conclusion life is different – it’s changed and will never go back and I need to accept that. Christopher died and life is different. Joe and I are different people now, the things we think, the way we look, our priorities – everything is different. And you know what, that’s OK.

Things can never be the same, and I don’t want them to be. When you became a parent, life changes. When you receive the diagnosis of a terminal illness, life changes, and when that child dies in your arms – you change forever. I spend my days praying and thinking of ways to help all the little children out there suffering. I dream of angels and butterflies at night. I’ve had to give up a sense of “control” over my child. As parents we always have some type of control over our children. Where are they? Are they OK? Are they happy, are they hungry? All the natural worries. I have had to learn to give up this natural mother’s instinct and trust in the angels who are in heaven with Christopher and are taking care of him until one day I can join him again.  It’s so hard to let go of a natural mother’s instinct! This has been one of the most difficult parts.

I have to accept our “new normal”. Incorporate the pain into the daily stuff and combine the two together – together they create a new person. I’m just now getting used to the new person and learning to live again. I have to look for the signs everyday from Christopher and know he is OK. If I keep my eyes open to the signs, no matter what it is I can keep on going, whether it be from the feather laying on the ground in front of feet,  or  the special song on the radio. I have a new heart too, I know Christopher is with me and I can feel his presence – I must get use to the new heart.

I wasn’t going to put a Christmas tree up this year. I love Christmas and don’t have the energy to put a tree up this year, what for? I than decided I’m going to put a “Christopher” tree up. I ordered a few strings of Elmo lights I’m going to put on a 2 or 3 foot tree. I’ll put angels and butterflies on it and it will be Christopher’s tree. He still deserves to have a special  tree on Earth, and he always will.

Thursday November 11, 2004

“5”

5 months an angel today

Christopher became an angel 5 months ago today. I can’t believe it has been 5 months. Sometimes it feels like an hour ago, sometimes it feels like an eternity. There are certain things Joe and I have come to peace with. We know why he  died and why he became an angel. We truly believe God spared him future pain. However, we don’t understand why he had to have this disease – we will never understand, I think we are not meant to understand. Every day we try to comprehend it and make sense out of him being sick and dying – most of the time it doesn’t work. The 11th of the month is so hard for me. The whole week before I feel sick and can hardly function. I guess it’s the anticipation and reliving the awful day.

Joe and I went to the cemetery today, we still go every week. His headstone was in and looked beautiful! It was a nice surprise. The only problem is they installed it crooked on the marble, so if you tilt your head to the left it looks straight. Tomorrow I must call and get them to fix it.

The pain is still devastating. I’m currently in a period where I’m just numb to the world. It takes more energy than you can imagine to just get out of bed, go to work, and pretend to “live”. The holidays are hard, and this time of year was when we were really thrown into the start of our journey. We started with Hopkins in November, when I look at my earlier updates I’m reminded of the day to day struggle. It feels weird to look at those updates and remember those days. Now we live such “normal” days, and thinking about the months in the hospital is surreal.

We are going to the MPS conference for a week next month in Florida. There will be about 600 people there from around the world, and a lot of families from London, England. During the day we will be free to explore Disney World, and at night there will be sessions on the different MPS diseases. Their will be grief sessions, research sessions etc… At night during the speakers and sessions there will be daycare provided to the children. The MPS society called us yesterday and asked us if we would donate the money for the daycare so the kids could have a huge, giant TV to watch cartoons on. We happily sent them a check today. These children have such hard lives, if we can help with a smile for just a minute, it is our honor and privilege. After we sent the check I began to think…..

One of my visions of Christopher is him in heaven with all his friends watching cartoons. He is eating Yo Baby Yogurt all day long until his little tummy pops out of his PJ’s from eating so much yogurt.. (When I say friends, I mean all the little friends we have made along the way who lost their fight to MPS, cancer or other childhood diseases). In my dreams all the children are laughing at the cartoons and happy as can be. I thought of the irony of the MPS society asking us to donate money so the kids could have a TV to watch cartoons on. Another sign Christopher is OK and he is with us….. I took Belle (puppy) for a walk today and found two white feathers. Another sign…… But, we just MISS him. Every second of every day, it’s a nightmare that never ends. We are sooo thankful for the signs Christopher gives us. We pray to him to let us know he is OK, and he never fails to give us a sign. We just have to keep our eyes open to see the signs, they are there.

On the home front, we are getting by. I got accepted into the Nurse Practioner program. It is a joint program between George Washington University in Washington, DC and George Mason University here in Fairfax. I’m still working and going to school so it will take me at least another 2.5-3 years to finish.  When I’m done I will be able to work in a hospital, office or clinic and have prescription authority and see my own patients.

Belle (puppy) has put a kick into our day. Joe’s been home for three days with some sort of “plague”. I’ve never seen him this sick. Luckily the dogs are helping take care of him. We said this morning Christopher probably sent Belle to us as a joke. Christopher never crawled, or walked, never “got into stuff” the way babies do. Well Ms. Belle is certainly making up for that and is into everything!!!!!!!!!!!!!!! She also snores so bad I got up the other night and went and slept in the other room, didn’t want to disturb the dog.

 

Sunday October 31, 2004 Halloween

Today is Halloween. It’s so hard to believe one year ago today we took Christopher trick or treating. He had just been diagnosed and we were devastated and ready to fight. We took Christopher to our best friends house and just sat on the front porch with him. She held my hand and we didn’t say a word, we were all scared, but I knew we were blessed to have people stand beside us in our journey. Christopher should have been here today so we could take him trick or treating. But he’s not……

My sister got married last weekend. It was a beautiful wedding for a lifetime of happiness. My mind kept playing tricks on me. I kept thinking he was there, and would have to keep reminding myself he wasn’t there. I could feel his presence, as I always do, and know he’s with me. I guess I kept envisioning him in his little tuxedo with hair, the way it should have been, not the picture of him in his tuxedo in his casket (he was buried in his tuxedo). My sister’s wedding was such a significant event to me, and a “goal” I worked towards with Christopher. Get him well and walking by Lindsay’s wedding so he could walk my mom down the aisle. But he’s not here…..

Before my sister’s wedding I went through his clothes to find something special to take with me to the wedding. I than noticed all his clothes have little pin holes in them. It than reminded me of how I use to buy “central line friendly” clothes so I could pull his central line outside his shirt and pin it, so it wouldn’t rub up against his skin and irritate it. We still run into people who just simply look at us and don’t know what to say, they just look at us. We find we still have to give “permission” for people to talk about him. It’s Ok, we understand. As our minister said today, “only by remembering people do we truly honor them.

The days are still filled with so much pain, and so difficult to get through. There have been some events and “signs” from Christopher the past few weeks that give us a little bit of peace and know he’s not in pain and where he should be. But we wish he never had the disease, we miss his physical presence. Today was “All Saints Day” at Church.  A day to remember the loved ones who have passed. They read Christopher’s name.

So what do two people do who just lost their first child to a terminal illness and now feel all alone in the world? Adopt a sick puppy!! Yes, we adopted ANOTHER homeless critter to nurse back to health. Joe and I learned not to go to PetSmart on a Saturday, because that is when all the animal adoptions are and we would come home with something. So a few weeks ago we went on a Friday night thinking we would avoid the “temptation” to adopt. However, we were tricked, there was an animal rescue league there. We fell in love with a blond beagle who is 3 months old. She is the only puppy to survive, her brothers and sisters all died from Parvovirus and mange. Nobody wanted her because she’s currently immunosuppressed and I believe she has an upper respiratory infection right now. Her lungs sounded kind of junkie. When her “Foster mom” told us she was immunosuppressed and had a rough time, we just looked at her and said, “not a big deal, been there done it.” At the time we decided not to get her, too much going on. We told ourselves if she was still there in a few weeks we would have to adopt her. Well we walked into PetSmart last week and their she was. Immunosuppressed, yeast infection in the ears and a respiratory infection. So we had no other choice but to adopt her.

Her foster mom did great with her and she’s an awesome dog. She takes us to the door when she needs to go out, and just wants to sit in my lap and be loved the other times. We’ve had no accidents in the house, no bad chewing episodes, and she already follows command. The only problem is she SNORES very bad. I couldn’t sleep the first night we had her she snored so bad. So she joins her brother Nick (our yellow lab who currently has his nose bent out of shape and is having a power struggle) and cats Hokie and Pokie. However Hokie and Pokie will be moving on soon. I believe Joe has developed bad allergies to them and we are looking for a good home for them.

So I think I’m going to name her Bell (Nick’s name is Nicholas Snoopy, Bell is Snoopy’s sister). I had originally thought about naming her Hope. I believe she brings hope. I felt since she was the only one who survived she must be strong and have a lot of Hope. We believe Christopher brought her to us to give us hope, there are many days when we don’t much hope, and have mostly sadness. If she was a healthy, regular dog we wouldn’t have gotten her. We don’t want to be those “crazy people” who end up in the Washington Post with a million animals. Animals are therapeutic, and maybe she will bring us some hope.

Sunday October 17, 2004

One year ago today we heard the word “positive”, Christopher was diagnosed with Hurler’s Syndrome.

One year ago today our lives changed forever. I will never forget the day. The pediatrician told us he wanted to see us in his office. I asked the charge Nurse at work if I could leave early, and Joe went to pick Christopher up from Daycare. The office staff ushered us into a back room and Joe held Christopher. The pediatrician came in with tears in his eyes. He said a few words, and I asked, “Is the test positive or negative?” He told us it was positive. We all gasped for air and I thought I was going to get sick and faint. My heart started racing and I had to take another blood pressure pill, and lay on the table. I thought I was going to pass out. I couldn’t drive the jeep home, Joe drove us home in his car. I remember calling my mom in the car on the way home, and I don’t know what I said. I think I just got out the words “positive” and that was it. The pediatrician gave us the phone number of a local geneticist who we called that night, but couldn’t help us. This was too rare for even her.

And so it began………

The fight for Christopher’s life took off……….

We were blessed to have friends who immediately became a pillar of support. Every person we knew immediately got on the internet and started searching for ways to help us save Christopher’s lives. People brought us meals because we couldn’t think enough to eat. We started receiving bags of diapers, formula and baskets of baby food on our steps. Our wonderful friends just came in, and started taking care of us. This is one of the greatest blessings we ever received. Despite this horrible diagnosis, we had people surround us and love us to help us find a cure. Cards started pouring in. I made a card wreath with all the cards, too many to count but I saved them all. The card wreath has been hanging on the door in my living room for a year. We just took it down this week and replaced it with a Halloween wreath Grandma Mig made with Christopher’s picture on it.

So many emotions today. I can’t believe one year ago today this spiral started. I was looking over some of my past “daily updates” I have made, we were always filled with such hope and optimism. It never crossed our mind Christopher wouldn’t survive. Hope was the only thing we had than, and today hope is the only thing we have now. Our hope for today is he is no longer in pain, free for his beautiful spirit to soar. Without this hope Joe and I have Christopher is at peace, their is nothing. We no longer have the honor of seeing him grow up, just the pain of what could have been if he didn’t have this disease

Christopher gives us signs he is OK, in his own way. I was cleaning the bathroom on Friday and found a tiny white feather in the corner. We don’t know how it got there. We receive phone calls or e-mails that help us answer questions or help us hold on when days are really bad. The pain gets worse everyday. The hole in our hearts is suffocating and we can’t believe what the past year has brought us. Pain that is incomprehensible and suffocating, pain that never quits, even for a second.  We can’t believe our baby went through chemotherapy, transplant, surgery, and died. We can’t believe Christopher died. And yet….. Christopher showed us the beauty of all the people in the world and how strangers can pull together all for a common cause, life. We’re so proud of our boy.

I found a quote in the paper this week I would like to share, I’ve been saving it for today’s entry. It talks about the passing of actor Christopher Reeve.

(Washington Post; October 12, 2004, written by: Chip Crews, page C5, last paragraph)

We celebrate life, we love life, we tell ourselves life is good. And yet very often when someone dies we force a smile and whisper, “You’re free.” Whatever the person’s pain or rage or thwartedness it’s powerless and gone, never to return. It’s a comforting perspective when you look at Christopher Reeve. And it’s even nicer to think that maybe somewhere he’s awakened this morning, frisky as a colt, and gone off for an aimless run.

I hope somewhere Christopher is riding on Superman’s back, and they are flying far above the heavens free from pain, laughing, and at peace.

** My wish would be another child would never have to be in pain and die from a horrible disease.***

Monday October 11, 2004

“4”

4 months ago today Christopher earned his wings and became an angel.

Yet, another anniversary. 4 months ago today Christopher died in my arms. There is that old saying, “Time heals”. I don’t know who invented it, but they never lost a child. The days seem to get harder and harder. This month is full of anniversaries, another angel day, the anniversary of Christopher being diagnosed is next week, and Halloween. My sister is getting married in less than two weeks. Christopher was suppose to walk my mom down the aisle. Instead mom will hold my handkerchief walking down the aisle, instead of a little hand. She will hold the handkerchief that I carried at the funeral, it was his bonnet that was one his head when I brought him home from the hospital.

Joe and I took today off work. We went to his grave and decorated it for Halloween.  The 11th of the month is our day. The other days of the month, we look “fine” to the outside world. We work, go to school, do all the stuff of the living. What people don’t see is there are days where I cry for hours and collapse on the floor. We were in a store the other day and saw the new dancing Elmo that is out, and a baby was crying next to us.  Christopher loved the dancing Elmo’s. When I would change his central line dressing, Hokie Pokie Elmo kept him entertained and calm. I ran to the bathroom and got sick when I saw Elmo and heard the baby crying. It’s events like this that still happen and will continue to happen. I know this is hard to read, but I started this website to help others. Maybe there is another family out there grieving like we are, and knowing our experience will help get them in their time of grief.

“Superman” went to be with Christopher in Heaven this weekend, actor Christopher Reeves died yesterday. When I heard this today I just knew Christopher was with Superman. Both “Christopher’s” made such a difference in this world. My Christopher helped blaze a path for other children with this syndrome. Actor Christopher Reeve was an advocate for stem cell research and paralysis Both “Christ”ophers, are truly angels put on this earth. (When voting for President in November please remember stem cell research when casting your vote. It truly can provide a cure and we need more research, and more stem cell lines to be opened up . It is the only hope we have to cure diseases- Ok, I’ll get off my soap box now).

I hope Superman is playing with all the children in heaven. I think he is. What I do know is Christopher’s beautiful spirit is free from his body that held him back.

Joe and I have both gone into a numb state. Last year at this time we were worried Christopher might be partially deaf. He failed his newborn screening hearing many times and we were seeing hearing specialists. October 17th changed all that.

Tuesday October 5, 2004

Fall is here, and in our family that has always meant College Football – Virginia Tech Hokie football. Hokies are the most loyal alumni you will ever meet. Our cats are Hokie and Pokie, and our dog wears a Virginia Tech collar. As you have seen in our picture gallery, Christopher supported his team and wore many Virginia Tech outfits. My favorite is  him in his Virginia Tech jersey. We just knew Christopher would  be quarterback one day.

I had always dreamed of taking him to his first game, putting him on Joe’s shoulders and taking him into the beautiful stadium. I dreamed of our friends tailgating together every fall with the little ones in their “baby Hokie” gear, and Christopher growing up knowing the love of our great school.

Being the  loyal Hokies that we are, Joe attended the Virginia Tech vs. West Virginia game in Blacksburg on Saturday. He went with his college friends. Our loyal friends who were the groomsmen in our wedding and the pallbearer’s at our son’s funeral. They have always been by our side.  As Joe was watching the game, along with 62,000 other fans, a red butterfly flew past Joe in the stadium. Our friend saw it too.  Tech’s school colors are maroon and orange. I guess Christopher was dressed in his Hokie colors and at the game with his dad.

Sunday September 26, 2004

We want to thank everyone who attended the blood drive today!!! We had an awesome turnout, and will find out later in the week how much blood we collected. Many people came out, and we know at this point over 40 people donated and we got at least 40 units (some people had to be turned away for colds or allergies). Thank you to everyone! Christopher used so much blood during chemotherapy and the blood banks are so low. Hopefully this will help.

There is a dull ache in our heart every second. We look at pictures of him and think about how good life could have been if he hadn’t had this disease. But maybe he wouldn’t have been Christopher.

Saturday September 25, 2004

We went to visit Christopher at his grave today. We still go a few times a week. There were white feathers all over his grave and surrounding it. We figured he had been playing a little too hard in heaven and a few feathers fell out of his angel wings. We hope he was playing with his brothers and sisters he will one day send down to us.

Monday September 20, 2004

Sunday September 19, 2004

Christopher’s Cross

We were so honored today to be able to donate a cross to church in honor of Christopher. When he passed away we started the Christopher Memorial Fund at church. A fund we can use to hopefully do wonderful things with in honor of Christopher. A few months ago we were approached about donating a cross to the church. It will be a fixture in the front of the church. It is a big brass cross, that will be walked in during special occasions (Christmas, Easter, etc…), and will be there permanently the rest of the time. There was a beautiful dedication at all three services, and Joe and I said a few words dedicating the cross, with the pastors and congregation also saying a prayer of dedication.

As I looked at the cross, the first thing I thought was I could not have been more proud of Christopher. Had he grown up and attended Harvard or Yale, gotten 10 doctoral degrees or been President, there would never be a day like today. His cross looks so beautiful, I am so proud of my son.

Joe and I forgot many things about his illness and have to be reminded of certain things. I forgot I had started “Operation Wallpaper” for Christopher at the beginning of our transplant journey and decorated his hospital room like his room at home (for our newer readers see our beginning entries that talk about Operation Wallpaper). The very first night we got to the hospital I had filled his room, the parents lounge, and the halls with decorations. I forgot about the leather chair I use to sleep in and hold him in at night until I was going through my phone yesterday. I have a cell phone you can take pictures with, and had forgotten I had taken a picture of him sleeping on the busted red chair. When he went on “strike” against the crib, Joe and I use to hold him in the chair beside us and try to sleep.

I guess our minds help us to forget certain things, the good with the bad.

However……

Christopher will not let us forget he is still here with us.

My paper towel dispenser at work, the beautiful cross at church, and the constant vision of butterflies EVERYWHERE!!!! Of course, as always, he still has our friends and family surrounding us, sticking by us, and pulling us along. We looked out in the congregation today, and there they were. Our angels Christopher sent to take care of us, still by our side, at all three services. Once again you helped us get through another day. Our friends who still call, take us out to lunch and let me cry on their shoulder at work. Our Hokie buddies who help us laugh (and have an occasional drink or five every now and than). I still go to his daycare and see his teachers, there not his teachers anymore, they are our family. And our wonderful Dr. Kahler, you still take care of us like you took care of our boy. Whether you are remembering us on certain anniversary days or currently helping me with my statistics homework, you never forget us. We love you….

So to my  angel Christopher:

I love you my angel. I’m so proud of you. There are no words that express the pain in our heart because we miss your handsome smile so much. Pastor Don’s sermon today talked about children, and how one day we must see our children off  to college and the great world  beyond. It hit me at that moment, daddy and I had to see you off to heaven, and the wonderful eternity beyond so you could be happy, free from your pain and live your life. As much as we live in pain, it doesn’t matter, you are living your life in heaven, free from a body that caused you pain. Thank you our little butterfly for paper towel dispensers, butterflies, and friends. Thank you for taking care of “your second mama”, seeing her through surgery,  and helping her to have a huge medical miracle.

We’re proud of you and we love you!!!!!!!!!!!!!!

Friday September 17, 2004

The paper towel dispenser……

After running around like a crazy lady at work yesterday, I finally had the chance to stop for 5 minutes and wash up a little in the bathroom. As any nurse will tell you, being able to use the bathroom or throw some water on your face is a luxury and treat in itself during the day (especially when you work a 12 hour shift with what feels like a million traumas). As I washed my hands I turned to grab for a paper towel and stopped dead in my tracks. I gasped as I looked at the paper towel dispenser. I thought for a second I was going to pass out. We got in one of those “new fangled” paper towel dispensers with the sensors. You rub your hand in front of the  paper towel dispenser sensor and out pops a paper towel! The reason why the dispenser startled me so, is it use to be one of Christopher’s favorite things.

He only got to live at the Children’s House for about three weeks during  our time in Baltimore. At the Children’s House, there was the same automatic paper towel dispenser! Same color, brand and size. Christopher loved it, he thought it was the funniest thing he had ever seen. We would spend many an hour, sitting in the kitchen running back and forth and waving our hand in front of the sensor to make the paper towel come out. He would laugh and laugh, at just the simple site of the paper towel coming out. We would sit in the kitchen at the Children’s House when I was giving him medication or running medications in his central line. I forgot about the “good times” we had laughing at the paper towel dispenser.  There really weren’t but a few “good times” during chemo. By good times I mean a few days and weeks. But, I’ll take it and hold it in my heart.

I haven’t seen any other dispensers like this in my  hospital. Just in our locker room. As a co-worker said, maybe when I need a smile from Christopher I can just come down and go to my paper towel dispenser. I’ll take a paper towel out and wipe my eyes, tears still appear in them very frequently. Maybe this is what keeps me at my job, my paper towel dispenser to remind me Christopher is close by.

We’re still going through many “firsts” without Christopher. Even going into certain buildings. I went to the doctors this week and Joe went with me. The doctor’s office I attend is in a big building, the same as his pediatrician’s. When we were walking out of the building I had a flashback to the day we were given Christopher’s diagnosis, and the three of us left the building. We were stunned and saddened, and ready to fight for his life. It was 11 months ago when we were last in that building….

Saturday September 11, 2004  September 11….

Three month anniversary of Christopher passing away

“3”

Three months ago:

-Christopher died in my arms, and our world changed forever…..

Three years ago:

-Terrorists crashed planes into buildings, and the world changed forever…..

I believe their are a lot of angels today working overtime in heaven. There is much comforting in the world that needs to be done.

Joe and I get through the day and that’s about it. I have a nice balance between graduate school and work. Joe stays busy with his work.  Christopher comes to visit us in our dreams, and for that we are eternally grateful. Such a sweet boy, always looking out for us. Nick (the dog) helps us to get up and get  the day going. How ironic Christopher’s three month angel anniversary corresponds with three months since September 11, 2001. It made me stop to realize all the pain in the world. Sometimes we feel we are the only ones, but their are other people out there suffering over the lost of a loved one. Life continues, never the same. It’s changed forever and the world is seen in a different way.

Monday September 6, 2004 Labor Day

I found this poem in the newspaper today:

God looked around His garden

and saw an empty place.

He then looked down upon the Earth

and saw your tired face.

He put His arms around you

and lifted you to rest.
God’s garden must be beautiful,

He always takes the best.

He knew that you were suffering

He knew you were in pain

He knew that you would never

get well on earth again.

He saw the road was getting rough

and the hills hard to climb.

So He closed your weary eyelids,

and whispered, “Peace Be Thine.”

It broke our hearts to lose you,

but you did not go alone,

For part of us went with you,

The day God called you Home.

 

Here it is the beginning of September. In Virginia school starts tomorrow, it always starts the day after Labor Day. I read an interesting article in a Compassionate Friends newsletter. It talks about how this time every year thousands of parents cheer “Yippee” I’m free from the kids again! Time for them to go back to school!” However, every year at this time, I will always remember that one day in the future I should be putting together a little Snoopy backpack and a little lunch box. Four years from now I should be holding a little hand to put on a school bus. But I won’t. I would love to cheer, “Yippee, I have my Christopher home with me!!!!”

 

Sunday September 5, 2004

 

Recently a few tragedies have befallen a few different sets of friends we have. Joe and I were given so much kindness and love at Hopkins, we never knew how we would pay it back. We are just trying to “pay it forward” and help others like we were helped. It’s so hard to believe, so many of us had hopes and dreams just a few months ago, and now sadness and worry have fallen on so many people we love and care about. Both sets of friends loved Christopher so much, I think that’s what makes things even harder right now. Our wish was no one would ever have to feel the pain we felt.

 

We wake up everyday and we are still stuck in our nightmare. I think we are just now realizing we just have to incorporate the pain into our everyday lives and how we do that and live.

Sunday August 29, 2004

I started this website last October, I have never gone 2 weeks in between updates. I’m sorry, and want to thank everyone who sent cards and phone calls asking if we were OK. It was due to my computer being broken for a week (Joe was out of town and I didn’t know how to fix it) and I simply didn’t know what to say. We just miss Christopher. Our hearts ache and the pain is stabbing. Somehow we have learned to live with the minute by minute pain and incorporate it into our daily lives.

We are still getting past “Anniversaries”, Friday was my birthday, and it wasn’t a joyous occasion, just another day to get though, with the pain deeper than usual (but many thanks to my awesome friends and family who helped me get through this weekend). I couldn’t help thinking about where we were last year and what we were doing.

We still get signs from Christopher and I had the most amazing sign come to me in the mail on my Birthday. It was Thursday night around midnight and I was opening the mail and received a package from London, England. I pulled out a personalized picture and a letter written from  the singer Phil Collins! He personally hand wrote us a letter and signed a picture. At Christopher’s funeral we played the song he wrote called “You’ll be in my heart.” Phil was thanking us for including his song at Christopher’s funeral. We are so amazed and overwhelmed, basically speechless. Whoever our secret angel is out there who contacted him, thank you so much!!!!!!!!!!!!!! You will never know how much it touches our heart. It literally changed our life and gave us hope on an extremely difficult day.

I went on the internet and found the video for “You’ll be in My Heart”. There was a lady and a child running in the video. At the end you see the two hands touch with a golden light glowing. The words to this song are so beautiful, I always imagined me singing the song to Christopher. When I got the letter and listened to the song again, the words took on new meaning. Perhaps, as one of Christopher’s “aunties” told me it is time to let him take care of me. I prayed all week that his “Auntie” (you know who you are) said it was OK for him to help me, and to please come to me. Angels have such a greater understanding than I ever could. I need my angel now, just for a little while everyday to help me make it through. Christopher sure did give me a sign, I continue to be so proud and honored by him.

Our friends presented us last weekend with a beautiful watercolor picture of Christopher that is now hanging on our wall. Our wonderful angel friend Christie painted it, and it is so lifelike, it takes our breath away. It’s a beautiful treasure that will stay in our family forever. Sometimes we just stare at it.

It’s sign’s like this that get us through the day. Butterflies still appear everywhere, or “Christopher” songs on the radio and for a brief moment we hold onto our sign from Christopher and feel him near us. If you open your eyes to the signs around you, I believe you will find your loved one.

We talk to many people who have lost children. They help us so much, and remind us we can go on, life is changed forever, but somehow you can get through it. The pain is with you forever, it’s just learning to incorporate it into your daily. I think the pain goes where the piece of your heart was that died when the child (or loved one) died.  The pain fills up that missing piece, and you just learn to live with the pain  because it is always apart of you (just like the loved one is always apart of you).

Christopher still has people taking care of us. Such a sweet angel that has put the blessing of so many people in our lives.

Grieving and living is hard. It’s literally a hellish nightmare you try to get through, that never feels like it ends. But, we wake up, we fill the day, and we go to bed. We tell Christopher we love him and pray he hears.

Wednesday August 11, 2004 Angel day +61

Two month angel anniversary, Christopher passed away two months ago today.

“2”

Two months ago today our precious baby became an angel.

Sometimes it seems like two minutes ago, sometimes it seems like an eternity

Two years ago in August I found out I was pregnant with Christopher.

Angel days are so hard, the pain of Christopher’s death is still so fresh and raw, and on his angel day it is even deeper and more suffocating.   Some days we feel we are in a nightmare we can’t step out of. We just keep going around and around unable to escape.

Looking back on Christopher and his personality, we believe he knew he wouldn’t live long. He always seemed so “wise”, he always appeared different from the other babies. I read a story about how a baby kept looking in the distance when he sat in his Mama’s arms, because he knew he wouldn’t be there long and was looking for God to lead him back home. Christopher always seemed to be looking for something and smiling.

With his beautiful personality he brought people to love and support us when he returned to heaven. Christopher gave us godchildren to love, cuddle and spoil when he couldn’t be here. We love our godbabies and are so honored to be apart of their lives!

We want to thank all the people who remembered this was his angel day and sent their kind words of support and love. My co-workers who take me aside and let me cry on their shoulder or give me a hug when I need it. All the other Hurler’s families who give us strength and have become our rock. Our Hopkins family, the nurses, doctors and friends who we still keep in touch with. Thank you Dr. Kahler for your continual support and always knowing when we need you, we sure did need you today more than ever. Your phone call was a blessing. You always help remind us of his fighting spirit. Being in Baltimore for so long we made this whole other “family” who helped us in our daily battle for Christopher’s life. When he died we were yanked from our Hopkins family and miss them. It seems so surreal.

I want to thank Ms. Denise and Mama for keeping Christopher’s candle lit and shining today. Thank you to everybody in the world who has helped support us.

We went to the cemetery today to see Christopher. We probably only go about 3 times a week now. Two years ago when I found out Christopher was on the way,  I never in my wildest dreams thought I would spend my days living in a hospital for six months or as a parent in a cemetery visiting my baby. Cemeteries use to always seem spooky and scary. (Probably too many scary movies). Now I see them as the most peaceful place on earth. I never thought I would ever  think that.

It has been raining A LOT lately. I couldn’t figure out if it was God’s tears or Christopher playing in the sprinkler. Joe said he thinks Christopher has just been playing in the sprinkler’s in heaven  lately and that is why it has been raining. Another Hurler’s child lost her battle, perhaps the kids were welcoming her home.

As we sat at his grave and told him we love him and miss him, the rain stopped and the sun came out. Walking back to the car there was a yellow butterfly with black on it. It was sitting on the grass waiting for us to walk by. It took me off guard and I yelled Joe’s name. It sat there, waited for me to walk up to it, and flew away into the sunset. Thank you Christopher, we love you so much…….

Sunday August 8, 2004 Angel day +58

We eat, we sleep, we go to work. We are lucky enough to have friends who help us get out of the house and make sure we have things to fill the day. As I talked about a few entries before, that’s what things are these days (especially work) just a filler. It’s nice to be with friends, I went home this weekend and saw sorority sisters, and my best friend from New Jersey was here today. There’s just a certain amount of peace when I am with them. Joe and I are blessed by having people who are trying to help us through our pain. We want to thank the UNOS family, for your love and support in remembering Christopher.

The pain is some days/hours/minutes deeper than others. Certain things trigger it, especially when it’s unexpected. I was at work the other day and there is a chair by the phone. I suddenly remembered sitting there last year when Joe called me to tell me we had a donor and could go to transplant. I cried tears of joy. I hear a song on the radio and will have to leave from where I am at, or will see something that reminds me of Christopher and get sick.

It’s Sunday night and I look at all the things we have planned this week. Work, meetings,  getting ready for graduate school, stuff the “living do”. Sometimes I dread the week, once again getting through the week without Christopher there. I also dread the 11th, Wednesday. It’s the day he became an angel. It will be two months on Wednesday. I can’t believe it.

We miss him so much. Sometimes there is just nothing else to say. We just ache for him. One of the biggest fears for parents who have lost a child is they will be forgotten. We hope Christopher will never be forgotten, and want to always honor his memory.

Wednesday August 4, 2004 Angel day +54

Announcing the first ever:

Angel Blood Drive!

Blood Drive in Honor of Angels

Christopher & Andrew (Fimbel)

 

Sunday September 26, 2004

8 am -12:30 at Centreville United Methodist Church

Blood Donor service being provided by Inova Blood Donor services, with the new Blood Mobile!

How to sign up?

Time slots are in 15 minute intervals (ex: 8:15, 8:30 etc….) and the whole process takes about an hour

Sign up in church Narthex or e-mail Paige at hokiern@m3tc.com to book a time slot

Why?

Please give blood and help save a life, their is a critical shortage

Christopher used at least 60 units of blood products during his illness (perhaps more)

 

Angels

 

The blood drive is to honor Angel Christopher, who passed away at 13 months, and Angel Andrew Fimbel (www.andrewstoybox.com) who passed away at 5 months. Both boys passed away from rare genetic diseases after fighting for their lives. Please help us honor them by giving blood, the gift of life.

 

 

Friday July 30, 2004 Angel day +49

Work is harder than we thought it would be going back.  Like I’ve said before our coworkers are awesome, but we feel work is just a “filler”.  Our world/heart is so different now, it’s so empty and is only filled up by pain. We just try to get through the day.  I work in a large hospital, and because of doing shift work I don’t get to see the same people all the time. I had two people come up to me this week, and ask me how the baby was. I swallowed, took a deep breath, and said he died. I than pulled out my pictures of Christopher I carry with me, and show him off. I tell people how proud I am of him and how much I love him. I always talk about him in present tense, not past tense. He is still my son, he just lives in heaven now.

Christopher is never off our mind. We think about him all the time. I think one of the hardest things was seeing him so sick for so long. 6 months is a long time to watch someone you love suffer. When I’m in my car driving around, it hits me how long we were in the hospital for. It was a very long time, and so weird “living in a hospital” became normal for us. I watched video tape of him before he went into the hospital today. I forgot he laughed.

We are still working on so many things in his honor, may he never be forgotten.

Coming soon: Information about the First “Angels Blood Drive” to be held in September at Centreville United Methodist Church. A blood drive in honor of angels Christopher and Andrew (Fimbel).

Thursday July 29, 2004 Angel day +48

Sometimes our hearts hurt so much there is no way to describe the pain. A friend sent me this poem tonight. I feel it accurately describes our week, and the exact emotions of how we feel:

AND GOD SAID

I said, “God, I hurt.”
And God said, “I know.”

I said, “God, I cry a lot.”
And God said, “That is why I gave you tears.”

I said “God, I am so depressed.”
And God said, “That is why I gave you Sunshine.”

I said, “God, life is so hard.”
And God said, “That is why I gave you loved ones.”

I said, “God, my loved one died.”
And God said, “So did mine.”

I said, “God, it is such a loss.”
And God said, “I saw mine nailed to a cross.”

I said, “God, but your loved one lives.”
And God said, “So does yours.”

I said, “God, where are they now?”
And God said, “Mine is on My right and yours will be in the Light.”

I said, “God, it hurts.”
And God said, “I know.”

-August Issue of Compassionate Friends, Thank you Karen!
Sunday July 25, 2004 continued…..

My Cheated Heart

I’m a little upset today, I may be tomorrow also. Joe and I feel so cheated. We feel cheated we will never get to see our beautiful baby grow up. What a gift to watch a child grow and become a man, a dad, and a granddad. Children are such a treasure, every little move they make is amazing.

We feel Christopher was cheated. He had to spend half his life in a hospital, in a metal crib and not in his snoopy bed in his warm home with his mama and daddy. We see children at all different stages of life, and wish we could have been given the gift of watching him grow.  We try very hard not to get upset and think of what we are missing with his life. However, that’s impossible to do. This disease cheated him and us.

Sunday July 25, 2004 Angel day +44

Christopher would have been 15 months old yesterday. Every day in the month seems to have meaning. He’s still on our heart every second, as he will be forever and ever. This week I was really hit with extreme “waves” some hours were fine, others I felt that stabbing feeling almost as fresh as the day he died.

People think since we are back to work we’re doing fine, and the wounds are beginning to scab. This could be nothing farther than the truth. Perhaps in a few months/years we won’t see work as a “filler”. It just fills up about 10 hours in the day. Forces us to get up and get out of the house.

We are SO blessed to work with wonderful co-workers who understand and are considerate of Christopher’s passing. I get many hugs throughout the day, often when I am trying to put on a brave face but really dying inside. The time going to and from work is my time. I listen to certain songs and cry, other times I just think. I say prayers to Christopher all day long.

I have always tried to help others in difficult situations by comparing a person’s heart to a beautiful piece of crystal. Throughout a person’s life a person’s heart becomes banged, dented, and scratched (like a fine piece of crystal will) by the event’s one goes through. When the light hits the crystal, it causes a beautiful refraction from the grooves and jagged edges. The person (crystal) shines brighter and more beautiful than ever before. I try to think of Joe’s heart, my heart, and the hearts of all those out there who have lost a loved one shining. What I see is a hole in the crystal where the light gets lost. Perhaps, one day, the light will make it’s way through the hole.

We go to see Christopher about 3-4 times a week now versus everyday. We don’t ask why this happened, we will never find the answer. We just wish he didn’t have the disease, we miss him, and love him so much.

Wednesday July 21, 2004 Angel day +40

“Perhaps there are no stars in the sky, but rather openings where our loved ones shine down to let us know they are happy.”
–Eskimo legend

 

 

Tuesday July 20, 2004 Angel day +39

Sorry the updates are getting farther apart. Some days I just find it harder to write than others. We are still going through the “waves of grief”. It’s like being back in the hospital, just living hour by hour to see if we get through. We went into a store on Saturday, the last time we had been in there was when Christopher was alive. It just hit me and I went outside and started vomiting-just a big wave I guess. Work is good, I love holding people’s hands and it’s good to do that again. I miss holding Christopher’s hands.

I was going to grab a hospital gown yesterday and opened the drawer where we keep all of our baby/pediatric gowns. I didn’t even realize what I was doing, but I let out a small scream, than quickly covered my mouth. Christopher grew up wearing every shade and size of gown there was.

I accomplished a huge task tonight. I cooked for the first time a dinner for Joe and I since Christmas, 7 months ago. I loved to cook, and would cook often before Christopher got sick. It was nothing to have impromptu  dinners and cookouts with friends on the weekends. It was a way of life. When we were living at Hopkins we ate whatever we could find or was cooked at the Children’s House. Since Christopher’s death we have been eating meals people have been bringing us (and are still bringing us). If somebody didn’t bring food-we wouldn’t eat. Food  represented life, and we didn’t have any interest in that. After going to the doctor yesterday and realizing how beat up my body physically is, I decided I have to “try” to do something normal. Both of us have taken a huge hit physically and must somehow pull ourselves back up.

The “four” of us would always eat together, our  house rules (person number 4 is Nick the dog sitting at our feet waiting for crumbs).  Christopher’s bouncy chair would be on the table and we would eat with one hand, and bounce with the other. Tonight it was the three of us, no bouncy chair to bounce. Nick got Chinese Noodles crumbs.

Joe and I always remarked how Christopher looked like a “little man”. We are actually getting it put on his headstone. He always seemed so inquisitive and grown up. Everything fascinated him, and he seemed to always be knowing what was going on and what he was doing. He never had that wide eyed  innocent baby look. He just knew things somehow. I think with his inner beauty he brought us a world to take care of us when he was gone. I had the wonderful honor of meeting Mighty Max’s Aunt Dana (Max is another Hurler’s angel). I met Dana and her beautiful girls yesterday. I told my friends I was going to meet one of my transplant angels yesterday. How blessed I am to meet Max’s family. I know the boy’s are playing together in heaven.

I also received a very special necklace today from friends from college we hadn’t seen in years. A beautiful cross with a butterfly in the middle they had made in honor of Christopher. I just feel so overwhelmed. People have given me such beautiful reminders of Christopher. My sorority sisters gave me a mother of pearl butterfly necklace, another friend had a bracelet with Christopher’s initials hand made, my best friend had an angel with his birthstone put on it (which happens to be diamond- yeah),  a Coach butterfly, and so on and so on.  I told Christopher this morning I just needed a little sign from him today. Just a little one, I want him to spend his day playing. I than went to the post office and received my beautiful necklace. How truly blessed we are that people are helping to keep his memory alive and understand how important it is for us. I love to wear “symbolic things” it helps me to feel Christopher is with me all day long and I find myself unconsciously holding the beautiful memento I’m wearing throughout the day.

I want to thank everyone who has e-mailed me and told me they gave blood!!!! Thank you, it truly is a gift of live. I work on trauma patients who can take 10 or more units of blood during one surgery (I’ve heard of up to 70 units being used in a liver transplant before). Christopher used SOOO much blood when we was sick. Joe and I felt strongly about trying to get people to donate.

Thank you to all the wonderful people helping keep Christopher’s memory alive! Your cards, your special treasures, your e-mails, Christopher’s dedication on Friday. It leaves me speechless. I think all parents fear their children will be forgotten when they die. We have been given the reassurance by all these wonderful acts Christopher will NEVER be forgotten.

and:

Thank you my darling Christopher for putting all these people in our lives. Friends, Strangers, everybody to take care of us. We miss you so much, our hearts are broken forever. We feel your presence surrounding us all day by everything you have put in our lives. Once again, I’m honored to be your Mama.

Friday July 16, 2004 Angel day +35

Long Week, getting back to the world….

Crazy week…..

I’ve been trying to get my graduate school application together for the fall but it’s turned into a mess. (Crazy boring story). I started back to work-it was weird. I love my job, I love the people I work with, the Hospital is home to me. However, on my way into work I really thought I was going to vomit. It’s like I was going back to an old world, yet it was new again. I was so nervous – I don’t know why. Probably just settling into a different reality. No Christopher to drop off and pick up from school. No calls from daycare or worrying how he is doing. No Christopher at all. I have to readjust to my “old, new world”.

My co-workers are awesome and welcomed me with open arms. Some people were hesitant to talk to me or aproach the subject, so I would talk to them about Christopher, show them pictures, tell them how proud I of was of him. This seemed to break the ice, I think sometimes you have to give others “permission” to talk about Christopher or any loved one who is deceased. People don’t know what to say, are scared to over step boundaries, or hurt feelings. This is OK,  if I was in the other person’s shoes I wouldn’t have known what to say before now. It was good being around my work family and taking care of people again.

After much thinking and planning, I turned in the final design work for the headstone and bench for his grave. It will take a few months to come in, but it will be beautiful. We still go to see his grave all the time. We take fresh flowers, toys, and tell him we love him.

My heart just aches every second, of every second no matter where I am. I physically ache for him, my joints, my bones, everything. We are still getting meals and words of comfort from people. It helps so much because Joe and I still walk around in a crazy, dazed, world.

The week ended tonight with the best gift ever. Christopher went to Fair Oaks Hospital DayCare and they were having their 10 year anniversary picnic. It was dedicated to Christopher. The staff planted a beautiful blooming cherry tree in his honor. What a privilege it will be to watch the tree grow and bloom over the years. The staff took pictures and it was a wonderful picnic.  I saw friends I hadn’t seen in a long time, and it was nice to reconnect.

There are still pictures of Christopher in the infant room and they warm my heart, yet make me sad. He should be there doing baby stuff playing with his friends and teachers. Maybe he is doing this in heaven. He was so happy at Fair Oaks, they are truly a blessing in our lives.. I can’t wait to see the beautiful tree bloom and know he will always be apart of such a wonderful loving place forever.

Simply stated, we just miss him and love him.

Sunday July 11, 2004 Angel day +30,

1 month ago today you became an angel 

1 month ago today you became an angel. We can’t believe it. We miss you so much Christopher. Our hearts are with you in heaven. Today was a difficult day since it marks the first one month anniversary of your passing.

We miss:

The way you folded your little hands together. You looked like a little old man praying, you always held your knuckles together.

-The way you sleep:

You always slept with one hand holding your hair. When you were intubated I would untie your restraint so you could grab hold of a wisp of hair with your right hand.

 

OR

 

The way you slept like a “baby burglar”. You would sleep with your arms straight up in the air like you were saying “I give up, I give up.”

 

Your crazy hair

-The way you kicked your legs in the tub

-Your face, your hands, your toes

-Your smile

 

-YOU!

 

We are honored:

-You are our son

-God gave you to us

-To see your strength. I would be so proud of you when you would try to extubate yourself.

-You lived your life with so much grace and dignity. You returned to heaven the same way. You passed away in our arms. Your funeral was beautiful and attended by a couple hundred people. Friends came we hadn’t seen since college. There was a special police escort and salute at the cemetery (we are still not sure who the angel was who gave us this gift).

 

We are thankful:

-You brought so many wonderful people into our lives to take care of us when you had to go back to heaven

-You visit us in dreams

-You give us signs

-We get to see you one day in heaven

 

We love you more than life itself, you are in our heart every second, our beautiful little baby butterfly.

Friday July 9, 2004 Angel day +28

Many people have been asking what they can do for us now that Christopher has become an angel… We ask for your help to assist other parents and children with sick children. To learn about Christopher’s Caterpillars click on Snoopy or go directly to How you can Help

 

On Eagle’s Wings

Dedicated to my High School French teacher who has helped me through this journey!

After Christopher passed away Joe and I were trying to decide on songs for the funeral. A very wise teacher from my past, starting sending me e-mails of encouragement to help with the difficult days ahead. She sent me the song “On Eagle’s Wings.” It is a hymn I grew up singing in church, and is very beautiful. We decided not to use the song for the funeral, however for the past few days the song has been stuck in my head. I have found myself humming the melody over and over. No reason why, I’ve just been humming along.

Joe and I were at the cemetery yesterday (Thursday) making headstone decisions, trying to decide on the perfect headstone for Christopher. We went to visit our little man (nickname) and a huge butterfly knocked me in the head. It was black and just soared right into me. “Hello Christopher” we shouted! Joe and I were cleaning off his grave and grieving our little boy like we do every second of the day. Joe gasped and said “Look!” Standing about 100 feet from Christopher’s grave was an Eagle! It was beautiful and we walked over to it. The eagle stood there and let us admire it. The eagle than went up into a tree as we continued to stare at it’s beauty. It flew over Christopher’s grave and into the tree overlooking his plot. We were speechless.

For those of you who don’t know us, we live in a huge metropolitan area, only 20 minutes outside of Washington, DC. We are the 2nd worst area in the country for traffic and congestion. To find an eagle where we live would be impossible. There are no forests, no trees, no where an eagle would come from. Perhaps another sign from my little stinky? (yet another nickname). We gave him a kiss goodbye and headed back to the car, a yellow butterfly played at feet all the way back to the car. I figured since Christopher had blond hair, that’s why it was yellow. We had also tied butterfly balloons on his grave almost two weeks ago. The pink balloon is still there blowing in the breeze, and the other balloon has been gone for a while. I figured since pink represents girls, that’s why it is still around.

Thank you Christopher for my signs today! I prayed Thursday morning, told him I loved him and I would open my heart up for signs he was OK. I needthat from him. I am trying not to dwell on things that would keep my heart closed, but let it open up so I can still feel Christopher and his presence around me.

Thursday July 8, 2004 Angel day +27

Please see our new page “Carnival by the Sea” where I describe the transplant experience and what life feels life afterward. You can click on Woodstock’s Ferris wheel or the index on the side.

 

 

 

 

Wednesday July 7, 2004 Angel day +26

Sticking a toe back in the sea of life

I use this phrase for many reasons which will be explained. Yesterday Joe and I both stuck a toe back into the “sea”, which is a new world to us. Joe went back to his first day of work, he hadn’t been in his office for 6 weeks, and only part time before that. I went to my work to sign up for shifts, put new pictures of Christopher on my locker, and check my mailbox. It was comforting for both of us being in such a familiar place with co-workers that felt like family. However, it was confusing for both of us to only be able to look at the pictures of Christopher we have up, and know we won’t end our day by going home to him.

I went to Fair Oaks Hospital Daycare Center after that to pick up his belongings and get the rest of his belongings from his crib and cubby. We just always knew he’d be coming back, so his pictures and crib were there waiting for him. It was time to pick them up. I loved his school! I love his teachers, they brought so much happiness to him and to us. I felt so lucky to have him there. I hope to always keep in touch with the school, one day they will be taking care of one of his brothers or sisters (no, I’m not pregnant). They made him happy and loved him so much, they all hold a deep place in my heart for loving my special boy.

We were going through his belongings last night and the “wave” of grief from the sea of life overwhelmed us again and I felt I was suffocating. That is the best way to describe a situation like this, a sea with low waves and high waves coming in. Going through his belongings was so sad. We miss him so much.

I loved looking at his weekly “goals and objectives”. Such wonderful things as touch a pumpkin and fall leaves, listen to Italian music, practice laying on tummy and looking in a mirror. So simple, so beautiful.

There was a picture of Christopher we found that made us laugh. As I have stated many times, he loved women and was a little Prince Charming.  At the ripe age of four months we found a picture of him laying in one of his teacher’s arms and smiling the biggest smile we had ever seen. He was gazing into his teacher’s eyes!

There were many times in the hospital I often envisioned ourselves at a carnival by a beach. I know this probably sounds crazy, but the whole time of being in the hospital was like being in a huge carnival, with up and down roller coasters, clowns (there really were clowns in the hospital) and the tilt-a-whirl (of emotions). Perhaps tomorrow I will elaborate on the “carnival journey by the sea.”- a journey of a terminal illness.

We are at angel day +25, the one month anniversary of his passing is on the 11th, Sunday. I can’t believe he has been gone so long. I’ve been reading books on people passing and their souls after they die. I am beginning to have a greater understanding of where Christopher is now. His body was the cocoon, that wouldn’t allow him to live. He became a beautiful butterfly to break free and live.

Sunday July 4, 2004 Angel day +23

4th of JULY

Last year at this time we found out Christopher had hearing problems. We knew he had partial deafness in both ears. I remember we went to a friends house, than skipped going to any fireworks display. I was scared the high pitch sounds of the fireworks would damage his fragile hearing.

When we woke up today it was raining, and rained throughout most of the day. People often said when it rains it  is God’s tears. Well, I changed my mind about that day. I think when it rains it is Christopher playing in a water sprinkler out in the beautiful meadows of heaven. He and all the other children run and play in the sprinkler and laugh. He never ran or even walked. In my dreams I see him running with little Elmo swim trunks, surrounded by his friends in heaven. When I woke and saw the rain I said to Christopher, “Have fun playing in the sprinkler Christopher.”

Friday July 2, 2004 Angel day +21, Angel for 3 weeks today

A funny thing happens when you loose a child – Life continues to go on around you, without your child in it. Joe and I have had a bad week. Everything triggers something. There are little boys everywhere, songs on the radio, or television shows that remind us of Christopher.

We look at videotape of Christopher, some of it makes us smile, some of it makes our heart ache for what was lost. However, I will never be able to say it enough, I am so proud he is my son. For such a little boy he showed he so much of the world. What a huge burden a little baby carried. He still reveals the world to us everyday, on a higher and deeper level than I could ever had imagined.

I am no longer scared of the world,  what is left to fear?  Joe nor I are scared of passing away one day when it is our time. Sometimes life seems so short, we blink our eyes and years have gone by. I think death, and what happens after death, is a fear many people harbor secretly inside.  I know I had this fear, and I still wonder what has happened to Christopher, what he is doing in heaven. However, one day not only will be able to go to heaven, but we will have the best gift of all waiting for us at the gates-Christopher.

We are trying to “go through the motions” of life. Joe starts back to work next week, and I’ll probably go back the week after that. I’m also signing up to take more graduate classes in the fall. Like I said in his eulogy “we are just shells, are hearts are with you in heaven.”

We are sad, we just miss him and our hearts hurt.

Wednesday June 30, 2004 Angel day +19

We ache to hold Christopher. We wish for one second we could hold him again. Every second of our lives echo Christopher.

This poem has been given to me many times since Christopher died. I thought I should post it:

God’s Loan“I’ll loan you for a little time
a child of mine,” He said,
“For you to love the while he lives,
and mourn for when he’s dead,It may be six or seven years,
or twenty-six or seven,
But you will, till I call him back,
take care of him for Me?He’ll bring his charms to gladden you,
and should his stay be brief,
You’ll have his lovely memories
as solace for your grief.I cannot promise he will stay,
since all from earth return,
But there are lessons taught down there
I’ll want this child to learn.I’ve looked this wide world over
in my search for teachers true,
And from the throng that crowd life’s lanes,
I have selected you.

Now, will you give him all your love,
nor think the labor vain,
Nor hate Me when I come to call
to take him back again?

I fancied that I heard you say,”
Dear Lord, Thy will be done,
For all the joy Thy child shall bring,
the risk of grief we’ll run.

We’ll shelter him with tenderness,
we’ll love him while we may,
And for the happiness we’ve known,
forever grateful stay.

But should the angels call for him
much sooner than we planned,
We’ll brave the bitter grief that comes
and try to understand
.

~Author Unknown~

 

Tuesday June 29, 2004 Angel day +18

We miss Christopher. Sometimes there is nothing else to sayWe just miss him.

We have talked with or e-mailed  a lot of other families who have lost children in the past few weeks. Your strength and outlook on life helps us through this very difficult time. Thank you – you strengthen us and you are helping to reshape our lives. After meeting with some special friends tonight, we went out and rented the movie “Pay It Forward”. We hope we can “pay it forward” one day and help out others as you have helped us!

We still visit his grave everyday. We put up butterfly balloons yesterday. We also decorated the flower stands with red, white and blue flowers with 2  little flags for 4th of July.

I bought shelves and picture frames and made a Christopher wall in my living room. We put all our favorite pictures on the wall. I also created a shadow box that sits on the shelf. In it I placed his pacifier, a  butterfly from Mary Kate, a cross from Becca,  a tiny pair of wooden shoes given to us to represent his “trip to Holland” and the butterfly boxes from the funeral. Next to the box I sat angels people have given me since he died, and a beautiful crystal butterfly Brian and Jameela gave us. I love looking at the wall, it gives me a certain peace. I see Christopher’s beautiful picture along with special treasures given to him by some of the people we care about most.

Our friends are still being incredible. I have received a beautiful necklace my best friend and her mom had made for me with a beautiful diamond (Christopher’s birthstone), and another close friend had a bracelet made for me with his initials. I will wear these everyday and feel Christopher is right there with me, along with the beautiful people who designed the jewelry and gave it to me with love. We still have people bringing us meals, calling us, taking us to dinner and teaching us how to live again. In many ways we must relearn life, with Christopher living in our heart, and not in our physical presence. We are blessed to have such a wonderful support system.

We have received e-mails and cards from all over the world – thank you. You have no idea how much it has meant. We are overwhelmed at the circle of love that has been shown to us.

.Saturday June 26, 2004 Angel day +15

We sleep, we take Nick (dog) for walks and we go through the motions of life. We don’t have much of an appetite, so we eat every now and than. I miss him and cry when I look at his precious pictures. We received a letter from the Virginia Tech Alumni Association, expressing their condolences on behalf of the university. This was so amazing and blew us away. We don’t know how they found out, but this will always be a cherished letter for us. Our entire family are Virginia Tech Alumni, so naturally we thought Christopher would go there and play football.  We could tell he already had a “linebacker build”, and he looked so cute in his football jersey! See “Photo Gallery” for a picture of him in his jersey. He had stuffed Hokie Birds (the mascot) as some of his first toys. His “Auntie” Angie and “Uncle” Bubba had given him his favorite book, “Hello Hokie Bird”. A children’s story about the Hokie Bird walking the grounds of Virginia Tech to get to the big game.

We visit Christopher’s grave every day. I always clean it up and make it look nice and pretty, I always bring fresh flowers. Sometimes “Christopher the butterfly” will come and play. He came today, a beautiful black butterfly with yellow and red. He sat on the grass and let me come up to him. I told him I loved him and missed him. I told him I was so sorry he had this disease. We “talked” for a while, and than the butterfly flew to Joe and was gone. Perhaps it was time for him to play…..

We took Nick  today to visit Christopher and after he was done sniffing and rolling in the grass he layed by Joe and I. We always take a quilt and throw it down next to the grave. The three of us were laying on the quilt, and for a second it felt like Christopher was in my arms again and we were all laying there looking up at the beautiful sky.

Hokie the cat has turned yellow from eating the flowers. Her right paw and her front are yellow, she is enjoying the house that has become a florist very much. However, time is passing and the flowers are starting to die. Despite this, the grass over Christopher’s grave is starting to grow green and tall. It strikes me as unusual and quick how after a week grass is  beginning to grow. The flowers in the house are dying, and the grass is growing. And life begins anew….. I hope Christopher has begun a new life.

Our friends have been taking care of us by providing us meals, company, phone calls, and forcing us to leave our house and join the outside world again. For this we are so grateful. Christopher would want it this way, he loved life. Every minute we still grieve Christopher, he is our heartbeat. We miss him so much. I have more books on children and dying and have been trying to read them. They give me some sense he is OK. I have such a long journey to find peace that he really truly is OK.

Neither one of us are working right now. We feel caught in a surreal dream and keep trying to pull ourselves out of this dream and back into what world we are suppose to be in. We can’t concentrate and we are still wrapping things up from the funeral. I guess we are figuring out how to live again. We were so use to being at the hospital for so long, and going to doctors and hospitals, and having Christopher, it’s weird getting use to the quiet.

This poem was sent to me today and posted in my guestbook, I wanted to make sure everyone read it. We did a butterfly release at Christopher’s graveside burial.

Butterfly Memorial- Release of Butterflies .

“A butterfly lights beside us like a sunbeam. And for a brief moment its
glory and beauty belongs to the world. But then it flies once again, and
though we wish it could have stayed, we feel so lucky to have seen it.”

As you release this butterfly in honor of me,
Know that I’m with you and will always be.
Hold a hand, say a prayer,
Close your eyes and see me there.
Although you may feel a bit torn apart,
Please know that I’ll forever be in your heart.
Now fly away butterfly as high as you can go,
I’m right there with you more than you know.

Where I have gone I am not so small.
My soul is as wide as the world is tall.
I have gone to answer The call, the call
Of the one who takes care of us all.
Whenever you look, You will find me there-
In the heart of a rose, In the heart of a prayer.
On butterflies’ wings, On wings of my own,
To you, I’m gone
But I’m never alone-
I’m over the moon.

I … Am…. HOME !!!

To all our wonderful friends who have called and sent e-mails, please forgive  us for not responding yet, we are so appreciative of your support and we are trying to dig our way through everything!
Wednesday June 23, 2004 Angel day +12

Tomorrow will be: One week from when we buried Christopher, and when he would have been 14 months old.

We sleep, we exist. Joe took Nick in for a tune up today and painted our bedroom. Today was the first time I have driven my Jeep in weeks. It had the car seat in it, and we had been avoiding driving the Jeep, I’m not ready to take the car seat out. So I drove the car, and the car seat will stay in.

We went to the cemetery yesterday, as I still do everyday and Joe shouted, “Look, there’s Christopher.” Sure enough a beautiful butterfly came flying over to us. It sat on the ground and let me talk to it. It would zip around, fly back and I could talk talk to it some more. I liked hanging out with Christopher. I was out at the mall the other day, and saw a butterfly display in a window. One window had a black beautiful butterfly, and the next window had a pink butterfly in it. I stopped and laughed to myself. I could see him in heaven with his little green blanket dragging behind him,  running around and chasing all the other little girls. Since he never crawled or walked, I believe he is walking in heaven now.

We went to a Compassionate Friends meeting last night. It is for parents who have lost their children. It was good to talk to other parents, and find out strategies for dealing with people in the world. For example one thing the people from Compassionate Friends told us is people will say stupid stuff and you have to let it roll off your back. I had to run errands today and when I told people about Christopher I got the following comments, “Well, you just have to suck it up”, “He’s better off anyway”, and “Oh well, life goes on, just move on.”

I’m pretty numb and everything seems hazy today so I ignored the comments, and am glad I had been to the meeting last night. It prepared me to start dealing with some of the insensitivities of people in the world.  I know most people don’t know what to say, and no malice is intended, but if you don’t know what to say, just say I’m sorry.

I think I spend a large portion of my day trying to figure out where Christopher is. I know he is in heaven, but when you are a parent you worry about where your children are every second of the day. When you are at work, you worry about them at daycare, or call to check in if you have to go on a business trip and can’t see them. Because I can’t physically see him, or hear his little voice I’m having a hard time finding comfort he is OK and safe. Perhaps because I was at his bedside taking care of him for so long when he was sick, and knew everything that went on with him, I’m having a hard time getting readjusted. I think it is probably I love him with all my heart and miss him. I just want him to be free from pain and happy. I miss him.

Joe and I want to thank with all our heart our wonderful friends. You have not run from us, and are still here holding our hand as you always do. When we can not take care of ourselves you are here with a meal, or a phone call. When we came home from Hopkins, you stocked our fridge, and had flowers all over the house so we didn’t have to come home to a cold empty house. You send us gifts in the mail (thank you for the beautiful crystal butterfly “Uncle Brian” and “Aunt Jameela”), and always check on us.  Also, to all the people who have been sending cards, friends and strangers, thank you. We are overwhelmed at all the people are little boy touched. It truly blows us away.

Monday June 21, 2004 Angel day +10

And so it came and went. The first holiday without Christopher. We slept, I cried, we visited Christopher. We took Nick (the dog) to visit his little brother. He just sniffed and knocked stuff over. I cried.  Yesterday, Father’s Day,  was a hard day. I bought Joe his favorite ice cream cake, some cards from Christopher and I, and a figurine of a blond boy. Christopher would have wanted it that way. I think one of the things that is so hard to figure out after you loose a child is if you are still really that child’s mom or dad. I have been assured by many, yes, you will always be a mom or dad.

I miss Christopher so much, it’s just devastating. We only eat when friends bring us food, we just don’t want to do anything.

I bought books on grief, I think I’ll return them, they don’t seem like they will help much. We got the lost rolls of film with Christopher’s picture’s on them developed this weekend (see picture below). The pictures were all from the end of December/beginning of January. He was smiling and so happy in the pictures. In one picture there is the three of us smiling. I call it the “life was perfect for one second in time picture.” There is even a picture of him leaving to go to Hopkins to start chemotherapy. He’s tucked in his car seat, little hat pulled over his head and looking sleepy.

The beginning stages of grief are so indescribable. Every hour is up and down with emotions. It’s good to have Nick, he forces us to get up and walk every day. We need to take the dog in for a tune up this week (coat, nails, heartworm tests) which will give us something to do. We are trying to figure out how to live in the real world. Not only did we loose Christopher, but we were living in a hospital for 6 months and have to figure out how to live in the house again.

Sunday June 20, 2004 Angel day +9

Happy Father’s Day Joe!

You are always a dad. We Love You!

Christopher December 2003

(We just found this film and had this picture developed).

Friday June 18, 2004 Angel day +7

The grandparents have left, the house is quiet. Very weird….. Not only did we loose our baby, but we lived in a hospital for 6 months and have to  get readjusted to living again.

We went to see Christopher today. I cried and cried at his grave. I miss him so much. I asked him to please give me a sign to let me know he was OK. We wanted to be there at 4:00pm, the exact time he passed away last Friday. Right before 4:00 one of the butterflies from yesterday came zooming across our path. About 10 minutes later, a beautiful black butterfly came up to Joe and I and started “playing” with us. It flew right to my face than in between the flowers on his grave. It zoomed around us and would wait till we tried to pick it up, than zoom around and back to us again. This went on for about 10 minutes. I think he was telling me he was flying in the sky.

Butterflies just somehow fell in to place and became his symbol to us for the following reasons:

-I had made up a song about butterflies in the hospital

-The name of our street is called Papilion. The word Papilion translates into butterfly.

-The butterfly is the sign of the resurrection.

-We were out running errands, and the signs in the shopping mall all had butterflies on them.

-We have had many people who are mourning Christopher’s death with us, e-mail us to tell us about strange butterfly sightings. Butterflies flying in stores and landing on counters in front of them, in front of their car, the stories go on and on. However, the pain is deep and also goes on and on……..

Thursday June 17, 2004  Angel day +6

Christopher’s Memorial Service and Burial

410 Days on This Earth

Forever Eternally in Our Hearts, Goodbye Christopher

We Love You

Today Christopher was laid to rest.

His Memorial Service was beautiful. I read his eulogy, a letter I had written him, and we played “You’ll be in my Heart” by Phil Collins. There was a small ensemble of the choir that sang and played the flute, and the congregation sang many hymns. My sister read a poem  to me. I had given her a list of poems and she picked out her favorite and read a letter written from a little boy in heaven to his mama. We were also honored to have our geneticist from Johns Hopkins come and speak about Christopher and his courageous fight. The highlight of the service was our pastors sermon. They reminded us there are no answers to why, however not to give up on God or our faith because that is where Christopher is.

The church was once again decorated with butterfly and regular balloons. His coffin was baby blue and looked like a bassinet. It sat on top of his snoopy blanket he was wrapped in when he passed away.

When the service was over and the pall bearers took Christopher outside to put in the hearse, their was a police escort waiting to take us to the burial site (I guess because of the large attendance of the crowd). The police stood at “attention” as we left the church, and again as we entered the cemetery. I told Joe you would have thought we were burying a dignitary. Perhaps we were, and we just didn’t know it. Their motorcycles reminded me of one of Christopher’s favorite blankets he slept on in the hospital that had motorcycles on it. The road to the burial was filled with many butterflies.

We did a graveside burial and than released balloons and butterflies into the sky. This was the second saddest day of my life, I didn’t want to leave the casket.

We want to thank all of the wonderful  friends and family who came to stand by us. People came from near and far to stand by our side and we are eternally grateful.

Wednesday June 16, 2004 Angel day +5

Christopher’s Viewing

Joe and I received people for over three and a half hours tonight. The viewing was originally scheduled from 6-9, and we received friends till after 9:30. Christopher’s oncologist, nephrologist, and pediatrician were there. Sorority Sisters I hadn’t seen in 7 years,  and college friends from Virginia Tech came. Our work friends from past and present jobs, and friends from church attended. His school teachers from Fair Oaks Hospital Day Care Center attended, and we even met strangers who never met Christopher who came to pay their respects.

We received people in the sanctuary and filled it with Christopher’s memories. We put up his pictures, toys, fingerpaintings and Elmo’s. Flowers overflowed in the sanctuary, and even had to be put out into the Narthex.  We figured over 200 people attended and the greeting line was out the door.

We felt so honored for so many people to come and pay their respects. I grabbed people’s hands and brought them over to the casket to let them see Christopher. He looked so handsome in his tuxedo and bow tie. He only wore socks, no shoes, he never wore shoes in the hospital. I couldn’t stop rubbing his sweet head or holding his hands. I kissed him all night on his beautiful face and can’t believe I won’t be able to touch him again after tommorow.

Tuesday June 15, 2004 Angel day +4

We finalized funeral arrangements with the pastor this morning. I think the service will be beautiful and special. Joe and I went to see Christopher at the funeral home today. They had him dressed in his tuxedo, laying in his beautiful casket that looks like a bassinet. The three of us got to be together for a few hours. We held his hands, and stroked his head. I asked God to let this memory live in my heart forever. I can’t believe in a few days when the casket closes I will never be able to touch him again.

-His obituary is now in the paper

-Funeral arrangements are still the same (see Monday June 14)

On the first page of Christopher’s Website I wrote:

This is the beginning of a story about a little boy who is about to undergo the fight of his life against Hurler’s Syndrome (Mucopolysaccharidosis I)

I will never change those words, this story will never end, for a person’s spirit never dies. The focus of this website may now change and become:

This is the beginning of a story about a family loosing their precious angel after the fight of his life.

Monday June 14, 2004  Angel day +3

After hours of careful searching, we found a beautiful place to lay Christopher to rest today. We searched and searched, I even got sunburned! We decided on a beautiful spot on top of a hill, surrounded by trees and a nice breeze. He will be able to look out over Fairfax, and can even see mama’s work in the distance.

Christopher’s obituary  will be in the Washington Post Tuesday -Thursday and the Richmond Times Dispatch (Richmond, VA) Tuesday -Wednesday.

Final Arrangements:

Wednesday: Viewing at Centreville United Methodist Church 6-9 pm (Centreville, VA)

Thursday: Memorial Service  at 1 pm at Centreville United Methodist Church, and graveside burial to follow at National Memorial Park in Falls Church Va. After a graveside service we will have a butterfly and balloon release to send love up to Christopher in heaven.

Many people have inquired about directions and memorial contributions:

Memorial Contributions:

In lieu of flowers we ask for a contribution to the Christopher Migliozzi Memorial Fund at Centreville United Methodist Church. This money will be earmarked to create something special in the future. Joe and I want to either build a playground for handicapped children, or perhaps do something for the MPS society.

If You Would Like to Send Flowers:

Everly Funeral Home, 10565 Main Street, Fairfax Virginia 22030 (This is the funeral home handling our arrangements)

or

Our home or Centreville United Methodist Church

Directions to Church

From the North:

Take I-95 south to I-495 west towards Bethesda / Virginia

See Directions below

From the South:

Take I-95 north to I-495 west towards Tysons Corner

See Directions below

From I-495

From I-495 take exit 49 I-66 West

Follow for approximately 12 miles to exit 53 Route 28 south towards Manassas

Follow for about 2 miles.  Pass the movie theatre on the right and make a right onto New Braddock Road.

Church is on the left side.  Take a left at the stop light onto Centrewood Road.  Take your first left onto Old Centreville Road (No sign on road)

Centreville United Methodist Church

6400 Old Centreville Road

Centreville, VA 20121

(703) 830-2684

Sunday June 13, 2004  Angel day +2

We picked out a casket today for Christopher, the saddest experience of my life. Tomorrow we will pick out a plot to bury him in. We are looking for a children’s cemetery so he can be surrounded by other angels. We also bought him a tuxedo to bury him in. He was suppose to walk my mom down the aisle in October when my sister got married. We bought him a tuxedo, with a white shirt and black bow tie.

Preliminary funeral arrangements:

Wednesday: Viewing at Centreville United Methodist Church 6-9 pm (Centreville, VA)

Thursday: Funeral  at 1 pm at Centreville United Methodist Church, and burial to follow (location to be announced)

We have to tie up a few loose ends tomorrow, and write his obituary for the paper. His obituary will be posted Tuesday -Thursday in the Washington Post and Richmond Times Dispatch. We will post the final arrangements with dates, times, directions and where to send flowers and memorial donations tomorrow.

Christopher has given me a few signs in the past day. I always sang him a song about a caterpillar becoming a butterfly. Today Joe opened the mail and there were pictures a group of elementary school children from Florida sent. The pictures were all of butterflies. We were talking with one of our friends outside today and looked up in the sky. There were balloons flying high into the sky that disappeared into the clouds. We will be releasing balloons during the burial. Despite this, the sorrow we feel is indescribable. I keep trying to justify in my head why Christopher isn’t here but I can’t, perhaps in time I can. The loss of a child is the greatest loss, the most severe pain and the biggest question that can ever be answered. I know we will live in pain, every day for the rest of our lives until we can meet again in heaven and kiss his precious face again. I cry every minute, and sleep in his room. (I’m use to sleeping on the floor or chairs in the hospital so a bed feels weird).

I must go write his obituary now……

Saturday June 12, 2004  Angel day + 1

We got back to Virginia late last night. The pain is too intense to describe. I miss my little boy and wish he didn’t have to die. I am so proud of him, he put up a brave fight and taught me how to live. Preliminary funeral arrangements are being made for the middle of the week. I was begging the doctors until the end to try anything, even a lung transplant, but he was too sick. Joe and I realized after he passed how sick he was. One of his incisions came open and he started bleeding again, and there was blood in his stool.

We came back home after 6 months to his room. The pain and quiet of this house is too much. I don’t understand what happened. All the prayers, all the prayer chains, I knew he would make it. I’m struggling in my faith, Christopher was a miracle to us, however I always thought God would grant him the miracle of healing. We never doubted God or got mad, we just accepted and went on. We knew he would lead us down the path of healing and home again.

Here we are, trying to figure out how to plan a funeral for a 13 month old baby.

Friday June 11, 2004 Day +141

Christopher’s Angel Day

Today at 4:00 pm Christopher Joseph Migliozzi became an angel. He died with grace and dignity in his Mama’s arms, with his mama and daddy holding him tight. He was surrounded by his family, doctors and nurses who helped take care of him.

Christopher was on maximal life support, and 100% oxygen, however his oxygen saturations began quickly decreasing. His lungs somehow became extremely damaged, and his body couldn’t maintain proper oxygenation. The doctors still don’t know what happened to his lungs. We asked to have his heart and liver donated, and after the transplant consortium reviewed his records they felt they were too damaged. He was dying too quickly anyway, he would never have made it to surgery.  We decided not to have an autopsy done to determine final cause of death.

Christopher held on until his Grandparents, Aunt Lindsay, Uncle Brad and Pastor could make it. He fought until the second he passed away, giving everybody the gift of giving him a kiss good bye.

Our lives will never be the same. We held out hope until the very end. Our hearts are destroyed. We are blessed to have Christopher as our little boy, and honored to be his parents. Every breath we take is for  Christopher for now until eternity. I can’t wait until the day when we join him in heaven one day.

Thursday June 10, 2004 Day +140 12am

Up and down we go on our roller coaster….   This morning things were looking a little grim.  His blood gases were bad and he was not doing well on the Osillator ventilator.  The respitory therapists had noticed over the last week or so that when they bag Christopher during suctioning  his oxygen saturations go to 98% or higher.  The doctors thought that we should try him on the conventional vent and see how he does.  After an hour or so of craziness getting him switched over from one vent to another, his saturations and gases were much better.  He also had to be reintubated, the doctors had to put a larger size endotracheal tube in his throat.  Each big move today was “dangerous” so it was a scary morning, however he stayed relatively status quo for the day on a decent amount of oxygen support and pressures, but nothing too terribly high.

Tonight when we got back from dinner his oxygen saturations were lower and his gases not so great.  No particular reason.  So here we are again waiting to see what another day brings us.

Some good news is that his heart is doing great, they told us he had the strongest heart and blood pulses on the unit! Also, his liver numbers are back to normal. His white blood cells still remain a mystery and were 77,000 this am (normal is 6-10,000). At one point today the doctors had talked about doing a blood exchange. They would take his blood out, and put new blood in. They would do this by taking 10cc of his blood out, than putting in 10cc of new blood over and over until they replaced his entire blood volume twice. For now this idea is on hold. When I left at midnight  his white blood cells have come down to 55,000.  We are hoping for his lungs to show us any signs of improvement.  The doctors are very concerned about infection still but can’t put their finger on what it could be. We do think all those white blood cells are in the lungs attacking something which could account for his poor oxygenation. He still has no positive cultures showing any sign of bacteria, virus or fungus, and no fevers! We also got an abdominal ultrasound today to make sure there was nothing weird like a burst appendix or burst ulcer-everything clear.

Thank you Brad W. for coming to visit.  Your encouragement and optimism continues to give us hope.  Thank you Sandra for bringing a very tasty dinner and your smile and optimism.. You fed us, and another tired transplant mom. 

Thank you Dr. Kahler for joining us in prayer and anointing Christopher will oil.

Lastly, thank you to all of Northrop Grumman for your generous donation of PTO hours.  Once again you have come through for us and allow me to take time off to be with my family.  We feel truly blessed by your generosity and prayers.

Thursday June 10, 2004 Day +140 9am

Blood gas numbers aren’t great and we had to go back up on his oxygen, the doctors are thinking about putting him on another type of vent.

Wednesday June 9, 2004 Day +139

Not a very progressive day.  We more or less stayed on the same vent settings all day with no change in status.  His white blood cell count is up to 70,000 with still no sign of infection.  No cultures have grown on anything.  The doctors are somewhat stumped.  He is still swollen, and it is hard to tell if his  lungs are not improving or if they are healing. It has become very difficult to sit at his bedside and wonder what is going on in his little body.  He shows signs of Christopher once in a while when he shrugs his eyebrows. I think the doctors don’t feel positive about many things. We got another “talk” . In my heart, I still don’t think it is time yet. I still see him fighting. I asked Christopher for a sign yesterday and he moved his foot while he was under heavy sedation. His heart is still strong, his liver bounced back, and the bedsore on his head is healing very nice. I feel these are all good signs, no matter what some of his other numbers might read (his blood gas numbers are still very bad).

We are so scared.  This has been a roller coaster ride everyday and feel so helpless.  Our Geneticist and oncology fellow has been so optimistic and keeps us going.  Thank you Dr. Kahler and Dr. Williams for being our rock. Thank you nurse Katie for loving our boy so much.

Please keep the prayers coming.  This is all we know how to do.

Thank you “Aunties” Laura and Megan for coming up and reminding us of his fighting spirit.

Tuesday June 8, 2004 Day +138

Today was about the same as yesterday with a couple of new events.  We changed his bed again.  They finally got it fixed so it inflates properly.  He looks very comfortable.  His sores actually look a tiny bit better.  He is still on a lot of respitory support and required a little more than Monday.  He is still fighting some sort of infection that nobody seems to know what it is.  His white blood cell count was 60,000 which is very high.  Typically its a sign of infection.  His PD is still going very well and the Renal doctors were very happy about the progress.

We had a close call in the morning.  Christopher’s chest tube got clogged which caused his blood pressure to drop and his saturations to fall.  Once they cleared the chest tube things were much better.

Please keep praying for a miracle.  Christopher is on a lot of respitory support and his lungs are still very weak.  We can’t lose our boy.  Its not his time.  He was put on this earth to do great things….

Monday June 7, 2004 Day +137

Nothing new to report today – our basic roller coaster of a day. The doctors had to give him medicine to keep paralyzed and sedated. Christopher’s still moving around too much and disrupts the settings on the vent. His oxygen will be up, than down, up etc…. We get 50 million different opinions of his condition from 50 million doctors. We have decided not to listen to them anymore. Their are two doctors who we now run everything by, and we trust their opinions and guidance to get us through this maze. We’ve stopped asking for every lab number, x-ray result etc… It’s too much of a roller coaster. A lab will be good one hour, we get excited, than the next hour it’s down again.

Christopher’s got awful bed sores and skin breakdown. Their has been a 3 day fiasco of getting him an air mattress bed to help with his sores. He  has them on his back and a HUGE awful one on his head about 4 inches long. They first got an adult bed but he kept sinking into the middle of the bed because he doesn’t weigh much. We couldn’t find him in the bed! We finally got a pediatric crib air mattress bed, that works somewhat.

Sorry not much more too report-we’re sad and just hoping for a miracle.

Sunday June 6, 2004 Day +136

Christopher was responsive today and kicked his legs and arms some. He was also trying to “breath over” the ventilator,  and take breaths on his own. Because he was so active, his blood gas numbers were all over the place, and late tonight the doctors had to give him some sedation to get him to relax. Although he is fighting, his lungs still are not strong enough to work on their own, and we must still help them heal by keeping him a little calm. I was bummed we had to sedate him, because I haven’t seen him this responsive in a week. However, he still squeezed my finger after they gave him the sedation to say “I’m still here Mama.” So, it was basically a day of chasing blood gas numbers, and resetting dials on the vent. We were doing awesome this morning, than his numbers dropped a little by afternoon, than they went up, down…… A roller coaster.

Joe and I are tired and scared. We’ve been in the hospital 6 months, and know we have so much longer to go. I often say we “blinked” and there went a half year of our life. We can’t eat, sleep, have any peace. We’re not in our home, we don’t have our dog, and we can’t even work (OK, sorry for complaining, sometimes the stress is just incredible). We just need a miracle, Joe said maybe last week was our miracle and he made it through and is still fighting.

Thanks to Mr. Gai and Mrs. Pat, “Auntie” Christie and “Uncle” Steve for coming to visit today, and keeping our bellies full and our hearts warm.

Saturday June 5, 2004 Day +135

A day filled with love

Medically, we are still the same as yesterday. Christopher is hanging stable (but still critical) and has reached a plateau.

We had many visitors today, who provided an atmosphere of love and prayers for Christopher. One of the things I have felt most guilty about during his hospitalizations is I haven’t been able to provide him with many things to smile about. His days are filled with machines, tests and medicines.  I believe he may have been smiling under all that tubing today, and showed us signs he wanted to “come back and play with us.”

His hospital room was filled with his “Aunties” Becca, Mary Kate, Gina, his “Uncles” John F. and John L. , “Surrogate Grandma” Sheila, and Pastor Don. (“Auntie Walkup” came by yesterday on her lunch hour to give him a kiss). We will never be able to think our friends enough for coming up to be with us. Christopher had not been responding much and we were worried. Auntie Becca held one hand, and Auntie Mary Kate held the other and he started holding their fingers. When Auntie Gina kissed him on the head, his eyes fluttered and his legs moved. He was such a flirt before transplant, perhaps he was waiting till all the ladies were surrounding him and giving him kisses before he decided to move again.

As a  mother I rack my head everyday to try to heal Christopher. I believe as a mother, nurse, and patient  healing is a two fold process. One part is medicine, the other is the way we react to the situation.  The only thing I have control over in this situation is how I respond to what is around us. I work to create an atmosphere of love for him to heal. I am blessed to have friends who love him and give him kisses. I read him books, and play Disney music. Somewhere under all that tubing I pray he feels the angels of all the prayers that are being sent to him. I created this website to help save his life. Prayers work miracles, and the more prayers, the more powerful the love will be he feels.

Friday June 4, 2004 Day +134 10 am

Nothing new to report -this is good! We are just hanging steady, still intubated. We have been able to come down to 50% on the amount of oxygen he is receiving (which means the ventilator is giving him 50% oxygen and he is making the other amount). We have also been able to cut back on the amount of nitric gas he is receiving (this is also blowing in his lungs to help keep them open). His blood gases aren’t perfect, but they are holding steady, close to normal but not quite there yet. A blood gas gives a more accurate reading of the gases present in the blood (Carbon Dioxide and Oxygen). Christopher is still on the “mac daddy” ventilator, and probably will be for another day or so to allow him to heal. After his gases improve even more we will go back to the regular ventilator, than we can extubate from there (which is still a while off).

His liver ultrasound came back fine, no structural damage. His liver took a huge hit when he crashed, your liver numbers should be 50, and his was 9,000 (but we came down to 3,000 last night).

We are still fine tuning the Peritoneal Dialysis. Christopher is very swollen looking, but we are slowly getting the fluid off. We think we even found a drop of urine in his diaper!

The PICU here is incredible, they saved his life. However, it has gotten very sad. Almost every family we have met  had a child who has passed away. Joe and I have started allowing friends from home to come and visit. People have been asking for months what they can do for us.  We need you to remind us of the life we want to take Christopher back too, and you help keep us positive and focused!!!! Our friends bring us sunshine and hope and we that’s what we need now more than ever!!!!

Thursday June 4, 2004 Day + 133 9 am

A flicker of life…..

Joe and I were becoming concerned yesterday because Christopher was not coming out of sedation. When he was intubated he was given paralytic medication, and they kept him paralyzed for about a day (when you intubate somebody you give them drugs that  paralyze them, and they kept him paralyzed on purpose for about a day). He was not really coming out of his paralysis state, and there was the possibility of brain damage in the back of all of our minds.

The hospital chaplain came up about 11:30 pm and we prayed for Christopher, and our friend Zoe who became an angel yesterday. We than did an anointing of the oil, I made a cross over Christopher’s head, and Joe made one on his chest.  (Anointing of the oil signifies healing). I turned to the chaplain and said, “it’s not his time.” Joe gasped and said “Look!” Christopher moved his left hand and fingers.

Even though Christopher is still critical, still intubated on the “last resort” ventilator, I have to believe a flicker of life exists in him, and I am holding on to the little miracle he gave me yesterday.

As “Aunt Cassie” said yesterday when she visited, “This child is so stubborn.”  Christopher’s other “Auntie” Angie  believes he will grow up to be Hercules.

Wednesday June 3, 2004 Day +132 2:00 pm

Fight Christopher, Fight!!!!!!!!!!!!!!

We are still in critical condition, but making very small baby steps. His blood gases are still not in normal range, but getting very close (a blood gas measures the Carbon Dioxide, Oxygen and pH in your blood). We have been able to stop the epinephrine drips, he is maintaining his blood pressure on his own. Epinephrine constricts the blood vessels, and causes you to have a blood pressure. The  doctor told me the amount he was getting was considered an “arrest” dose. His heart was getting stimulated every two minutes by the epinephrine to keep going. This went on for hours on Monday, and they slowly weaned him off the last bit of epinephrine last night called phenepinephrine.

He’s still on the oscillator vent, in addition to receiving nitrous gas to keep his lungs open. However, his oxygen saturations are getting better and they are trying to wean him off this onto a regular ventilator within a day or two. The peritoneal dialysis is going slowly, but for now it is working OK. Also, his liver function tests are very high. We are not sure if his liver got damaged from lack of blood flow on Monday. However, the doctors are not worried about this, the liver regenerates itself and can grow back what is lost.

Christopher is slowly coming out of the paralysis medicine. We hope, but don’t think, he has any brain or neurological damage. We were still able to keep a blood pressure and keep oxygen to his brain.

The doctors still don’t know what happened to cause him to arrest. His white blood cell count is 23,000, so his body is mounting a response against something (normal is 6,000-10,000). However, not bad for a 4 month old immature immune system to mount such a wonderful response!

We know we are still in a critical situation. At any minute he could arrest again. We are not out of the woods, and I still pray for a miracle. We still feel this little boy is meant to be here, and he is fighting. He is showing us he is trying to come back to us. Family and friends help us to maintain a 24 hour vigil at his bedside. We tell him we love him and come back to us. All I have left are hope and prayers and that is what I am clinging too.

We have received so many e-mails and want to thank everybody. I only leave the hospital to shower and write an update and apologize for not getting back to anybody. We love and appreciate them allHopefully soon I will be able to catch up.

Thank you to “Auntie Amanda and Uncle Craig” for visiting and bringing goodies last night. Our friends near and far give us hope and remind us to hold on.

Tuesday June 1, 2004 Day +131 8:00 pm

Christopher is making the slightest of improvements.  His dialysis is going well and so far no leaks.  He has gotten fluid overloaded from yesterdays debacle and they are going to slowly get it back off.  They have also made progress on weaning the oscillator settings slightly.  He is on almost no blood pressure medications at this point and is holding steady.

The doctors feel that Christopher is responding as good as they could have hoped to his treatments.  They are not sure what medication is doing the trick but one of them is killing the infection.  They hope to have him off the oscillator and onto the regular ventilator in the next day or so.  This would be huge step in the right direction.

Christopher is fighting and Paige and I are not going to give up until he does….

Tuesday June 1, 2004 Day +131 9:15 am

Christopher is still very sick, and very critical. He made tiny improvements overnight, but things could still change at any time. He’s holding his own, and we have been able to take him off of some of his medications helping him to maintain his blood pressure. At one point yesterday the medications were the only thing giving him a blood pressure. He’s still on the oscillator vent (basically your “last resort” ventilator). We have to start him back on dialysis today, and will start on peritoneal dialysis (dialysis through the tummy). Even though it has only been a week since surgery, we have to take the chance and try. If the peritoneal dialysis doesn’t work we would have to go back to the dialysis machine. This wouldn’t be good. The machine clots, breaks, and  causes electrolyte imbalances. The peritoneal dialysis HAS to work, we need a break.

Nobody knows why he crashed. All of his cultures for bacteria, virus, fungus, are still coming back negative and we can’t find infection anywhere. He’s on 6 antibiotics, and 2 antifungals (in addition to everything else) in case their is something lurking around we have not been able to find.

We still take life one minute at a time and hold our breath. Please, please keep praying for a miracle. Pray for his lungs to heal, his kidneys to work, and for him to keep fighting. I really don’t think it is his time yet. We are 131 days post transplant, and have fought so hard and so long. He beat the battle against Hurlers, we can’t loose him now.

I always sing Christopher a song about caterpillars turning into butterfly’s .I found a necklace I wear around my neck that says ” Just when the caterpillar thought the world was over, it became a butterfly.”

He is still critical, and I am still fighting for a miracle. Please help us to fight.

We want to think our friends, family, and ministers who have come to stand by our side. People are always at his bedside and willing him to live. All we had to do was make a call yesterday, and everybody came. Some of his doctors who were off duty came in on their holiday  yesterday to help us out, thank you Dr. Williams and Dr. Kahler.

Monday May 31, 2004 Day +130 8pm

Christopher is still very sick but has somewhat stabilized.  He is on an oscillatory which is a type of ventilator keeping his lungs expanded and oxygen moving through.  His blood pressure is still very unstable and they have him on two medications to manage it.  They have lowered the settings on the vent and his dosage of blood pressure meds.  This is an optimistic sign that he is responding to the treatments today.

The doctors are almost certain he has an infection, mostly likely a fungal infection in his lungs and possibly his blood.  They are treating him with several different antibiotics and antifungals.  Now its a waiting game to see how he reacts.  There is no telling what lye’s ahead for Christopher.  Please keep us in your prayers and hopefully our next update will be a good one.

Monday May 31, 2004 Day +130 2pm Memorial Day

Christopher may die. He is very, very sick. He was doing fine, than he crashed over night and his left lung collapsed. He went into respiratory distress, and has been on 3 different ventilators. His lungs are very bad. He has a heartrate, but it is only because of the medicines we are giving him.

The doctors gave us “the talk”. This is the first time we truly have felt he might not make it. We need a Miracle. He is very close to death.

Saturday May 29, 2004 Day +128

By Joe:

Today was uneventful.  We like these kind of days.  Christopher was on Bi-Pap ventilation most of the day which is a face mask that blows are into his nose to keep his lungs expanded.  He is not a big fan of this but it prevents him from having to be intubated.  His lungs are still wet but from the CT scan yesterday and the x-rays. The chance of an infection or pneumonia is always  likely.  He had a very restful day and looks a little better than yesterday.  We had so many problems with the dialysis pump over night, and he accumulated fluid which seems to go straight for his lungs. The pump breaks down every few hours, he looses blood and the we have to wait hours to get the pump restarted. It’s an awful cycle. The hope is over the next couple of days to get him dried out and his lungs to improve so he can get off respitory support.

These last couple of days have been very hard for both of us.  We are so emotionally tired and watching him lay there and whimper breaks our hearts.  He is so uncomfortable with this breathing mask on and I hope each day that his lungs will get better so he can breath freely again.  The dialysis pump is a blessing and a nightmare.  When it works its wonderful but when it breaks down we lose any ground we gained.  I know Christopher is strong and continues to fight.  We just want him to heal and be a little boy.  He has spent more than half his life in the hospital and we know that this is all he knows.  He probably doesn’t remember what home is and may not see it for another couple of month’s.  Each day we search for the energy to keep going, we know we have to because he is still fighting.  The sadness is becoming overwhelming and we want so much to just take him home.  We ask God each day to give us the strength to get through another day.

One of the hardest parts of this phase of Christopher’s journey is leaving him in the PICU.  We know that we need rest but we feel guilty leaving him. (We are not allowed to spend the night)  We stay with him all day and late into the night.  We get up as early as we can muster and start again.  We feel so guilty going home at night to sleep. Sometimes we will sleep on the bench’s or chair’s in the waiting room, Paige has even slept on the floor when he had surgery.  My heart is in my stomach every time the phone rings at the Children’s House.  We are waiting for that emergent phone call.  When we walk in the room in the morning we are not sure what we are going to find.  Sometimes he is exactly as we left him, other times he is on a new type of breathing apparatus, the dialysis pump broke, he has a fever, etc.

Somehow we must go on, for no other reason than our son keeps fighting.  He is to young to know any different and everything he does is based on the simplest of human instincts.  Pain, hunger, cold, hot, tired, angry, etc.  We know that he is to young to feel emotion or at least that’s what we tell ourselves.  This is the only thing that comforts us when we leave our baby alone at night in the PICU.  From what we understand Fairfax hospital lets you stay in the PICU at night.  I can only hope so….

Thursday May 27, 2004 Day +126

A melancholy day. Christopher slept all day which he NEVER does. When I asked to review his records last night I found he had been getting pain medicine all night at a high dose (which I was not aware of) and he was pretty much zonked. We are very worried because one of our friends during transplant is very sick. I don’t know if she will make it.

I’ve been doing a lot of thinking lately……. I think about life, death, why people suffer emotionally and physically. Why children hurt, what is really going on in this world. So, I have added a whole new section to “Inspirations and Hope.” Just some thoughts and experiences. I hope they give strength to others out there in pain. Please click on “Inspirations and Hope” (or Lucy) for:

Praying over Nail Polish

Many thanks to “Aunties Jen and Saundra” for coming up and making me smile again!!!!! The wine and good food made me smile too!!! ?

Wednesday May 26, 2004 Day +125

Not a lot of information to report, we are just back on CVVH dialysis. Christopher is hanging out and sleeps some. Their is a lot of noise in the ICU so it’s hard for him to rest. The dialysis pump broke today, and he was off the pump for about 12 hours, but did OK. When he got back on the pump he got very cold and we had to use warming blankets, he also started throwing up some.

The PICU at Fairfax said they can take us next Wednesday! Please pray this happens, we have got to get closer to home. Due to the Memorial Day Holiday, there are staffing issues so we can’t get there until than.

I’m working on adding more to my “Inspirations page” and will hopefully have it up soon.

Tuesday May 25, 2004 Day +124

Emergency surgery late last night, a setback that will keep us in the hospital

We had to go for emergency surgery late last night about 11pm, they had to call the OR staff in from home. Christopher had been fine all day, hanging in his crib watching cartoons.  He’s also on Methadone right now to help with his withdrawal from the narcotics he was on-so he was very chilled.

About 8:30 I noticed blood on his favorite blanket, and the nurse and I went to pick him up to change his bed.  We saw a huge amount of blood coming from somewhere, and immediately thought his peritoneal dialysis catheter sight was leaking, when we went to check it, the site was fine.  As many of you may remember Christopher had a laparotomy (tummy surgery) about 4-5 weeks ago for a liver biopsy and had about a 3 inch scar. Well somehow his internal stitches popped from the surgery, so the external stitches (scar) popped open, and you could see all the way down to his liver.  Blood was coming out everywhere.  So I started screaming and almost passed out (trust me seeing your infant laying in bed watching cartoons with a huge hole in the side you can see into is pretty traumatizing).

The surgeon came in, and we had no idea how his stitches popped internally. It could be because of the peritoneal fluid in his tummy, and the steroids he was on (steroids cause lack of healing). He had scarred wonderfully.  I had been looking at it that afternoon and it was a beautiful scar.  When he went into surgery the doctor used a very heavy suture that will not absorb and said he could see where all the original sutures had just popped.  The whole thing is very weird, and just floored everybody including the doctors.

However, in the course of doing this we can no longer do peritoneal dialysis, because the fluid would go into the tummy and not allow it to heal.  So the doctor had to put in another femoral line and Christopher had to go back onto the CVVHD  machine dialysis. He’ll be strapped to the machine again 24 hours a day.  We can’t try peritoneal dialysis for another 2-3 weeks until he heals.  Christopher had to be reintubated and back on the ventilator, he was extubated this afternoon with no problems.

This puts us in the hospital for at least another 6-8 weeks.

Despite all this, he is still fighting so hard. His blood counts looked better today and  his lungs are doing good.  His kidneys just still aren’t working adequately. (The bad part about going back on CVVHD is he won’t make as much urine, and he had just started making a few drops).  When he was sleeping today, he was holding onto the ventilator tubing, and still tries to extubate himself.  Because this is a huge setback, the PICU doctors are working very hard to get us transferred to the:

PICU at Fairfax! This will happen in a few days!

Joe and I are so tired, mentally, physically, and emotionally. The things we’ve been through, seen and have had to make decisions on are almost too much to handle sometimes.  I can’t even remember how many times we have been to surgery.  We’ve been in the hospital almost 6 months straight, and are now facing another 6-8 weeks of hospitalization. Christopher is still fighting, so Joe and I must still fight.  We need to be home, and around our friends who give us inspiration to fight.  For all of our friends who have asked what they can do to help us, we need you now!  Just help us to keep smiling, and keep fighting.

Sunday May 23, 2004 Day +122

Still in ICU, but we have less tubes.

We are still in ICU, but they have taken out Christopher’s femoral line in his leg, and arterial line in his arm. The tubes we have left are: naso-gastric and naso-duodenal, peritoneal dialysis tube, and a central line. He is still on a nasal cannula that is giving him oxygen (a nasal cannula is the tubing they put in your nose to blow oxygen in).

We are spacing his dialysis apart, and we are going up to 3 hours today. We were having to do peritoneal dialysis every 1 hour, but the doctors are starting to space it to doing it every 3 hours. We will eventually work to doing it to every 6 hours. Christopher’s blood pressure has increased again so we have put him back on blood pressure medicine.

We will be transferred to Fairfax Hospital PICU via ambulance by mid week! Fairfax Hospital is where I work and about 15 minutes from home. Yippeee!! We will be one step closer to bringing him home to our house.

Thank you for the prayers for our friend baby Brady. He is 3 weeks old, and got a liver transplant on Saturday! Please pray for our friend Dustin who is  to undergo extensive testing tomorrow to find out if his chemo is working, and all sick children battling to overcome diseases.

Friday May 21, 2004 Day +120

We have urine….just a little

Christopher urinated the slightest amount today, just a few drops.  We will take every drop.  This is a sign that his kidneys may be coming back to life, we will not know for a long time.  Keep your fingers crossed.  Christopher had his hemodialysis catheter taken out of his leg this afternoon after receiving a platelets pick me up.  One less foreign object in his body.  Tomorrow we are going to work on getting the arterial line taken out of his arm.  His Peritoneal Dialysis is going very well.  They have bumped it up to every two hours.  Once they get it to every three they feel we should be able to leave the PICU.  What this means to us is a trip to Fairfax hospital in an ambulance.  We may be coming home this week!

We had a little scare this afternoon.  Christopher has been very uncomfortable the last 48 hours.  He was stiffening his legs, his eyes kept rolling back in his head and he was shivering.  We went down for a CT scan to check for a blood clot or stroke.  All clear.  It seems that Christopher was taken off his pain medications to quick and was having withdrawal symptoms.  He was given a dose of pain medicine and he started to come around.  Hopefully we can wean him a little slower and not cause this anymore.

I got to hold my boy for the first time in three weeks today.  He hadn’t slept in two days and as soon as I picked him up he fell right to sleep.  I held him as long as they would let me, about 15 minutes.  What a wonderful feeling.

Thanks grand dad Lin for coming up and spending the day with me and taking me to lunch. Thanks also to Mr. Gai for coming to see Paige this week.

Say a special prayer for friends of ours at the Children’s House.  They are waiting for a liver to transplant their 3 week old boy Brady.  One was being tested when I left the hospital at midnight for a possible match.

Thursday May 20, 2004 Day +119

Christopher was extubated and came of the ventilator about 10am yesterday morning. Yeah! We had him on a face mask with oxygen blowing into his face, and he retained his oxygen saturations close to 100%. He keeps trying to “help the nurses” by removing his mask or sticking it in his eyes so we have to watch him closely. I’ve never seen his eyes more open or alert, he follows everyone around the room. It’s like when he was an infant, and the first time he kicked his legs or noticed I was his mom, I feel the same type of excitement. We have gone back in time and started all over again. He is very thin and down to only 15 pounds. He looks so fragile, I’m scared I might break him.

He’s doing good on the peritoneal dialysis, and the doctors may stop the hemodialysis today. We would probably leave the hemodialysis shunt in his leg for a day or two to make sure everything is OK, than we could remove it. And than we could hold him! I still haven’t been able to hold him in two and a half weeks.

I think (hope/pray) we may be a family again. I have had many days/weeks when I was scared we wouldn’t be bringing him home.

For all the wonderful people out there praying for us, thank you. Please continue to keep us in your thoughts and prayers. Please pray Christopher will continue to fight and remain strong. Please pray his kidneys will one day recover. They are still not working, and are on hiatus.  The doctors can’t tell us when or if he will ever regain kidney function. He could  be on peritoneal dialysis for years if his kidneys don’t start working again. I can’t even imagine the idea of a kidney transplant in the future.

Tuesday May 18, 2004 Day +117

Sorry for no update yesterday, it was a crazy day.

Christopher is doing good today, and will probably be extubated tonight. Yeah! We need things to start heading in the right direction. We still have to be very careful with his lungs, they took a beating and their is always the chance he would have to be reintubated if his lungs aren’t healing the way they should be.

We started peritoneal dialysis yesterday, however we are still doing CVVH dialysis for a few days to make sure the peritoneal dialysis is working well. The renal docs are happy with his progress on the peritoneal dialysis. He is still getting food down his naso-duodenal tube, and we are switching to a new type of formula.

Christopher kicked his legs today! I couldn’t believe it, I haven’t seen him kick or move his legs in probably 6 weeks, I almost started crying. He was kicking his legs with a legboard on his right leg. (They had to put a board on his right leg to keep the catheter protected for dialysis). The board had no effect on him, he was picking his legs up and throwing them down, and this is after they had given him sedation! He also managed (with restraints on) to somehow disconnect his  breathing tube from the ventilator. I almost feel like it is a miracle, seeing him kick his legs, and watching his eyes. His eyes are open all the time now and he watches everyone in the room. Such a simple thing, Christopher moving his legs, it makes me feel like I won a million dollars.

Many thanks to Dedra for coming up to visit yesterday and helping me keep my sanity during a stressful day.

Sunday May 16, 2004 Day +115

Christopher is still on the vent, and we had to go up on the amount of oxygen we were giving him. The ironic thing is his blood pressures have never been better! We have taken him off of all his blood pressure medications, except for his blood pressure patch on his back. Huge improvement! His pressures have come down by almost 100 points.

The doctors have a naso-duodenal tube down his nose (it’s a tube that goes from his nose, down his stomach into his duodenum, which is the beginning part of the intestines). They are giving him his formula, Alimentum through this.

We will start the journey to peritoneal dialysis tomorrow. It will take a few days to switch over from CVVH dialysis to peritoneal. I haven’t been able to hold him for two weeks, and my arms ache.

Christopher is so mad, and fights his endotracheal tube all the time. He broke out of his restraints, I was so proud! (His arms are restrained so he won’t pull his tubes out). He has had so much anesthesia, any sedative he gets has very little effect on him.

Saturday May 15, 2004 Day +114 11pm

Christopher has made progress today.  He is still intubated but they were able to reduce his Oxygen requirement from 100% to 50%.  The doctors have also been able to reduce the pressures needed to keep his lungs expanded.  These changes mean that Christopher’s lungs are doing better and are able to support him with less help.  His X-ray from tonight has also shown less infiltrate (More black on the x-ray instead of gray!).  They are thinking that maybe he doesn’t have pneumonia.  So he’s on lots of antibiotics and an antifungal just in case.

He was taken of off his Total Parental Nutrition (TPN) because his electrolytes were all out of whack.  Instead, he has a new feeding tube that goes directly into his intestines.  This will prevent him from aspirating anything from his stomach into his lungs.  Back on Alimentum.  He desperately needs nutrition.  We were so happy about this.  Any food he gets can help build up his strength.

Christopher is such a strong boy.  He is fighting so hard.  We still see the twinkle in his eye when he gets fired up and tries to pull out the tubes.  Keep us in your prayers.

Thanks Buddy for coming up today.  You are a blessing to our family.  Thanks to the grandparents too.  You help keep us grounded.

Saturday May 15, 2004 Day +114 8am

Christopher was reintubated and put back on the ventilator last night about 1 am. He was having problems breathing, and may have developed a slight case of pneumonia.

I’m speechless…….

Friday May 14, 2004 continued 7pm

We tried taking Christopher off of Bi PAP today, and we were only able to do it for a few hours before putting him back on. The oxygen concentration in his blood dropped too low with a regular face mask. The Bi PAP pushes air into his lungs, and is a small form of a ventilator. Right now we are trying very hard not to have to reintubate him. He has also developed a small case of pneumonia, and is on more antibiotics.

His adenovirus cultures came back negative again for a second week in a row, however we still have to give him the medicine to make sure their is no virus lurking around hiding. His nasogastric tube got stopped up and we had to put another one in. Ugggghhh!!! He hates NG tubes, and I hate them having to put one in.

He still whimpers with the Bi PAP mask on, and we just try to keep him soothed by rubbing his head. It’s this big contraption that goes across his face, I think I would whimper too.

Friday May 14, 2004 Day +113 12:30 am

Christopher is still on an oxygen machine they call bi PAP (positive airway pressure), and we are still trying to avoid having to reintubate him. This oxygen machine pushes air into his lungs, and is a huge mask that sits on his face. About every hour or so he’ll wake up, realizes it is there and lets out this little cry and moan. His oxygen lab numbers began looking better during the day, however there is still fluid in the lungs.  So, we just pray this continues to helps his lungs heal again and he won’t have to be reintubated. Maybe sometime late tomorrow they can switch over to a regular oxygen face mask, it’s still an hour by hour event. He seems so scared sometimes, I just pray he feels all the love of all the people praying for him and this brings him comfort.

The doctors think he may have aspirated (gotten some stomach contents or formula in his lungs) so we are throwing in another antibiotic to the mix.

As of 12:30 am today we have 16, 012 hits on this website. I am so overwhelmed. Thank you!

Thursday May 13, 2004 Day +112 1 pm

Prayers Needed

Christopher’s dialysis machine clotted during the night, and was off for about 6 hours (it runs for 24 hours a day straight). Consequently, fluid collected in his lungs and he has been having a hard time breathing. We are skirting the edge of him having to be reintubated. They have him on a special oxygen face mask that is beginning to help open his lungs up some.

OK, I hate this disease. I hate what all diseases do to children. If we had done nothing, Christopher would have been in pain (remember- Hurler’s causes multiple organ failure and death if left untreated), by trying to save his life we are having to cause him pain. Joe and I are constantly torn up by the treatments we have to put him through to try to save his life. Their is no justice with this disease, whatever course one takes is guaranteed to cause pain.

Wednesday May 12, 2004 Day +111

Still hanging in ICU

Non eventful day-hanging out in the ICU waiting for Christopher’s Catheter to heal. He looks like he is in not as much pain, but he looks very sad. Just seeing him lay there, so thin, unable to move, his eyes just look so sad. It breaks our heart so much.

The one surprise of the day that caught everyone off guard was Christopher has GVHD of the skin again stage 2. We had taken a skin biopsy the other day, but the oncologists and the dermatologists both thought his skin was getting better. We will have to stay on the high dose steroids for a while longer.

Much love and thanks for Cassie for kidnapping me and making me drink cosmopolitans and go shopping. I love you, thanks for helping me feel normal and alive again for a few hours!

Coming soon……. Information about the organizations Paige and Joe are starting to help children in the hospital.

Tuesday May 11, 2004 Day +110

We went to surgery today, AGAIN, and had a peritoneal dialysis catheter placed in Christopher’s tummy. No matter how many times I take him to surgery it never gets easier. Anyway, he came through with flying colors, the anesthesia docs said he was much stronger than they expected. He had to be reintubated for the surgery, and everyone was expecting to extubate him in the PICU. He was strong enough they could extubate him in the OR. That’s my boy!

I want to thank OR nurse M.H. for taking such good care of Christopher, and making me proud to be an Operating Room Nurse. I also want to thank nurses Jen and Alicia who came and sat with me during surgery. I was very upset Christopher was in surgery, and sad he would have more scars all over his precious little body, unfortunately I was flying solo today and was by myself. Because we have been here 6 months, Joe and Mom have used up a lot of their sick leave. We also know there are many more days of hospitalizations to come. Going to surgery has also become like going to the dentist it has gotten to be so common.

 They held my hand and instead of crying tears of sadness, made me cry tears of laughter. As Alicia reminded me, he could always get a tatoo of the Virginia Tech Hokie Bird over the scars, or make up a cool story on how he got them. (As long as it is not a tatoo of the UVA Cavalier, I think I would be OK with this). You guys were my guardian angels today and I will never forget you! By the time I looked at my watch again, and hour and a half had passed and the surgeon was walking out to talk to me.

We had to put a nasogastric tube back in him tonight. He was throwing up green stomach bile, and we didn’t want him to aspirate anything into his lungs. NG tubes are a bummer, because they are very uncomfortable (the tube is in your nose, throat and down to your stomach), and I know causes him distress. He’s in so much pain and so uncomfortable, I just want him not to be in pain right now. He is still on pain med and they give more as needed. He opens his mouth and tries to either cry at me or scream at me, but all that comes out is a little gasp. I think his throat will hurt for a while.

We will stay on the CVVD (dialysis) that we are on now for a while until the catheter in his stomach heals. Christopher will still be hooked to the big dialysis machine that runs 24 hours a day until the weekend. After this we can use the peritoneal catheter and it will be a little easier to do.

Monday May 10, 2004 Day +109

Extubated for a few hours!

Christopher’s chest x-ray was clear today so we got to extubate and take him off the ventilator around 5pm. However, he has to go back to surgery tomorrow for a peritoneal dialysis catheter and will probably have to be reintubated for a few hours. He will stay on his CVVD dialysis for the next few days until the peritoneal catheter heals and he can start using it. We also got to remove his nasogastric tube, but it may have to be put back in for a few hours tomorrow during surgery. At least he can have a few hours of relief. His throat hurts him a lot, he looks at me and tries to cry and nothing but this little raspy whisper comes out.

I have to say, I am very excited to be extubated today, but I was also a little sad today. Christopher looked at me with the saddest blue eyes. He has my grandpa’s eyes, and they are so deep blue, they reach you to your core. However, my “Papa” is one of my hero’s in life, and is truly God’s angel sent to earth.  Perhaps this is why Christopher has his eyes. Christopher has shown me God’s presence, and has truly become my hero. Whenever I look at him, I see my grandpa with all his courage looking back at me.

 Some people say 1 year old’s can’t feel emotion, but I believe they can. I feel so helpless sometimes. I just spend the day stroking his head, doing my own version of physical therapy on his arms and legs, talking to him about his dog, and telling him how much he is loved. I hope somehow he understands this and it gives him comfort.

Now, if we could only get him to urinate life would be so much better. This is the little boy that had the reputation of “sharp shooter” on the floor. He would hit the walls, your eye, whatever was near, didn’t matter. Sometimes I can’t believe he has gone into kidney failure on top of everything else and still has more pain to endure. However, despite this, I do feel we are turning a corner and can be transferred closer to home soon. Maybe his kidneys just needed to rest, they have been working over time. Please just keep those prayers coming, they really, truly are working in our lives. Their is so much more I want to add to this site, and hopefully soon I can catch up and share some amazing stories that have happened along our journey.

Thank you to everyone, from the bottom of our hearts for all your love. We are truly blessed. Thank you for all the cards and e-mails, I have received so many wonderful sentiments of support, and am trying hard to catch up on e-mails. Many thanks and love to “Aunties” Cassie and Angie for my beautiful flowers, they made me cry!

Sunday May 9, 2004 Day +108 Mother’s Day

Still intubated, on a ventilator and on dialysis

Christopher gave me the best give ever for mother’s day, a clear chest x-ray. His lungs look good, and the fluid seems to be gone. The size of his heart has even decreased. However, we still have to keep him intubated because he has to go to surgery on Tuesday for a new Peritoneal Dialysis catheter. His pain meds, and medications they are using for sedation aren’t lasting long, and they are giving him more. I think he wants his tube OUT and is fighting it hard.

He was having some electrolyte imbalances today, so they are changing around the way the dialysis machine works and what it pulls off. Besides all of that, we just sit and wait and hope he starts making more urine. He is making some, and hopefully it will increase over time.

We want to thank with all our heart our friends who gave up their Mother’s Day to be with us today. Pastor Don, “Auntie LaLa,”, “Uncle Marc”, & “Aunt Corey”. You gave me a wonderful gift today by seeing your faces and holding your hand!

Saturday May 8, 2004 Day +107 11am

Christopher is doing as good as one can for being intubated and on dialysis. They have pulled off a ton of fluid, and he is looking more normal again. His whole body has atrophied, and Joe and I try to do range of motion activities with his limbs to keep his muscles moving.

His chest x-ray cleared up much quicker than expected, and his lungs are looking good, however, he will probably still have to be intubated another week. We now have to switch over to another form of dialysis called peritoneal dialysis. We will go to surgery and they will put a new catheter in his tummy so we can do dialysis through his tummy (right now we have a line in his femoral artery in his leg). I’ll try to post more on the different types of dialysis later.

The only bummer with this, is it takes 4-5 days for the catheter to heal so we have to stay on the CVVD (continous venous-veno dialysis) that we are on during that time. Christopher has to keep his leg completely still, and you can’t tell a one year old not to move. It’s a bummer he will have to stay intubated so long, with his lungs looking so good, but we have to do it until the Peritoneal Catheter heals. Hopefully we can go into surgery Monday or Tuesday and he can be extubated (breathing off the ventilator and on his own) by the end of next week.

His skin looks a little GVHD flaring, so we are putting him on some extra medications. We have stopped the TPN nutrition, and are putting Alimentum (formula) down his nasogastric tube. We feel good about this since it will help keep his gut moving.

Thursday May 6, 2004 cont. 11:30pm

Negative, Negative and Inconclusive…..

Good news late tonight at 10:30. After asking the doctors all day long about the adenovirus tests, being told that the lab closed and never called, our night nurse happened to mention in passing that his test for adenovirus came back negative….  The Virology lab called back after checking messages the resident had left, and at 7pm told the resident that Christopher’s blood and urine adenovirus tests came back negative.  His lung test was somewhat inconclusive because the culture came back changed but not negative or positive.  So the doctors are taking this as a negative at this point….. They will rerun the test next week to double check, he will probably have a bronchoscopy to gather deeper lung specimen and gather more cells. The doctors will decide tomorrow if he will get more Cidofivir (anti-viral medicine to treat the adenovirus) as an extra dose. Cidofivir is hard on the kidneys, but the dialysis machine may help with the treatment.

So we continue on the same track.  Dialysis 24 hours a day until his kidney’s get better (probably another 5 days) and a breathing tube until his lungs dry out. He is still intubated and on the ventilator. The doctors took him off of some of his medicines and he is not paralyzed anymore. He is on a constant pain drip that is keeping him sedated so he won’t pull his tube out.  He was started yesterday on Total Parental Nutrition (IV nutrients) and is getting a little Pedialyte through his NG tube to get his stomach working again. He is still very critical, but we literally take every hour as a goal.

Paige and I are not sure how to thank you all for your thoughts and prayers.  We have been overwhelmed by the thousands of people praying for our baby.  God has listened and offered up a negative adeno test.  Please know how thankful we are to everyone.  Special thanks to the grandparents and surrogate grandparents (The Millers and Garrets) for your encouragement and support this week.   Thank you Becky for the dinners, CUMC for keeping our stomachs full and our hearts lifted, friends for always reminding us that you are there, the JH Genetics team and PCRU nurses for always being positive and keeping us motivated.  And for the countless folks who have prayed for us that we will never know.  Thank you for being our angels. Please keep praying for us, we have so much longer to go, and you are helping to save his life.

Thursday May 6, 2004 Day +105 – 12noon

Christopher is having another good day.  So far no results on the adnovirus test.  He is on 45% oxygen and they have lowered his respirations on the ventilator to allow him to breath some on his own.  He has lost a bunch more weight over night and is about half way to his fighting weight (9.5 kilo’s, he is at about 10.25 kilo’s).  His swelling is getting better by the hour.  He is also becoming a little more alert and opens his eyes when he hears our voices.  They are keeping him sedated still so he won’t fight the breathing tube.

We want to thank everyone from CUMC for the prayer vigil last night.  All your prayers as well as the prayers from all our friends and family are working.  God is answering our prayers by giving the doctors the wisdom to treat Christopher.  He is such a strong boy and we are so proud of him.  He is getting better every hour.  Thank you all for what you have done for us.  Keep praying today.  We should have the results of the adnovirus tests this afternoon.

Wednesday May 5, 2004 Day +104

Christopher is still intubated and hooked up to the ventilator that is helping him breath. He is able to breath on his own some, and the doctors have him only on 50% oxygen, however he is still maintaining his oxygen saturation at 100%. This means he is breathing a little on his own, and the machine is doing the other half. His lungs look bad so this will help him to rest. Whenever someone has a breathing tube in they have to be deeply sedated, and sometimes paralyzed. He will still hold a finger and won’t let go. He opened his eyes a few times and would than close them. Aunt Lindsay and I were having a “discussion” across his crib and he opened his eyes, looked at us both, and shut them again. I think he was trying to say will you two sisters please get a grip and stop fussing after all these years!

After a lot of problems getting dialysis started, it fully got cranking about 6am this morning. There were a lot of problems over night, and they had to stop and restart the machine. The nurses also had to fix his line again. They are able to pull off fluid, and have been able to start pulling off more fluid as the day progressed because he could handle it. The machine will run 24 hours a day for the next 7-10 days, and he may be intubated the whole time. No one knows, we take it one hour at a time. He had a few drops of urine today, but I will take every drop I can get.

He is still very critical, but I feel we made a start today with the dialysis. We will get the adenovirus results back probably tomorrow.

We want to thank with all our heart our wonderful church family who arranged a prayer time for Christopher tonight at Centreville United Methodist Church. Thank you Corey,  for setting this up. We want to tell the New Covenant Class, we truly love each and every one of you, God has put you in our lives and you will never leave. To our amazing ministers, you make the long drive Hopkins multiple times a week and help us hold on. When our minister Samantha walked to his crib today, Christopher opened his eyes and looked at her. I believe he felt the presence and love of prayers.

Thank you to Aunt Linz and Uncle Brad for puppy sitting.

To our readers and friends:

You give us strength, hope and courage. Without hope their is nothing. The e-mails we have received are incredible and melt my heart. Joe and I cherish each and every word of encouragement, and it is what keeps us going.

Tuesday May 4, 2004 contd. 10:47 pm

Today was a very long day and we had the following done:

  1. Intubated (the tube had to be readjusted several times throughout the day). He is now on a ventilator that is breathing for him.

  2. He has a foley catheter to collect urine, and a nasogastric tube that runs from his nose to his tummy to help suction his tummy and give meds.

  3. An arterial line put in his left arm that gives a constant read out of his blood pressures.

  4. A trip to the OR for a shunt to start dialysis. The shunt did not start when the doctors went to hook him up to dialysis, so they had to put another one in. This one still didn’t work, so surgery came again and after the third shunt they got dialysis to start. The shunt is in his right femoral artery (the top of his right leg). We got dialysis started about 9pm tonight.

The doctors continually do blood draws and monitor his blood gases, lab values, etc… He has at least one nurse, sometimes two. His lung x-rays still don’t look good. The one positive thing to end the day on is he was trying to pull out his breathing tube. I feel this means he is trying to fight.

We want to thank all the wonderful people who e-mail and call us. You have no idea how grateful we are for your love and support. Thank you for praying us. Sometimes my faith flounders and I wonder where is God? An innocent baby struggling so hard to survive and we don’t know what his outcome will be. The support we receive from people gives us the strength to put one foot in front of the other. We are blessed to receive so many wonderful , heartfelt messages of support. Please keep us in your heart and continue to pray for Christopher. The only thing I know to do to help save him is to pray.                              

Tuesday May 4, 2004 Day +103

Christopher is very, very sick.

We had to intubate Christopher today and he is on a ventilator. We are waiting to go to surgery to have a shunt inserted so he can start dialysis as soon as possible. He is very sick. I am going to be honest, we don’t know if he will survive. One of his x-rays looked different today than the rest of his x-rays. The doctors don’t know if he has adenovirus that has spread to the lungs. If he has adenovirus in the lungs, there is not much left for us to do, and we will have to make to make decisions.

The doctors have him sedated because of the breathing tube, however, he will grasp my finger.

Please, please keep praying for us. He is very critical. We won’t get the results of the adenovirus from the lungs back until Thursday. If it is negative, he may or may not be able to handle the dialysis. His lungs have also taken a bad beating. If he requires long term care in the PICU we have asked to be taken to Fairfax so we can be closer to home. I believe they can provide the same level of care, it’s just a point of them accepting us. I feel we need to be close to our church, our friends and our family. We will know better by the end of the week.

Pray the adenovirus culture comes back negative in his lungs. Please, we love this child so much. I truly in my heart don’t believe he is ready to go to heaven yet and is meant to live a life here. I can’t imagine my life without him.

Monday May 3, 2004  Day +102

Please, Please, Pray for us. Christopher is very critical.

We are in the process of being transferred to PICU. Christopher may need to start dialysis, the doctors will decide when we get to PICU. He is retaining a lot of fluid, and is not urinating it out. The doctors have been giving him diuretics all weekend to help him urinate, but he isn’t urinating at all. We don’t know if his kidneys are shutting down, or if this is just a temporary thing. If he has to start dialysis, surgery would come up and put another line in him. The only positive thing we have going for us right now is his blood pressures have come down, his counts are up, and his electrolytes are in balance. He has been having a lot of pain and we are giving him intermittent pain medicine.

We are so scared about possibly having to start dialysis. Please pray for a miracle for his kidneys to heal, we are desperate for a miracle.

Saturday May 1, 2004 Day +100

Day 100!!!!!!!!!!!!

Christopher’s counts have come back up, and his WBC is 7,000 and ANC 6,000. Thank goodness! We have slowly been giving him blood over the past few days which has helped his Red Blood Cells come back up, however his platelets are still very low. His platelets are 11, normal range starts at 150, so he has lots of bruises.

The adenovirus is the main concern of the doctors now since it has traveled to the blood. We had to give him medicine yesterday which required a lot of fluids, so once again he is blown up like a balloon and has a ton of swelling. The doctors are giving him diuretics to try to get the fluid off, but it’s not working well.

Christopher had also been screaming in pain and we went to get an ultrasound yesterday which showed ascites in the stomach. Ascites is extra fluid in the stomach. His tummy is absolutely huge. The extra fluid has caused his blood pressures to rise again, and he is getting extra medicines. If it keeps up too long, we may end up back in the ICU. We don’t know what to do. We get one thing resolved, and the next day it is a new crisis. It is like this everyday, it feels there is never a good day. We are stuck in the “hospital spiral” that causes you to go downward in a hurry.

Joe and I feel like we are drowning. The pain can sometimes be suffocating. To watch a child live with a chronic illness, it feels like a million knives stuck in us. Actually, I think the knives would be less painful. I hope, and continue to pray we will somehow get past this. I worry because I feel he is not leading a healthy quality of life right now. Maybe this will bring him a quality of life one day. The folks from University of Minn. (the “Big” Hurler’s treatment place) have contacted Dr. Kahler about his enzyme therapy experience with Christopher. As my husband, who was calming me down tonight from crying, reminded me maybe somehow our experience will help other children with Hurler’s out there. Who knows? Or maybe this pain is what parenthood is all about. Without pain, you can’t have beauty and this little boy has taught us all about beauty. I think about the poem on our “Inspirations and Hope” page, “Welcome to Holland”. It reminds me to try to find beauty in this chaos.

Thursday April 29, 2004 Day +98

Christopher’s counts are very, very bad. His white blood cells have crashed down to about 1,000. His platelets and Red Blood cell’s are also very low. He will be getting blood very slowly tonight. I walked in this morning and just about died when I saw his counts. I prayed we needed a miracle, than the doctors came in and said they think one of the new medicines we put him on had caused his counts to plummet. They are working on finding us a new blood pressure medicine. We also went over to cardiology to have an echo done, which shows the pericardial effusion around his heart has decreased (the fluid has decreased around his heart).

We would like to thank Samantha, Gai, and Don from church who visit us.

We want to thank our readers for your continued support. We need a MIRACLE to get Christopher home at this point. I simply don’t know what to do. It is a new hurdle every day. We see small goals being accomplished, but our big goal of getting him over this Hemolytic Uremic Syndrome will be critical. Please, please, continue to keep us in your prayers. Please pray for a miracle to heal his little body.

Wednesday April 28, 2004 Day +97

Just another day of hanging out in the hospital. Christopher’s counts are down and his creatinine (kidney function we want to be low) is up. Since his blood counts numbers are low, it means we are waiting for the Hemolytic Uremic Syndrome to still resolve. We did get to cut down on his steroids some more today, which may help his blood pressure. However, his skin is having a GVHD flare and is red again, so we have started him on another IV form of immunosuppresant. We are now giving him IV Cellcept, which we were giving him orally (we took him off of it because we thought it was making him sick).

He drank 16 ounces today! 8 ounces of Pedialyte, 8 ounces of Alimentum! Huge accomplishment. He will only drink one sip at a time, but that’s OK because it eventually goes down. Also, Dr. Kahler our geneticist says Christopher is now “sleeping like a baby”. His breathing sounds so much better, you can’t even hear it! One of the early indicators of Hurler’s was his breathing. He sounded like an old man with a sinus infection, snoring, whenever he breathed. This was all related to his trachea and nasal passages.

Most of his swelling has gone down. He looked very pale and gray today, and his arms looked atrophied, with no muscle tone. It broke my heart. When he gets home, it’s sunshine all the time! Joe and I were talking today that we have to go back in time about 5 months and pick up where we left off, but it will be harder this time. We all need to get home very bad. Christopher needs to be a baby, and we need to return to living. The days seem to have gotten longer and harder, and we know we are still climbing a mountain. However, we know this sacrifice is what will give him a life to lead.

Tuesday April 27, 2004 Day +96

Sorry it has taken me a while to update. With Christopher in the PICU I didn’t have access to my computer.  I am also very sick and am in that “haze” you get when you are so sick you can’t hold your head up. Anyway, enough complaining, we are out of PICU, we moved this afternoon. The doctors wanted to move him yesterday, but I didn’t feel comfortable with him being moved, his blood pressures were still unstable. They remained unstable all day yesterday, and required a lot of medication. Today they looked good enough to go to the floor.

The main things we will be watching our his kidney functions, and blood counts. All specimens we sent to test for the HUS came back as negative, however the doctors are putting him on a strong anti-fungal medicine. A lot of post transplants patients have problems with fungus, that simply does not show up on any tests. We all have fungus in our bodies, it’s a natural thing. However, most people have a strong enough immune system to fight the fungus and keep it under raps. However, immunosuppressed patients have to be careful since their immune system is so fragile, and not let the fungus take control of their body.

We also have to really watch his kidney function. His Creatine (measure of kidney function) is coming back very high. It should be about 0.2-0.3, his is at 0.9. They have taken a beating. Also, Christopher has now tested positive for adenovirus (cold virus) in his blood and has to get a medicine called Cidofivir that can cause more damage. So, one day at a time, and I pray once we get his medicines straight, his kidneys can heal.

Sunday April 25, 2004 Day +94

Still hanging out in the ICU

Christopher’s blood pressures were still high all day. They are giving him many diuretics to help get the extra fluid off, and help him urinate it off. The doctors also put him on more blood pressure medicine. When I left tonight his blood pressure had finally come down, and he was more alert. He’s lost a little of his fluid weight, but still has more to go. I figure we will be in another few days. When a person has extra fluid you have to take the weight off very carefully. The PICU team is awesome, and we have 100% confidence in their care with Christopher. He even drank two ounces of Pedialyte tonight and didn’t throw up! We can also distinguish more of his facial features, his face is slowly going back to normal. He was so swollen you couldn’t make out features.

Joe and I decided to cut back the amount of pain medicine he is getting. He was in some pain after surgery Thursday, and we will probably cut off the continual infusion tomorrow. We will give him intermittent medicine when he needs it. He was TOO comfortable this morning, and we decided it was time to go down on the pain medicine.

We want to thank with all our heart Mighty-Max’s entire family and Aunt Dana. We received your bag of goodies today and you continue to fill our hearts with hope and love. We have been so blessed with so many angels that have been put in our path.

Saturday April 24, 2004 Day +93

Happy 1st Birthday Christopher!

We all Love You!

A wonderful Birthday morning followed by a trip to the ICU

Despite being in the hospital for his first birthday, Christopher’s birthday was filled with more love and happiness than I could ever imagine. The nurses in PCRU (the floor he was transferred to) surprised us by having his room decorated when we were transferred. It was filled with signs, and streamers, and brought tears to all our eyes. Our angel Nurse Becky made sure we had a cake and party favors, and the Child Life Coordinators brought cards and toys. Nurse Grace brought some snazzy new outfits and balloons for his room, and Nurse Alisha baked cookies. The grandparent’s came up, Aunt Lindsay and Uncle Brad, and “Aunt Meredith” and “Uncle Don” came from Va to visit and deliver food. Even though Christopher was a little sleepy from his pain pump we did sing Happy Birthday and stuck his hand in the cake. We want to thank all our wonderful friends who sent cards, gifts, and phone calls. We are so blessed to have you all in our lives and our sorry we are so behind in returning calls and thank you notes Even though today was never what I expected, it was filled with a different type of love and hope that is greater than I could have imagined. There are so many wonderful people who continue to bring us love during our darkest times. However, in true Christopher fashion, he has to make sure every day is filled with excitement and we ended up back in the PICU about 7pm. (You would think his birthday would be excitement enough for one day)!

We went to the Intensive Care Unit because his blood pressures became too high again, and he was retaining too much fluid. His heart rate was also high, and he was puffy and swollen again. In the Intensive Care Unit we can give him more medicines.

So here we are, 1 year later, right where we began. Christopher started off his first day in the Neonatal Intensive Care Unit, and 1 year later we ended up in the Pediatric Intensive Care Unit. After being in the hospital  and away from home for 5 months it’s becoming hard to “justify things” and make rationale. However, Joe and I figured we can give up his first year if it brings us many more years to come. I never imagined how one year could change your life so much! Not only have we become parents, which is a life altering event in itself, we have had to learn to overcome a chronic illness, away from friends, family and home. I haven’t even seen my dog in 4 months (in our house dogs are like real people). Many people ask how we do it, how we cope, and I don’t know. You just put one foot in front of the other each day, and just do it. God and fate guide those footsteps after that.

Friday April 23, 2004 Day +92

Christopher was extubated last night around 12:30 am, and is off the ventilator. They were trying to keep him sedated until morning to help with swelling, but he was fighting and trying to pull the tube out. Unfortunately, when the kids are in the PICU the parents can’t spend the night, so the doctor called the Children’s House about 12:45 am, extremely excited the extubation had gone well. They also removed his foley catheter and naso-gastric tube (a tube that goes from the nose down into the stomach) this morning. The PICU nurses have been great, and taken excellent care of him. We will be moved out of the PICU later today and into another room where he can still be monitored. He is still swollen, and has to heal from his surgeries. We have been trying to feed him Pedialyte, he’s starved. However, it comes up every time. A lot of times after abdominal surgeries patients have a hard time eating and drinking again for a few days.

I was so proud of him after the doctor called and said he had gotten off the respirator. He’s fighting so hard! I actually left the ICU about 9:30 because I was worried I was over stimulating him. Every time he would hear my voice or grandma or grandpa’s (Joe had to go back to VA for a few hours) his eyes would pop open and he would try to start “playing” by pulling his tubes out. After I got off the phone with the doctor I fell asleep thinking “You go Christopher and keep on fighting.”

Thursday April 22, 2004 Day +91

A stay in the Intensive Care Unit and a day in the OR

Christopher was transferred to the Intensive Care Unit at Midnight last night. He had been extremely swollen all day long and became fluid overloaded from all the IV fluids he was on. He was so swollen you couldn’t even identify facial features, and his eyes were swollen shut. I was than kicked out of my room at 2 am after Christopher being admitted to the ICU and forced to relocate. So, I packed all my stuff up in a wagon, and rolled  across the street at 2 am after having admitted my baby to the intensive care unit.

Surgery lasted about 3 hours today and the doctors and nurses were AWESOME about keeping us informed. The anesthesiologist, surgeon or nurse came out about every 20 minutes to give us an update. He had the following:

Ear tubes put in by ENT, a skin biopsy (his skin is beginning to show signs of GVHD again), removal of old central line, and insertion of new one, a laparotomy, umbilical hernia repair and liver biopsy. Unfortunately, when the doctors tried to do a laparoscopic procedure Christopher became unstable. When you do a laparoscopic procedure, you fill the abdomen up with gas, and it sometimes causes trouble breathing. It became too dangerous, with him being so swollen to do the procedure laparoscopic, so the doctors did an open procedure, which is open abdominal surgery. He has about a 3 inch incision on his tummy. When they went to make the incision on his belly button, over 100 cc of abdominal fluid came out, this is how swollen he was.

The doctors felt it was too unsafe to extubate Christopher (remove the breathing tube). So he is currently intubated (tube in his throat) and is hooked up to a ventilator/respirator that is breathing for him. They have drugged him so he is “out of it”, but he does respond to my voice, and Joe’s and will squeeze our fingers very tight. The doctors will extubate him in the morning when they feel he can breath more safe on his own, so he will stay intubated over night. He has a lot of swelling in the upper airway, and if they removed the tube too fast it could cause respiratory distress. They have him on pain medication and he is very comfortable.

The surgical team was incredible today, very kind and helpful. I got to help “gas him down” (the first phase of anesthesia in the OR and hold the little mask over his face). Since this is my job and I do it everyday it killed me to be doing it to my baby, but I had to be the last person he saw before he went to sleep. The drs. told us this was a risky surgery because of his current fluid overloaded status.

The doctor thinks the specimen he took from Christopher’s liver is NOT cancerous, and is just a benign piece of the liver. He sent a ton of specimens and we are waiting for the final results.

Please, please pray for his recovery. He keeps fighting his breathing tube, and trying to remove it so they had to put restraints on his arms. He will open his eyes some, and lock eyes with me, and seem to get some peace and becomes comforted again. It’s almost like he is trying to say, “OK mom, time to take the tube out and start playing.”

Tuesday April 20, 2004 continued 9 p.m.

After waiting all day we finally went to surgery. Poor Christopher had not eaten and was not a happy camper. We had the bronchoscopy and bone marrow aspirate done today. We have to move the central line revision and laparoscopy until Thursday because there was not enough OR time today.

The bone marrow aspirate went fine. The bronchoscopy turned out OK, and the doctor said he saw NO signs of fungus, virus etc… They sent a bunch of specimens from his lungs and we will wait to see what they come back as. All of his other blood cultures and samples are still coming back negative. The doctors still have NO idea as to what was on the CT scan and the infiltrate  on the lungs is.

He came out of anesthesia screaming and yelling, after all the surgeries he’s had we have never heard him scream this loud. He truly broke the sound barrier! I think he was in a lot of pain.

We are very worried about the laparoscopy on Thursday, and I pray they don’t have to do a liver resection and open him up. Please, please keep us in your prayers this week everything will be OK in surgery Thursday and they won’t have to do a resection.

We need all the prayers and miracles we can get.

Tuesday April 20, 2004 Day +89

Surgery today

We are waiting to go to the OR to have numerous procedures done. Christopher will have a bronchoscopy, bone marrow aspirate, new central line and a laparoscopy. Late last night the doctors told us they had reviewed the CT scan some more and found a mass/anatomic anomaly on his liver. They are not sure what it is, but we have to investigate. A laparoscopy is where a tiny incision is made in the belly button, and two other incisions are made. The doctors put their instruments and camera through the incisions and can see everything on a TV screen and manipulate their instruments by looking on the screen. However, if the mass turns out to be large, or needs to resected, they would have to make a big surgical incision and possibly resect part of the liver. We are all praying this isn’t going to happen.

Christopher is in his bed howling at the air because he can’t have a bottle since we have to go into surgery. It is so hard to believe the scan showed all this up. We just hope everything goes smoothly and with as few bumps as possible today.

Monday April 19, 2004 Day +88

Counts: WBC: 5140, ANC: 3187

We need a little miracle.

We were seen by half of the specialists in the hospital today. Cardiology came by and did an echocardiogram and found a little fluid around his heart, however they don’t think it is anything to be concerned about. Infectious Disease came by because they will be deciding on the medications. Nephrology (Kidney specialists) came by and will do some scans of his kidneys at a later time. Pulmonary came and looked at the CT scan. There are still spots on the CT scan nobody can figure out so we will go to the OR tomorrow for a bronchoscopy. It is a short procedure, but he will have to be intubated. They stick a tube into his lungs and do some washings to get specimens to be sent off for culture. If these all come back negative, the doctors may have to do a thoracotomy or thorascopy to take tissue from the lung. This would involve an incision and chest tube . I REALLY don’t want to do this, it will still be a few more days out to make this decision and will be dependent on the bronchoscopy. I also think I might request a repeat CT scan if we did get to this point to see if the mysterious lung nodule has gotten any better. Please, Please, pray we don’t have to do this. We really need a miracle to get out of here and to get him better. The drs. said they also found a small mass of connective tissue by the liver and they are not sure what it is.

The unbelievable thing is he has NO symptoms of lung involvement. No coughing, sneezing, fevers and his counts look great. His lungs sound wonderful when you listen to them.  He drank his bottle today and his appetite is better since he has been off of some of his old meds. Joe and I are just so blown away. We feel like we are back in the same place we where in back in January when we had to make the decision to transplant. Christopher had just turned around and started to look so good and we had to make the decision to start putting him through procedures.

Sunday April 18, 2004 Day +87

Still in hospital – We will be here for a while

Counts: WBC: 11,170, ANC: 7,931

We are still in the hospital for the Hemolytic Uremic Syndrome (HUS). His blood cultures showed his red blood cells are still looking “fragmented.” Red blood cells should be round in shape, and his look like Pac-Man. The doctors ran a Coombs test yesterday to see if his body was creating antibodies attacking his blood, luckily that test came back negative.

We had a CT scan done which revealed something very surprising. It showed both lungs, at the bottom of the lungs, are starting to develop some type of disease process. The doctors don’t know if it is viral, bacterial or fungal. On regular examination his lungs sound fine, and he has no fever or symptoms of lung disease. The doctors are going to start him on a parade of drugs to try to stop whatever process has started. They are trying to decide what drugs to start him on since they are unsure of the exact nature of what is going on with his lungs. I worry about the antibiotics, because they always make him so sick.

We have stopped three of his medications, and started him on two new ones. We stopped his immunosuppressants Cyclosporine and Cellcept, and started him on a new drug. The doctors felt like the cyclosporine was causing the HUS, and the Cellcept was causing the GI upset and vomiting. They think he may have gotten Cellcept toxicity. His appetite has improved today, and we gotten about 6 ounces of Pedialyte down without him vomiting. He hasn’t vomited in 12 hours, so we feel his GI tract may be improving. We also stopped his blood pressure medicine Norvasc, and started him on another medicine that might not cause as much GI upset.

Joe and I are very upset. We will have more consultations tomorrow by Cardiology because the CT scan showed a little fluid around the heart (but we think it is nothing).  Also, a pediatric radiologist will have a 2nd look at the scan closer.

His counts, blood and platelets are good, and he looked better today than he has in a while. We are trying to look at the lung infiltrations they found in his lung through the CT scan as something that was caught early, and we avoided what could be fatal lung infections later on. The drs. were not looking for anything on his lungs and found it, perhaps it was meant to be for us to be in the hospital now and have the CT done. It is the only positive thing we can think of to help make it through a bad situation again.

We obviously won’t be home for his birthday now. I know it seems like “just a day”, but to us it was a symbol of an entire year of fighting, so hopefully he can have many more birthdays. Joe and I just want him to be a “baby”, not a hospital patient. It breaks our hearts, we have both been having dreams of him doing “baby” stuff like running and playing.I really hope we don’t get stuck here for weeks. We really, really need to go home and be a family again. I will never again take for granted just the three of us in our own home, just hanging out doing nothing. It will be compared to heaven when we can be together out of a hospital and in our own beds.

Please, please, please, pray for a miracle. This little boy is such a fighter, he keeps getting knocked down and somehow finds the strength at one year of age to get back up again. He wants to live, and I believe he does have a life out there waiting for him. Please pray he will get there, he is so beautiful inside and out.

 Saturday April 17, 2004 Day +86

Counts: WBC: 8,260 ANC: 5,369

Readmitted to the Hospital – AGAIN

Unfortunately Christopher was readmitted to the hospital late last night about 10 pm. Of course I was in Virginia, I had gone for Dr.’s appointments, and Joe’s car had broken down so I ended up missing an appointment anyway. (Many thanks to our buddy Marc for rescuing me, and getting the car started, and saving the tow truck from coming)!

Anyway he was admitted with something called Hemolytic Uremic Syndrome. It is characterized by renal failure, hemolytic anemia, and thrombocytopenia. I am very confused on everything myself. Basically his red blood cells are sticking together, when they go through the kidneys to get filtered, the kidneys fragment the cells. The lining of the kidneys is messed up.This causes him not to get enough oxygen in his cells. His Red Blood Cells Counts and Platelets have dropped. He is getting Blood today. At this point they feel it is a mild case and we aren’t near a dialysis standpoint. This is all confusing, so I hope I am explaining everything OK.

Christopher has been throwing up A LOT, usually one to three times a day. We have taken him off of his Cellcept and Cyclosporine (immunosuppresant drugs). The Cellcept can cause a lot of GI problems so this may be the source of the vomiting. The Cyclosporine may have caused the Hemolytic Uremic Syndrome, so we are stopping this. Supposedly with cyclosporine this can happen after transplant. The doctors are putting him on a new Immunosuppresant drug called Rapamycin, and increasing his steroids. Since we are changing his immunosupressant drugs, we are watching for a possible graft vs. host flair. This is another reason they have admitted us.

We are suppose to go the OR two times next week, and hope we can still go. He is suppose to get tubes for his ears on Monday which he DESPERATELY needs. His head is totally full of fluid. He is suppose to go on Thursday to take out his central line and put in a Mediport, and do a bone marrow aspirate. So, we will take it day by day and see what happens.

I can’t believe we are admitted again and have taken a dip down on our roller coaster ride. I pray it is a small dip. We are so close to being home. The doctors are taking blood cultures and looking at the shape of his blood under the microscope all weekend (they can see if the kidneys are still causing it to fragment).

Please keep us in your prayers. I am worried about his long term kidney outcome, they have taken such a beating. Also, these post-transplant complications are the ones that are the hardest on the kids. We need your prayers more than ever right now.

Thank you!

All our love, Paige and Joe

Tuesday April 13, 2004  Day + 82

Christopher officially hates his room and fusses and cries all day whenever we are here. No matter how many toys, or how much I play with him he moans and fusses (this includes all hours of the day, even those when you should be sleeping). The second we walk out into the hall or the kitchen, boom! No more crying. He starts laughing and looking around. So off we went to Walmart today. Not one cry or fuss the whole time we were out, however, as soon as we got back to our room it started again! We bought some new toys for our friends still in the hospital to try and cheer them up. We will make our surprise toy delivery before clinic tomorrow. Surgery is scheduled for next Thursday, I know it will make life easier, but I am dreading him having to the OR and be intubated again.

After a little bit of paper work, faxes and phone calls, we found out we can officially start seeing the new oncologists in Fairfax. Yipppee!!!!!!!!!!!

His first appointment will be for April 26. I just work to keep him healthy so we can get him out of Hopkins. He still is not eating a lot or taking a lot of bottle, so I work all day long getting sips of bottle or food down him, and eventually he gets calories. Maybe when we get ome he will eat better. The funky scab on his chin is much better. I think his formula was just pooling and causing some skin breakdown. Please, please keep your fingers crossed we can go home. It’s gotten so difficult being here.

For our buddies in Northern Virginia, Joe wanted me to let everyone know he is a celebrity and was on Elliot in the Morning on DC101 for 5 minutes this morning.

Monday April 12.2004 Day + 81

Counts: WBC:5,780, ANC: 3,930

Regular day in clinic, non-eventual. Christopher has a funky scab on the corner of his mouth and chin, and they started him on two more medications. Unfortunately, there is no room on the surgery schedule this week, so we will have to wait until next week for surgery for a mediport. I’m still giving him IV antibiotics at home, and it is easier to give through his catheter now, so this may work out for the best.

The oncologists in Northern Virginia called us, and we are starting to get the paperwork rolling for transfer!

Sunday April 11, 2004 Day +80

Many thanks to Grandma Karen, Grandpa Lin, Uncle Brad, and Aunt Lindsay for bringing the Easter Bunny to us.

HAPPY EASTER!!!!!!!!!!!!!

We are so thankful for everybody and all our readers!!! Easter is a time of renewal and you have all renewed our hearts, our spirits and our lives. God has truly blessed us!!!!!!

Saturday April 10, 2004 Day + 79

Christopher woke up as an extremely fussy little guy today. It hit me, he’s bored! He has been in the hospital his entire life and has never had a chance to be a baby. I truly believe in a psycho-social component to healing, so today would be a total baby day. We put him in his stroller and took him to the Inner Harbor and he loved it. No grunting or fussing the entire time. He came home and played, and it was nice to have such a good day.

Christopher’s Badge of Courage

The only thing that bothered me about our trip to the Inner Harbor was the extreme rudeness of people. Christopher is still bald, and has to wear a green face mask outside. The amount of people who stared at him and made comments about the “baby” was overwhelming. It totally crushed me. I thought I was just being sensitive until at one point Joe stopped pushing the stroller and said “Do you see all the people staring at him?” I’m not a violent person, but I wanted to cause bodily injury to each and every person staring at him and kick them. Anybody that has a family member that is unique and special knows this pain I am talking about.

Having had open heart surgery twice, I myself have scars on my chest, stomach, back, wrists and hands. I have what is referred to as the “zipper scar” that is on my chest. When my grandpa had open heart surgery two years ago, I welcomed him into the zipper club, he told everybody he and his granddaughter were in the zipper club together. Over the years people have made rude comments about my scars. Even to this day, I will on occasion have someone point at my chest or make a comment about my zipper scar. My mom always called it my “Badge of Courage”. (When Joe and I were dating he called my zipper scar my Badge of Courage, and I knew than that he was the one, he said what my mom had said)!

So to me Christopher’s bald little head is his Badge of Courage. His hair will grow back one day, and he will stop wearing  his face mask in about 6 months. He will always have the scars on his chest from his central lines and Mediport. Maybe one day he will have hair that will grow over that. People will look at him and not even know the “Badge” he has already earned in life. Until this time I have been hesitant of people taking pictures of him. I didn’t want him to ever look back as an adult and see himself so sick. I was worried it would make him sad (I’m already thinking 20 years down the line). I think I will allow pictures to be taken again. He deserves to have a picture of what his Badge of Courage looked like. Perhaps a picture will give him “courage” if he ever faces difficulties as an adult.

Friday April 9, 2004 Day +78

Counts: WBC: 5, 970, ANC: 3940

Long day today, we have been at the hospital every day this week and we are all pretty tired. Christopher had an enzyme infusion today that went pretty well. We than went to the Oncology clinic, and he had a good checkup. He is starting to hold formula down and hasn’t vomited. We decided we will definitely go to surgery next week for a Mediport, and if possible tubes for his ears (if we get an ENT consult in time, if not we will get one when we get home). I hate having to go to surgery again, but the Mediport will be much better for him at this stage.

 After much begging and talking with the doctors, they said we may be able to go home to Virginia in two weeks for good! This would put Christopher in the day +90’s. (This can only happen if he is doing OK, please keep your fingers crossed). We asked if we could be home for Christopher’s birthday, and if all goes well me may be able to make it. That would put our last clinic visit at Hopkins on Friday April 23, and his first birthday on Saturday April 24! This is a HUGE goal for Joe and I, and means more than anything.  His first year of life, one solid year of chemo, transplant, hospitalizations, Intensive Care stays, surgeries and procedures can maybe come to a close. Perhaps his first birthday will mark a time of renewal and a new start for many birthdays to come.

Thursday April 8, 2004 Day +77

Counts: WBC: 5, 870, ANC: 4,813

We got discharged late today!

We got discharged late today, and got to go back to the Children’s Center House. Christopher’s fever broke and he was able to hold down Pedialyte and his medications. None of his cultures came back showing anything positive so far. So, this was either the stomach flu, a sinus infection, or an infection somewhere else (his cultures can still come back at any time showing growth). He will be on IV antibiotics for about 20 days, and Joe and I can administer those at home.

I ran into the Pediatric surgeon in the elevator, and had him come and take a quick look at his central line. He says it is definitely on it’s way of coming out. Central lines have two cuffs that help keep it in place. Both have come out. One good yank from Christopher being bored and out it will come. We will probably go back to surgery sometime next week to have a Mediport placed. A Mediport is a little bigger than a quarter and goes under the skin. We would put numbing cream on the skin about half an hour before he needs blood drawn. You can than use it as a vascular access device and use it to draw blood, or give infusions. Joe and I think this will be a wonderful solution.

With Christopher’s first birthday approaching in two weeks, I had been very upset the past few weeks about what Christopher is NOT doing developmentally at this point (such as sitting, eating etc…).  One of my sorority sisters, sent me an e-mail that changed my entire way of thinking. I would like to share it, and will also put this on my “Inspirations page” in hopes it may help others.  Here’s what she wrote:

Christopher may be "behind" in the "typical" baby milestones...but my goodness, he is worlds ahead of other babies his age in so many more ways.  

Christopher knows strength unimaginable to other 11 month olds, his "fight or flight" instinct is more refined than the majority of babies his age will experience in a lifetime.

 Christopher understands a parent's love more than other 11 month olds, having experienced the effects of unconditional love that most parents will only ever express to their child through words, but never have to actually show them what it means.  

Christopher has experienced the power of having the world pray for him, and felt the presence of God in his every pitfall and triumph.  And most of all, Christopher knows courage other 11 months old could never even imagine, nor would most adults.

To my dear friend April, thank you for changing my way of thinking. I will never worry again if he can’t sit or eat, those things will come with time. I will not worry if he isn’t crawling now, he will eventually. For now he has experienced the beauty of the world, and the love and kindness of friends and strangers That is truly a gift some people will never get, no matter what their age.

We would like to thank our wonderful friends Matt and Michelle Dates, and all their family and friends. Matt and Michelle held a fundraiser for us in New York. You hold a special place in our hearts and you have always been there to stand by our sides, be it out wedding day (Matt was our best man) or when our child is sick. We are blessed you have always been in our lives.

Wednesday April 7, 2004 Day +76

Counts: WBC: 11,700, ANC: 8,658

Lots of testing done today. Christopher’s central line is hanging on by a wing and a prayer, and we got a chest x-ray done to confirm placement. The stitches have popped on the outside that was helping give it support and stay in place.  We also had ANOTHER CT scan of the head done. The drs. want to compare it to the CT scan from last week to see if there has been any changes with his sinus’s. We also had a PUVA treatment. His GVHD is resolving nicely, but illness like this can cause flares so we have to be careful.

 Christopher was a fussy little guy today and didn’t feel well at all, I think he was in pain with his stomach. He was still vomiting until late last night. I got 8 ounces of Pedialyte in him today (over a 12 hour period) that he was able to keep down. I would give him a sip, than wait a while before he took some more. He was also rejecting his bottle and “moaning” all day. He does this grunt/moan when he hurts so we gave him some pain medicine. He was able to take 2 medicines by mouth and not vomit, which I felt pretty successful about.

He is on IV fluids, and all his other medicines have been switched back to IV. He was very anemic today and got a unit of blood. However, this is his first transfusion of platelets or blood in almost a month! Joe and I feel really good about that, the smallest things like not getting blood transfusions for a month make me feel so proud. It shows he just keeps on fighting.

No word on how long we will be in the hospital, I suspect through the weekend. His fever broke, and is back to a normal temperature which is very good. We are still waiting on the cultures we took yesterday to see if any bacteria shows up. Christopher’s on an IV antibiotic now, but if a certain strain of bacteria shows up, we would have to readjust his antibiotic.

So, I quickly readjusted last night to being in the hospital again. I forgot how nice it had been to sleep without IV machines going off every hour and the parade of people and testing all day long. Please keep those prayers coming we won’t get stuck in the hospital again. Christopher has such a hard time with no consistency and jumping from place to place. The poor little guy just doesn’t understand. I always try to bring his own blankets and quilts to line the crib with in the hospital so he can at least be comforted by his own belongings.

Thank you to everyone for your continued support and prayers!!! We are so thankful for everyone out there cheering us on!!!!

Tuesday April 6, 2004 Day +75

Readmitted to the Hospital

Unfortunately we were readmitted to the hospital today. Christopher has been throwing up, and can’t keep anything down. Because he has been vomiting, his immunosuppresant drugs are not being absorbed. These drugs are critical at this point in transplant. He has also been running a low grade fever, and his White Blood Cell Count is extremely high. If your white blood cell count shoots up high very quickly, it usually means your body is battling an infection somewhere. His has gone up by from 9,870 to 15,670 since yesterday.

His spirits are OK, and he has been playing a little. He plays, pukes, than goes back to his new “cell phone” (it’s really a plastic teether). They have him hooked up to fluids, antibiotics and more medicine for his adenovirus. His adenovirus has spread again. We will be in the hospital for a minimum of 48 hours, waiting for blood cultures to come back. I am so scared. I don’t want to get stuck in the “spiral” that often happens when you get readmitted to the hospital and end up staying there for weeks. We are so close to almost coming back to Virginia, I cried all day I am so heartbroken about being readmitted. I am very tired, please, please, pray for Christopher that he will be healed quickly and we can discharge him soon.

Friday April 2, 2004 Day +71

Counts: WBC: 10,760 ANC: 7,279

We met with the head oncologist today hoping to go home sooner than +100, no luck we have to stay in Baltimore a few more weeks. We were very disappointed, and are anxiously awaiting a transfer to our home hospital (and my place of work) Fairfax Hospital as soon as possible. There have been events the past few weeks that have prompted our longing to go to Fairfax for  and we will just have to take it day by day for the next few weeks.

Clinic went fine, but I think Christopher is still feeling bad from the sinus infection. He still vomits mucous once or twice a day. I feel like my new perfume some days is “Ode de vomit”.

They talked to us about getting tubes put in his ears and an Ear, Nose and Throat Consult, and we are totally fine with with this. I think it will help the chronic ear infections. It’s also very non-invasive and will be the easiest thing he’s had done. Just a little Versed, a trip to the OR, and Boom! Hopefully no more ear infections. We hope to see an ENT soon and would rather have tubes put in now sooner rather than later. He also grunts a lot. We think he may be trying to talk or make sounds and there is too much fluid in his ears. The tubes may also help with speech.

We got the results from his Glomular Filtration Rate test back and his kidneys still are not functioning  at the level the doctors wish to see. The level should be around 100, and he is at 43. He is still doing OK, and excreting what he should, there is NO talk of dialysis, however we will have to keep a very close eye on this over time.

Thursday April 1, 2004 Day +70

I can’t remember if I have shared some of the best news of all we have gotten recently. Christopher’s bone marrow aspirate from day +60 came back with 100% donor cells. No Hurler’s cells (Christopher’s bad cells) have crept back in. Also, he can bend his hands now. Dr. Kahler could bend Christopher’s hands the other day, just like a regular child’s. A huge accomplishment. Something so small like bending one’s hands, yet such a step forward for us.

A year ago today I quit work and started maternity leave per drs. orders. (Christopher was born on April 24). I never dreamed where I would be today, one year later. What many people do not know is  throughout my pregnancy I felt like something was “wrong.” I can’t describe it, I just knew. I had dreams of us undergoing chemotherapy. I had dreams when I was pregnant that something was wrong with the baby. I wasn’t a happy, jolly, pregnant lady, I lived with a sense something huge was coming. I come from a long line of “instinct people”, perhaps my instinct was preparing me.

I have had open heart surgery twice, and was a high risk pregnancy. We had more prenatal testing done than one can imagine. Blood work, sonograms, you name the test, we had it done. Nobody in a million years would have thought to check chromosome 4.

 All the testing showed everything was fine, we were looking for cardiac defects with the baby.  It goes to show you the things you fear the most never happen-we were so worried he would have a heart defect. I was always worried I would have to have open heart surgery again. Never again will I be afraid of that,  if I do, I have it done and move on. It won’t be a big deal. I often said I would have open heart surgery ten times over with no anesthesia, I think the pain would be less compared to this experience.

My friend Gina and I were riding in the car on a way to a baby shower,  a week before Christopher was diagnosed. I remember saying to her, I feel there is a genetic defect with him. I contribute it to part mother’s instinct, part nurse’s instinct. I knew throughout the pregnancy, deep in my heart, something was wrong with Christopher. I am actually writing a book/memoir that chronicles this experience.

I have come to the conclusion, and found peace,  that the first few year’s of his life may not be like every other baby. He will have more hurdles, and many more road blocks than regular “baby milestones.” Things will just be harder. When we go home, our journey will be far from over.  Our weekly parade of doctor’s visits will continue for quite some time. Since his immune system was wiped out, we have to start over with his immunizations and get all his vaccinations again.

I will never, ever take for granted any little accomplishment he does. I have truly learned to appreciate every hour, of every day, God has given us. If I am at work, playing with my baby, or just holding hands with Joe, I have learned to give thanks for every second of life. The little every day problems that use to bother me are gone.

Christopher has no muscle tone, and no strength at all right now. (However he does manage to pop his head up from his pack and play and fight the power of sleep). His legs are little sticks.  One day when he does sit up on his own without toppling over, my heart will melt. Last night he took a bath without screaming and actually laughed at the rubber ducky,  I was so excited I called my mom and dad. He still has anxiety thinking we will hurt him when we put him down, but it is slowly getting better.

 When he rode in his “big boy” car seat I thought I would cry. He has to work so hard for every simple goal. I believe this experience has taught me to look at the simplest acts in life, and cherish them as if they were gold.

Wednesday March 31, 2004 Day +69

Counts:  WBC: 7530, ANC: 5720

Clinic went OK today and Christopher got another Glomular Filtration Test to check on his kidneys which was about 3 hours long. His kidneys are not working the way they should, and it could be the result of the overdose of FK506 or all the drugs he is taking. He went for another PUVA treatment for his GVHD and is starting to get a nice tan. His skin is looking better, and his feet are the only thing we are having problems with. The GVHD can still creep back at anytime though. We are down to only 7-8 drugs a day. Yeah!!!

Blood, urine, and throat cultures were taken yesterday. Christopher has bacteria in his throat, urine, and stool. I don’t know if this from the sinus infection or not that has caused  bacteria to travel. I am extremely frustrated because I have been asking for antibiotics for over a week and they would not give them to me. I understand the need of having to rule out a viral infection, but as the days went on he got continually worse. I worry because of bacteria being in his body and him being immunosuppresed. (We all have bacteria in our body normally, there are just strains of bacteria that he has gotten which could case further infections). We are still fighting low grade fevers, and I feel it is only by the grace of god we have not been readmitted. His little body must be fighting so hard to try to stay out of the hospital and fight these infections. According to the doctors he has a LOT of bacteria in his system. Bacteria can lead to fevers, which can lead to more hospitalizations.

I am tired and frustrated at this point. Not only do we have to fight on a daily basis for him to get well, but we have had to leave behind our entire life. Our friends, our home, our jobs, everything we have. We have been living in a chair, and a one bedroom boarding house for months. (Many thanks to Northrop Gruman and Fairfax Hospital OR for being supportive, understanding, and flexible with our jobs- we are so grateful). I wish we could be back in the comfort of our own home, with Christopher in his little Snoopy room, his sisters Hokie and Pokie hanging out (kitties) and his big brother Nick (our lab) running around. (Nick is in temporary foster care with Grandma Karen and I fear there may be a custody battle when it is time for Nick to leave their dog Emma).

Don’t get me wrong, I will go to the ends of the world, and live in a mud hut for years if that would be what it takes for him to get well. Most people have to leave their their homes and relocate when forced with a rare illness.  The days seem to be getting longer rather than shorter. However, we are one of the lucky ones that will one day get to go home. Some of the children we have met during transplant have passed away and won’t go home.

Tuesday March 30, 2004 Day +68

Another long frustrating day. We were not suppose to go into clinic today, but his Cyclosporine level in his blood was low and we had to go in for a repeat blood draw (the cyclosporine level has to be in a therapeutic range to be effective). As soon as we got to clinic, he started throwing up again. Everyone said it was a good thing I had given him 8 hours of fluid last night, he would have been severely dehydrated if I hadn’t. His nose is pouring mucous and the doctors would give him any antibiotics until he had a sinus and chest CT.

We went to get a head CT and insurance didn’t approve it. Three frustrating hours later we got approved for the CT, and sure enough confirmed a sinus infection and we could start him on antibiotics.

We have started him on IV fluids again at night since he is not eating, and so he won’t get dehydrated.

Monday March 29, 2004 Day +67

Counts: WBC: 11,410, ANC: 8,215

Long day. We were in the Oncology clinic for a few hours today getting a Respagam infusion. It is to help protect against RSV, pneumonia etc… Post transplant kids are at risk for infection to common flu bugs, and are often given drugs to help boost the immune system.  We pulled up to the Dermatology clinic and he just started throwing up. He has thrown up three times today and I can’t keep anything down him. Christopher still has a runny nose, and low grade fever. I think he may have a sinus infection, that is dripping down his throat and causing him to get sick. I had a bag of IV fluid solution left over and started him on it, I didn’t want him to get dehydrated. He seemed to turn around a little and had more energy after about two hours of fluid.

Sunday March 28, 2004 Day +66

A little bit of a stressful weekend. I believe Christopher may be teething, and has run a low grade fever of between 99.5-100.0 all weekend. If he hits 100.5 we have to be readmitted. Joe and I were so nervous about having to be readmitted yesterday, we couldn’t even talk. However, his fever starting coming down last night and we could breath a little easier.

He has upper body strength, but has very little lower body strength. He still can’t sit and has a hard time supporting himself. We were able to get him in his walker and his Johnny Jumper for a few hours (he still cries and thinks he is going to have a procedure whenever you put him down). Hopefully over time we can do this more and strengthen his legs, he has no muscle tone. It worries me a little, but I know it will come back with time.

One of the advantages of going through teething when you have a transplant is you get the good drugs. We can’t give him Tylenol, because Tylenol will cover up any signs of a fever. We can’t give him Advil because Advil causes bleeding and his platelets are still very low. So Christopher gets oxycodone (that we use very, very sparingly)! He also has a major runny nose, and what I think are all the symptoms of teething. Hopefully, we are still dealing with baby stuff. We tell the doctors we are dealing with a triangle when it comes to Christopher, one side is Hurler’s, one side is Transplant, and the other is pediatrics. It is difficult to separate each side, and figure out what is going on!

We forgot Christopher was growing while he was in the hospital, and Joe went to Toys-R-Us yesterday to get a new car seat. We put him in the car today, his first ride in three months! He looked a little terrified, and held onto the sides the whole time. He cried a little at first, and I think it is just another new thing to get use to. We went to the Inner Harbor, ate outside, and spent about an hour at the harbor. Christopher wore his little face mask, and his Virginia Tech baseball cap, his counts were high enough we were allowed to take him out. It was nice to feel “normal” again, and be a member of the outside world. For a few hours we forgot about hospitals, drugs, all our friends at the hospital so sick. We felt like a regular family for a short time, and made it back in time to give him his 3:00 immunosuppresant drug.

 

Friday March 26, 2004 Day + 64

Counts: WBC: 6640, ANC: 4382

Today was a busy day. Christopher had an enzyme infusion, and Dr. Kahler thinks next week may be the last one. There is no scientific data on when to stop enzyme infusions since the technology is so new, Christopher is the data! We are putting special strips in his diaper that get sent to Minnesota to measure the GAG content (byproducts from cells that does not get broken down). When his GAG levels reach zero, we will than know his body is successfully making enzymes, and no bad byproducts are left.

After the infusion, we went for an appointment at the Oncology clinic, and another infusion. This infusion was to help protect against RSV, Pneumonia etc… He will get another one on Monday. Because he is acting like a monkey, and will eat nothing but bananas, he is extremely constipated and crying. It is an icky thing, and he had to get an enema. However, his  body got flowing in the opposite direction, and he puked all over me. Finally, later today, his body started flowing the way it should!

The best news of all – according to his 60 day bone marrow aspirate he is still 100% donor cells! None of his bad cells have snuck back in and taken over!!

Thursday March 25, 2004 Day + 63

Counts: WBC: 6250, ANC: 5125 (from Day +62, Wed. March 24)

I deeply apologize for taking so long to update. To be quite honest I have been very down, a lot of the reality of everything that has happened to us has started sinking in, more like crashing down. I feel we often teeter between two worlds, and at any second we could crash again. I feel I am walking on a balance beam, and could fall at any time, and I am not coordinated at all (I live with black and blue marks from falling into stuff and crashing all the time). We could have the floor pulled out from under us and everything turned upside down again. A lot of our friends we transplanted with are back in the hospital, and I am very anxious hoping we don’t have to return. HOWEVER the good news is the stuff we are dealing with these days is BABY stuff and I think a lot of “rehabilitation/ post hospital” issues.

Clinic went good yesterday (Wednesday). He got his medicine for adenovirus, and a PUVA treatment. He was fussy a lot, and we weren’t sure if he had an ear infection or sinus infection. The drs. are holding off on putting him on an antibiotic, and for now we are using Sudafed and saline drops in his nose. His nose is a little runny, but no infection.

At the beginning of the week he was crying a lot and not sleeping (every time Grandma Karen comes up he decides it is time to start crying). We couldn’t change a diaper, his clothes or lay him down on the bed without him crying. He starts screaming and thinks you are going to hurt him. When we were in clinic, people would come in and he would look at them and cry. I think it will take a while for him to get his trust back in everything from people, to common every day activities like just lying down. On  Tuesday we got him to lay on the bed and take a small nap. We were trying to show him the bed was a “safe” place and OK for him to be there and he wouldn’t be hurt. He held one of Grandma Karen’s hands, and one of my hands and finally fell asleep. Christopher seems to have gotten over the “big bad bed” a little today. Joe and I had a nice dinner on the dining room table (ironing board) while he drank his bottle on the bed and tossed around a little.

Joe and I think he may be in a little pain and are starting to give him a little pain medication when he needs it. I think it is a combination of teething/ears/transplant stuff. His joints seem achy and he still has a hard time trying to sit. We hold him a lot and that seems to be the most comfortable position for him.

Christopher’s still eating almost only bananas and we are scared he may turn into a monkey. We feel like Bubba Gump from Forest Gump. “Banana yogurt, Banana with Apples, Banana Dessert, etc…” We have taken this from Bubba’s line to Forest, “Shrimp Cocktail, Shrimp Kabobs….”

Joe feels Christopher is beginning to look like Don King. He has random pieces of hair all over his head. Every time he wakes up from a nap, there is a new piece of hair scattered randomly somewhere. He is starting to get little blond peach fuzz.

The Thank You Note:

As many of my friends know, I am a BIG thank you note person. (However, I am currently about a month and a half behind). I always want to express my deep gratitude and appreciation, I am so thankful for everything. The irony of my “thank you note journey” is I will never be able to thank Christopher’s donor. In Solid Organ transplantation, the recipient family can contact the donor family 1 year after transplantation. However, in Umbilical Cord Transplantation, the gift is totally anonymous and we will never be able to thank our donor. The only thing we know about our donor is: the cord was 42 months old and came from a female. This means their is a three and a half year old little girl out there whose parents unselfishly made the decision to donate. In my dreams I envision a little girl with brown hair and pigtails playing in a playground, and Christopher toddling around playing with her. I watch them from a distance and see them smile. Perhaps some mother out their will feel joy one day and not know why. I hope she knows she saved my baby’s life, and feels the joy  I feel when I see them together in my dreams. I don’t know why I have this image in my head, but I do, and it brings me comfort and helps me to thank my beautiful donor family.

One Final Thought:

We have been so blessed with over 10, 700 hits since October on this site. Their are baby angels everywhere and I ask for you to pray for them and their families. Two baby angels in particular I think of every day are Mighty Max and Andrew. Mighty Max is a Hurler’s Angel who went to heaven last fall. His family has been so supportive and kind to us. They have brought us comfort in our darkest hours through their pain. We are so thankful to Mighty Max’s entire family, and ask you to say a prayer for their family  and angel Max. Although we have never met Max’s family in person, they have made their presence a constant in our life.

The other angel is Andrew Fimbel. Andrew become an angel two years ago after battling the genetic disease Spinal Muscular Atrophy. His mama and daddy are some of our best friends (to see Andrew’s site please click on “How you can help” on this website). Today the singing group “Dixie Chicks” added to their website a section where people can send donations to help fund research for SMA. I am so proud and honored to be Gina and John’s friend who helped make this all possible.

I am the type of person who has very vivid dreams and dreams almost every night. In my dreams I see Andrew and Max together playing in heaven, free from pain and hospitals. So many children everywhere are going through so much pain, from tons of diseases, that rob their childhoods and their lives. Please remember them in your prayers tonight.

Thank you to all our readers, for making such a difference in so many lives.

Monday March 22, 2004 Day +60

Counts: WBC: 7040, ANC: 4787

Clinic went good today, and his counts have come up. The doctors told me there is usually a “60 day slump” where the counts will suddenly drop drastically. Luckily his counts are starting to come up. His blood pressure is slowly starting to come down, and we got to stop one of his blood pressure meds (but he is still taking three blood pressure meds). His GVHD still flares on his legs and feet, and we keep him lathered up with steroid cream, and increased his cyclosporine (anti rejection drug).

Christopher had a bone marrow aspirate and did great. They sedated him, and put a needle into his iliac crest bone (hip bone) and drew out bone marrow. The doctors are looking to make sure he still has all donor cells, and none of his old cells have come back. They feel with the amount of GVHD he is still having, his donor cells should still be close to 100%, we will get the results back in a week. He will have another bone marrow aspirate at 90 days, 180 days, 1 year and 2 years post transplant. After his bone marrow aspirate, he had his PUVA treatment. He has to wear his sunglasses for the rest of the day to protect his eyes. He is quite a site in his Virginia Tech cap, shades, and face mask!

Christopher’s Central line looks very green and icky around the insertion site into the chest.  There is also fresh blood around the site.He will need another line for at least another 6 months. I’m not sure how much longer this one will hold out.

He had a bad day yesterday with his stomach, I think food still hurts him, and we still continuously feed him all day in very small amounts. Today he did much better, and he hasn’t thrown up in 4 days! I could actually get food and milk down him, and he kept it down. He is all boy and has started burping loudly, just like a man! I heard burping last week and blamed it on poor Joe when it was baby Christopher!

Saturday March 20, 2004 Day  +58

Counts: WBC: 4260, ANC: 2000 (Counts from Friday March 19-Day 57)

Christopher’s counts dropped A LOT yesterday. The doctors said this is normal, and their blood counts are usually a roller coaster for a long time. Lot of ups and downs. However, his counts had been high for a very long time. Even though the doctors said this is normal – it still makes me nervous. His skin comes and go’s with the GVHD flares, and for now we don’t have to start Pentostatin (the new chemo agent).

Although Christopher is eating (about 4-5 ounces) a day, and drinking, Joe and I have to start over as if he was a brand new baby. He was choking and gagging on all his food, so we went back to stage 1 foods, or water down his baby food. This seems to help and he has stopped choking. He has very little muscle strength, and can’t sit up without toppling over (but he can squeeze my nose with the strength of a giant and draw tears to my eyes, he thinks this is so funny)! It makes me so sad to see how weak he is, and to think of all the things other kids his age are doing. I know he is strong, and it will just take a little time to catch up. Hopefully, this transplant will give us all the time in the world.

I think his skin still hurts, as soon as we go to change his diaper or clothes, he starts crying. The air must hurt when it hits his sensitive skin.

We have a lot of rehabilitation to do. He still doesn’t trust people, and will scream at them before he starts to smile. We know it will take a while for him to overcome this. His body went to hell and back, and now is the time we have to continue to bring him back. These kids are literally taken all the way to  the edge, and brought back. They quickly go to the edge with the chemo. The way back I believe will take months for him. For us it may take years. Now that we are out of the hospital I’m starting to “come down” off my survival mode high I was on for months. Survival mode is just where you do what you have to do.

When I get a second to step back and reflect, the tragedy of what his body what through hits me. I feel sick now every day we go to clinic for fear something will go wrong. But. despite this, Joe and I still have the blessings of so many people. We are still receiving donations to help with medicines and medical bills. Strangers send us meals every week, and our mailbox still overflows with sentiments of love and support. Despite our rebuilding of Christopher, and the rebuilding of our broken hearts, the world keeps reminding us we have not been forgotten. We are truly blessed.

 

Thursday March 18, 2004 Day + 56

Counts: WBC: 8930, ANC: 7680 (Counts from Wednesday March 17-Day 55)

Clinic was long yesterday and we ended up not having a PUVA treatment or enzyme therapy done. Christopher’s urine came back positive for adenovirus again, and we had to spend the day treating him for that. Adenovirus is just the common cold virus, all of us may carry it around and not know it. In an immunosupressed person like Christopher, it can be very dangerous. We have to give him a special medication to protect his kidneys, the drug to fight the virus, and than the kidney protection medicine again. We also started him on oral Immunogloblulin to help boost his immune system, so once again two new drugs added onto our pile (but luckily it was just for about 18 hours I was giving more meds).

His GVHD on his skin still “flares” every now and than. I was worried sick yesterday because he looked very inflamed (his skin can begin to look like hives, red and rashy). The doctors said if it gets any worse we may have to start him on a chemo agent called Pentostatin. We would be able to give it to him on an outpatient basis, but it has to be 3 days in a row. So if we went in tomorrow (Friday) and it looked bad, and they decided to start him on it, we would have to be readmitted for the weekend. If we were to decide to start it during the week, we could just come in to clinic to have it done. The doctors and Physician’s Assistant decided to hold off till Friday to make decisions on if we should start the Pentostatin. I think the flares will be something we will have to carefully watch. Some patients after chemo can have problems with GVHD for months after transplant. The Pentostatin would kill the lymphocytes that are causing the GVHD.

Christopher’s been sleeping like a baby! He slept all night, and fell asleep in his high chair when I was trying to feed him. The Children’s Center is nice, and helps create a home like atmosphere. The three of us ate in the kitchen together tonight, and it was so wonderful! We put Christopher in the death trap high chair with a phone book for him to sit on. He just laughed hysterically at Joe doing the dishes in the sink, and pulling paper towels out of the machine. The three of us ate together at a table again, what a cherished moment. I still just hold my breath every day.

**I learned something interesting at Clinic yesterday. They have Sesame Street on for the kids. Elmo has his own desktop and e-mail address. I think Elmo may know more about computers than I do!

Tuesday March 16, 2004 Day +54

Counts: WBC: 8800  ANC: 6776 (Counts from Monday March 15 – Day 53)

Sorry it’s taken a little while to update. It’s just me and Christopher this week, so I’m staying pretty busy. Also, we don’t have a wireless connection, I have to use the phone line and I’m not internet literate, it takes me a while to figure out how to connect.

Anyway, the 1st day at clinic on Monday went good. We have to be there at 9 am for blood draws and cyclosporine level. They do vitals (his blood pressure is starting to come down nicely) and gets a check up. His skin is still red and a little “flared” looking so we decided not to go down on the steroids any. We sat and talked with Nancy the Physician’s Assistant a long time who told us what to expect. I am soooo terrified we will have to be readmitted. His skin looks a little more angry today and I’m worried about the GVHD. The doctors had told us if the GVHD gets bad another treatment would be a chemotherapy drug inpatient for at least 3 days. I REALLY want to avoid this. I get so nervous about him getting sick I take his temp every few hours, and I have him loaded up with steroid cream. Please keep praying his GVHD stops acting up!

After his visit, we went to get a PUVA treatment and he got a little sun tan.

Even though today is our day off, I’ve been like a crazy woman all day. His meds are given every so many hours, and I have a check list I go by hour-by-hour. I have to hook him up to IV’s at night, and set my alarm for 3 am to disconnect him and give him more medications (of course the ones due at 3 am are the one’s out in the fridge)!  He had been vomiting alot, so I spaced out his medications and this seems to have helped. I think everything in his stomach is too much sometimes. The kitchen has those old death trap high chairs, I’ve been able to put him in it to get him to eat. He will take only a few ounces of baby food at a time, and I’ve had to start watering it down. He was gagging even on the softest food, and making it thinner seems to be able to help him digest better. He’s eaten like 5 ounces of food today and taken a few bottles. He also slept last night. Two huge goals!!!!! I’ve also gotten some beautiful smiles the past 2 days!

There are so many more children in the hospital who are so sick. We get to know these families and it breaks my heart when I get to step back and reflect on all these children and their families. Please remember them in your prayers at night. They are so innocent and so beautiful, and such strong fighters.

We go to clinic tomorrow, get an enzyme therapy, and a PUVA treatment.

Sunday March 14, 2004 Day + 52

Counts: WBC: 10,060  ANC: 9,054

Christopher was discharged to the Children’s Center House! Happy Birthday Grandma Karen, what a wonderful gift!

Yes, that is right, the “D” word finally came true! I figured up since the beginning of January we have been inpatient for a total of 70 days. 8 days for a line infection, a few days off, 8 days of chemo, 2 day zeros, and 52 post transplant days. It’s been a long time!

The Home Health Nurse came out and showed us how to hook up his IV infusions for the next few nights and how to work the pump. We have managed to cram everything into a room big enough to fit 2 beds, a dresser, and a pack & play. We also have a bathroom and an ironing board. The ironing board doubles great as a dining room table! We brought in a TV from home and Joe has rabbit ears on it trying to get reception. So far, we have lots of static and sound.

We tried to give Christopher his first “real bath” since January when he came home (we just used these cloth bath things you heat in the microwave to clean him in the hospital). He screamed and went crazy. Whenever he gets naked now, he thinks he is getting a procedure done and automatically starts screaming. I think it will take a while to readjust him to normal everyday activities..

This is the first time since the beginning of January the 3 of us have been together in the same room and can go to sleep as a family. This will only be the 3rd time since January  Joe and I have slept in the same bed together. Talk about a test to your marriage! I think (I know) our marriage will never be the same, just like we will never be the same. We are not the same Paige and Joe .We have been through an experience and a pain your worst nightmares can never prepare you for. This experience is my worst nightmare. But, we came through it, and we are stronger and better than ever. I pray Christopher will continue to heal, I still hold my breath everyday.

I can’t believe we have gone to an outpatient status. It is such a surreal dream, and so wonderful to be out of the hospital. We want to thank all the wonderful doctors and nurses who helped us along our journey. We will start our outpatient journey tomorrow. Tonight we have to figure out our zillions of medications and start drawing up our own medications. Like I said yesterday, I have tons of e-mails and catching up I want to do, and hope to be able to get to it this week.

Christopher is now hanging out on the bed, laying between pillows and laughing like a fool at his baby wipes in his hands.

 

Saturday March 13, 2004 Day +51

Counts: WBC: 9733, ANC: 8468

Well, the “D” word (Discharge) got pushed back till tomorrow, Sunday. Christopher’s cyclosporine level came back too high, and they are going to do a little bit of adjusting on the dose. He absorbs medicine very quickly. But, if everything is OK, we will be off to the Children’s Center tomorrow! I’m so nervous and so excited. I feel just like a new mom bringing him home all over again. I have that feeling all new parents get when they bring home a new fragile baby. For some reason, the hospitals always forget to give you the instruction manuals on the new baby. This time, boy do we have an instruction manual!! This time Christopher comes home with a zillion meds given at different intervals throughout the day, a central line, a fragile immune system, and a home health nurse! Joe and I made a chart up on what meds to give on what days, and at what times. Some are given once a week, some 4 times a day, but most are given twice a day. We will also be hanging IV saline fluid at night while he sleeps.

We will be coming to the hospital at least 3 times a week for blood draws to measure cyclosporine, and do blood counts. He may still get blood and platelet infusions. He will also continue with PUVA (his sun tanning) three times a week, and get enzymes once a week. We will only be getting enzyme infusions for a few more weeks.

He will also have more bone marrow aspirates done at 60, 90, 180, and 365 days, and 2 years. The doctors warned us it is highly possible we will have more admissions which we are prepared for. Anytime he runs a fever, we are admitted for at least 2 days.

He was in an awesome mood today, he smiled and laughed. He ate and drank his bottles. He gets himself snuggled in his blanket, and plays peek-a-boo with himself. Since the day he was born whenever he has been happy, he has always clasped his little hands together, and held them up high. He loves to hold his hands together, and as I sit here and watch him sleep he’s holding them together as if in a little prayer.

**I have a lot of catching up to do on thank you notes, and updates to this website. Hopefully next week, after we move, I can have some privacy and free time and catch up on things!!! I apologize if you have not heard from us. Please know we appreciate all sentiments of love and support!

Friday March 12, 2004 Day +50

Counts: WBC: 8610, ANC: 6789

The doctors are talking about the “D” word for tomorrow to the Children’s Center House. (Discharge-but Joe and I don’t want to talk about because we are scared to jinx it. Until we sign final discharge papers, we aren’t even packing a bag)! We’re scared he’ll spike a fever or something over night.

Christopher finally slept! They decreased the steroids and I think it helped. He hasn’t been as agitated, and is finally starting to eat baby food again. He’ll only eat a few bites at a time, and he will only eat bananas, but it’s better than nothing!

He hasn’t gotten blood or platelets for about 3 days, and that is a great sign. He was getting blood and/or platelets a few times a week. Blood and platelets are the last things to be made by the bone marrow after transplantation, and this is a sign he is getting even stronger.

Thursday March 11, 2004 Day +49

Counts: WBC: 8,238, ANC: 6,838

Today was a non eventful day. Christopher is still on strike against sleeping, and we can only occasionally get him to go to dream land (this includes morning and night). So Joe and myself have started alternating at night when possible, so one person doesn’t go without sleep for more than 2-3 days in a row. Sometimes my parents come up and can take a night or two to help us out. The result of his CT scan came back from yesterday which confirmed the ear infection. Also, the echo from the other day showed some thickening of the left ventricle of the heart. This is basically from the high blood pressures and his heart working over time. Hopefully this will resolve itself over time.

His skin is clearing up, and looks awesome. All those prayers have certainly helped transform him into a miracle!  When we do go home we will be on a ton of meds to help with immunosuppressan and keep the GVHD away. The doctors have started giving him all his meds by mouth now versus IV. They draw a lot of blood (we still have to stand him on his head to get blood out) to check therapeutic levels of the medications. We have to make sure they are in a certain range and working correctly.

They have decreased his steroids and he has lost a lot of his weight he had put on from fluid retention. He still looks a little “chipmunky” in the cheeks. As our friend Becky put it, “his hair is growing in like a halo”. He is completely bald on top still (but has a few pieces sticking up here and there), and has a ring of hair coming in around his head. He even has a little baby comb over from one random long piece!

I went out today and bought him a pair of baby sunglasses for his PUVA light treatments. He was quite a site yesterday traveling around the hospital with his green face mask on , and his green “Red Baron” goggles. He has to wear goggles or sunglasses to help his eyes with light for the rest of the day after the treatments. Perhaps the glasses will give him a more fashionable look for his PUVA treatments. ?

Wednesday March 10, 2004 Day +48

Counts: WBC: 9,350, ANC: 8,041

I figured up today we have been inpatient straight for about 66 days. We spent 8 days for a central line infection, than had a few days off, had 8 days of chemo, 2 day zero’s and here we are 48 days post transplant. It’s a long time.

Today was a busy day. Christopher had an enzyme infusion, a Glomular Filtration Rate test for his kidneys, and a PUVA light therapy treatment. We also had a CT of the head to check and see if he has a sinus infection in addition to his ear infection.

I just read the most incredible book and it has encouraged me to write my own journey with Christopher. Hopefully I can do that soon and post it. I have had so many amazing experiences, both good and bad, and perhaps I can use this journey to help someone else out there.

Tuesday March 9, 2004 Day +47

Counts: WBC: 9,530, ANC: 7,463

Christopher has gone on strike against sleeping. He’s agitated a lot, and doesn’t sleep in intervals over 2 hours (if he does sleep). The only major test we had today was an echocardiogram. The oncologists are working with nephrology to help get a handle on his blood pressures that are still high. We were taking a look at his heart to make sure everything was fine.

We also figured out he has another ear infection.

Monday March 8, 2004 Day +46

Counts: WBC:6420, ANC:5264

Christopher’s GVHD is beginning to look better, and I am being cautiously optimistic. The redness seems to be resolving some with the addition of cyclosporine, back along with the Cellcept. He also received a light treatment today we will be doing 3 times a week for the GVHD called PUVA light therapy. He takes a special medicine 1 hour before treatment to sensitize his skin , than we go to a different building to get the treatment. We step into a huge circular box, and he gets light therapy (which means I get it too because I’m holding him). I wear special goggles, and he wears little green goggles (like you where for swimming), he looked like the Red Baron. He will gradually increase his time he will be in the box since the biggest side effect is sunburn. He was in the box for 1 minute and 5 seconds today. BUT, the trip over there was exhausting. Mom and I took him by wagon and it took 45 minutes to make a round trip to the other building and back for a one minute treatment.

Until you have traveled by red wagon pulling an IV pole with a million lines attached to a baby, one has not truly experienced all means of transportation. It is quite an adventure. We put Christopher in his wagon with his little green face mask on, an emergency bottle and his tape measure (his new favorite toy, he got a new one tonight for taking all his medicines by mouth). We than had to maneuver the wagon and pole, in and out of elevators, around turns, and down corridors. At least we are down to one pole and two pumps. Joe and I feel this is an accomplishment. There were times when we were up to 3 IV poles, and what seemed like a million pumps delivering meds. As soon as we leave the floor, the pumps will automatically start beeping and making a million sounds. It was quite an adventure and mom and I were sweating by the time we got  back to the room!

We than had to pack up our room AGAIN and move rooms. Something about the HEPA filters being broken in the rooms. Our wonderful pastor, pastor Don came to visit today. Christopher saved his one smile of the day for him and grinned ear to ear at pastor Don.

Sunday March 7, 2004 Day +45

Counts: WBC: 6310, ANC: 5048

Christopher has gone on strike against his crib. He Will not go in it at all, and screams if he goes near it. He will only sleep in his wagon or in the chair with me. (He tends to hog the chair)! He will also only sleep if he is being held. Luckily Grandma Karen has just arrived to rock Christopher for the next few days.

It has been so difficult to separate Hurlers/Pediatrics/Transplant and what is “normal”. We think this is just an age related thing (they say around 10 months babies get clingy) along with agitation from the steroids. Hopefully tomorrow we can start decreasing the steroids, he looks very swollen and his face is very blown up. Also, if we can decrease the steroids, it will help with his pressures that are still high.

I don’t want to jinx anything, but his skin looks like it is improving some. The “red, angry” color of the skin has faded a little, and he doesn’t seem to be getting any worse. His legs and head look better, and we are still praying for the best with our cyclosporine/cellcept immunosuppressant combination.

Saturday March 6, 2004 Day +44

Counts: WBC: 10160, ANC: 8187

Non eventful day. Christopher is a FUSSY man. The high dose steroids in combination with boredom has caused him to be uncomfortable. (High dose steroids can cause people to go loopy).

Friday March 5, 2004 Day +43

Counts: WBC: 7950 ANC: 7394

Finally good news.  Christopher’s official Bone Marrow Aspirate has come back.  He has 100% engraftment with all the cells coming back as the donated stem cells.  No Hurler’s cells were present in his Bone Marrow.  This is great news and with everything else that is happening with the GVHD Paige and I actually were able to smile.  As the doctors like to tease me, he is all girl now…  The donor was female so the test is very simple, they can do a quick DNA test called X-Y Fish that looks for X-Y DNA.  Since he has only X-X DNA it is easy to check for the presence of the new stem cells.

Christopher had a very uneventful day today.  No major tests except a chest x-ray to verify his central line placement.  He slept almost all day, drank and eat every once and a while and than went back to sleep.

His rash is still pretty bad.  The doctors are starting him on cyclosporine tonight and will continue this through the weekend.  Hopefully by Sunday the cyclosporine will be at a therapeutic level and they can remove the steroids.  He looks very puffy today and is retaining fluid.  Unfortunately a side effect of cyclosporine is high blood pressure so they will be watching this closely.  The goal is to see the rash to start and subside on Monday.

On Monday they may start Christopher on PUVA which is a drug that sensitizes the skin.  Then he would go into an ultraviolet room for about a minute.  This procedure helps kill off the overactive lymphocytes in his skin that are causing the rash.

Thursday March 4, 2004 Day +42

Counts: WBC: 10,870, ANC: 9,348

Christopher’s counts are looking good today.  We broke 10,000 for the first time in two month’s.  He seems to be in better spirits.  He drank lots of bottles today and we got several smiles.  His skin still looks pretty awful.  The GVHD is really causing him to itch and be generally uncomfortable.  They are going to try him on some different medications tomorrow to try and get it under control.  The doctors are trying to decide on using either FK506, Cyclosporine, Pentamidine or Ultraviolent Light treatments.  They are consulting the GVHD expert to find out which would be the best approach.

Christopher was taken down for an MRI this afternoon to check his brain for any psychosis from the high levels of FK506.  The preliminary results came back negative.  Any time he has this done he needs to be intubated so that requires a trip to the recovery room and a tube in his thought.  Never a pleasant experience but he got through with flying colors.  He’s a very strong little boy and we are determined to get him out of here soon.

Wednesday March 3, 2004 Day +41

Counts: WBC: 7100, ANC: 6390

We need a miracle

Well, not so good news here at JH. Christopher had a skin biopsy done yesterday. They took about a quarter inch size piece of skin off his back, and put a stitch in it. The biopsy revealed stage 2 Graft vs. Host disease of the skin  (There are 5 stages). His skin is red, prickly and a complete rash all over his body. The doctors will increase his steroids, immunosuppressants and may try new medications. (For a review of GVHD please see “Hurlers and Transplants” page). We are very upset. We’ve been through so much and to have GVHD problems again, leaves us just devastated. I can hardly eat because I feel I’m going to be sick. I’m usually a very positive person, but am just feeling sad and down today. I miss a normal life, I wrote on our “Inspirations & Hope” page about all the things we’ve missed out on. (I promise it will be the only time I will ever be negative).  I know this happens with transplants, but the days are getting long, and we are getting tired.

His chest x-ray came back OK, central line in place (but we still have to stand him on his head to get blood). Abdominal ultrasound came back fine, and we are waiting for an MRI slot.

So, please keep praying for us. I pray and pray all the time. I know God is hearing my prayers, but on days like today, I feel lost and wonder where are you? We have many things to be blessed for he has give us. But, I think I’m just really praying for a miracle. How many more procedures, drugs, and tests can a little 10 month old take?

Please pray for his GVHD to go away, it’s a consequence of transplant, and one that can sometimes be deadly. I know this little boy was a gift from God, and put on this earth to do great things with his life.

Tuesday March 2, 2004 Day +40

Counts : Unable to obtain, could not get blood to draw

Sorry it took a while to get yesterday’s update up. At 3 pm yesterday Joe told me to go take a nap across the street. Well my “nap” lasted 18 hours straight, and I woke up at 9am this morning. Still in my same clothes and everything, I literally passed out for 18 hours and didn’t wake up at all!

Anyway, here’s the latest:

1. Skin rash- Christopher has a skin rash and we are going to biopsy it to make sure it is not GVHD of the skin. He’s also on antibiotics which could be causing the rash, but we have to make sure it is not GVHD.

2. Tummy – We will get an ultrasound of his gallbladder and liver to make sure he hasn’t developed any stones, he threw up a lot yesterday and cries like his stomach hurts.

3.Central line – We can’t draw from it again. We usually have to turn him over, and literally stand him on his head to get blood. (I know this sounds awful, but when you are desperate to avoid a 5th central line trip you will do anything).

4. Head- Still screaming. We have to get a MRI of the head to make sure nothing is going on. He will have to be intubated and put under anesthesia AGAIN.

His blood pressure has come down, which is good. Joe and I are starting to get really sad. Family’s have been transplanted and come and gone all around us. I think all 3 of us are literally climbing at the walls. I just want to get back to living our life. We’ve tried to stay positive and upbeat, but things are wearing on us immensely. I think Christopher has cabin fever too, and that is a huge part of his problem. I have him sleeping in the wagon, and he seems more comfortable in the wagon right now than his crib. Maybe a change of scenery?

So, here we are, waiting for more tests. We get an enzyme infusion tomorrow, and they say maybe we can go home Thursday. We have to pack all our stuff up today and move to another room, so they can terminally clean our room since we have been here so long. So we have to pack up, and move for 2 days. The good news for the day is the drs. feel like he is engrafting (although we will get more test results back this week to confirm for sure).

Monday March 1, 2004 Day +39

Counts: WBC: 4355, ANC: 3397

Very rough 48 hours. Christopher will NOT stop screaming at all. He wants to be held all the time, and has not slept more than 2-3 hours within the past 2 days. So I got 1 hour sleep last night when Dina the nurse walked the halls with him in his wagon. He stops screaming when we take him on a wagon ride. His blood pressure has also increased, and the doctors feel this may be giving him a headache.

Finally this afternoon, I left him in his wagon and rocked him back and forth in it. He finally fell asleep, I think he has developed an aversion to his crib.

Many thanks to Pastor Don, and Mr. Lawrence for taking the time to visit with us! I apologize things were so crazy when you were here and we couldn’t visit longer!

 

Sunday February 29, 2004 Day +38

Counts: WBC: 5090, ANC: 4428

Update by Joe:

Repeat of last night for the most part except this time I was smarter and went to bed early.  I managed to get a whole 1-1/2 hours of sleep before the nightly activities began.  We were up from about 1am to 4am.  I finally got him back to sleep laying on my chest in the crib.  Feel a little more rested today.  I had enough energy to actually do the updates.

His rash is about the same.  The blood cultures are still positive for a staff infection which they are treating with Vancomaycin.  Of course this gives him what is called a “Red mans” reaction (this means we turns completely red. and may be making the rash worse).  They have upped his steroids and he also has a topical cream we are using.

At about 3am I had a revelation and thought that maybe the PAS (IV nutrients) could be making him feel bad.  The nurse told me that PAS has a tendency to make kids nauseas.  Go figure…  So he’s back on anti-nausea medicine around the clock.  Hopefully he will be more comfortable tonight.

No new discharge date yet, it all depends on how quickly they kill the staff bug.  He is off almost all of his IV medicines and taking them by mouth.  His fever has also subsided.  I’m not even going to guess on a discharge date…

Update by Paige:

Many  thanks to Jen and Jude for bringing by the yummy lasagna. I would like to thank all my sorority sisters for filling our tummies the past few weeks, warming our hearts, sneaking us wine, and making us smile. I’d like to give a shout out to Walkup, Lala, Angie and Cassie.

We would also like to thank everyone out there who is praying for us. Our ministers and congregational care representatives, Don, Samantha, Lewis and Nita make the long drive to Hopkins at least twice a week. Your help, support and dedication is overwhelming. To the New Covenant Class, your support, and constant treats help remind us of all the friends that await us when we leave.

 

Saturday February 28, 2004 Day +37

Counts: WBC: 4902, ANC: 4020

Update by Joe:

Christopher had a rough night last night.  He was up until 5am agitated and inconsolable.  I had to hold him almost all night, he just didn’t want to go to sleep.  He was very nauseas and basically and unhappy little dude.  Most of the day was a blur between trying you catch up on sleep and keep him comfortable.  He has an infection in his blood stream and is being treated with antibiotics.  He also has a terrible rash again which they are going to treat with steroids.

Many thanks to Uncle Brian for the offer to come down and visit.  We were supposed to go home today but that has been pushed off.

Update by Paige:

We got to take Christopher out of his room for the first time in two months (of course he got to leave his room during our little trip to the ICU). It was the first time we had been out of his room and together as a family in two months (even if it was just a trip to the lobby and back). We put him in a wagon, padded it with blankets and towels, and off we went for a trip around the lobby. He still has to wear a face mask, and wore his little green face mask, and socks on his hands (he

Friday February 27, 2004 Day +36

Counts: WBC: 3475, ANC: 2572

Christopher’s counts have dropped dramatically. I don’t know if it is because of the ear infection. He spiked a high fever over night, so we can’t go to the Children’s Center tomorrow, and discharge has been put off until at least Monday. He is vomiting after he drinks anything, and is fussy and itching. His skin is peeling off from all the chemo and GVHD and I found him scratching his arms until they were bleeding. I put protective mittens on his arms to keep him from hurting himself.

He’s still getting red blood cells and platelets almost everyday. I think I jinxed myself by preparing for discharge tomorrow!

Thursday February 26, 2004 Day +35

Counts: WBC: 6178, ANC: 4628

Today was a normal “baby day” and not an oncology day. Christopher has an ear infection, finally a normal baby thing, and not a transplant or Hurlers thing! He’s been a fussy man because of his ear infection, and was up most of the night. But, it was like the old fussy, ear infection, Christopher, pre-transplant! He’s been up again at night  from 3-5 am ready to party.

Christopher got blood today and is now taking all his medications orally. He drank 12 oz of bottle and threw up on Joe!

The most wonderful news we received is from his bone marrow aspirate done yesterday. The “initial” preliminary results, showed no Hurlers cells under the microscope!!!! This means the chemo killed the old marrow with the bad Hurlers cells and the new cells are coming in and taking over. We still have to wait for a few more tests to come back, but things are looking positive. The transplant was never a cure but a treatment, and hopefully with success we will save his brain and solid organs. We may still hav eye,  spine, and bone problems down the road (it is the only thing the transplant does not help with), but we can deal with that when and if we ever get to that point! (However x-rays have already shown some skeletal deformities).

His glomular filtration test of the kidneys came back and showed his kidneys are not as healthy as we would like to see. The drs. are not sure if it came from the FK 506 overdose or all the drugs he has been on during transplant. Time will tell  how his kidneys will come back.

Such great new about the initial results from the  bone marrow aspiration. We are soooo blessed and have been touched by so many wonderful angels. We know there is still a long road ahead, and we have a long ways until we get out of the woods, but we are beginning to see a light at the end of the road!

Wednesday February 25, 2004 continued….

Go Johns Hopkins Maintenance team! Christopher’s light box he falls to sleep with broke and 3 maintenance guys came rushing up to fix it. (Literally, they were here in 10 minutes). They found the special little light bulb and made a little boy very happy with his glow worm light box. It put a smile on our face!

Wednesday February 25, 2004 Day + 34

Counts: WBC: 7517 (Normal Range: 6000-17500)

              ANC: 6014 (Normal Range: 1500-8500)

 

Look at those beautiful counts!!!!

 

Christopher’s counts look awesome! We still have a long road ahead of us, but all those prayers are certainly working!! The doctors told us the numbers still may drop some, and we are still on the roller coaster, but we will take them for today. I feel (cautiously) optimistic with these wonderful numbers, we may be heading towards recovery. He hasn’t had any fevers in weeks (I don’t want to jinx myself), and our major issue is still the high blood pressure.

 

We had a big day today:

1)Nuclear medicine did a test to look at Christopher’s kidney function. They injected a special dye, and drew blood every hour to help check his kidneys. Due to the high FK 506 levels, and increased blood pressures, the doctors want to make sure their is no damage to the kidneys.

 

2) Enzyme therapy day, Christopher got another infusion. I believe this is infusion #9 of the enzymes.

 

3) Christopher had a bone marrow aspirate.  They gave him some Versed (like Valium but causes you to forget) and did the aspirate. The physicians assistant stuck a needle into his iliac crest bone and withdrew bone marrow from the middle. The marrow will be sent off and the cells will be looked at to determine what percentage of cells are donor cells. If the cells come back at 80% or more of donor cells, we are on our way to total engraftment! We will get the results back in about a week.

 

We are still trying to get his tummy use to food again. We got 8 ounces of formula down today. The doctors said we may be able to leave the hospital on Saturday! (After 2 months, I’m ready)! We would move to the Children’s Center house across the street (it is like a boarding house for parents with children with chronic/terminal illness). We will than come to clinic at the hospital at least 3 times a week for oncology, and 1 time a week for genetics (so we will still be here).

 

February 25, 2004 is national MPS Awareness Day, please remember all angels with MPS who are fighting for their lives

 

Tuesday February 24, 2004 Day +33, Christopher’s 10 month birthday!!!

Counts: WBC: 6924, ANC: 5470

Christopher had a much better day today back in his own room. He has been evaluated by neurology 3 times in the past 2 days because we weren’t sure if he was exhibiting symptoms yesterday of seizure activity. The seizure activity would have been caused by the high FK 506 level (which has now returned back to a normal level, but we are discontinuing it). Neurology ruled out seizures, he started acting normal again Yesterday he was exhibiting very odd neurological symptoms. We thought we were going to have to go to the MRI to see possible changes in the brain.

We are trying to slowly take him off of medications, and have been able to put his pain medicine,  Ativan,  anti -itch, and ant-nausea medicine on an as needed basis. His current meds are: Cellcept  and steroids (for immunosuppressan), Norvasc, Clonidine, and Lasix for his blood pressures. He is also on medicine for his gallbladder and a high bilirubin content. He is still also on TPN for nutrition.

Grandma Karen is up here helping out, and is helping Christopher to start eating again. In many ways we have to “start over” like when he was a baby. Grandma gave him about 1 ounce of formula at a time, would wait about an hour, than try some more formula. It has been about 6 weeks since his tummy has seen food, so we have to SLOWLY get him use to juices, formula and food again. He would only take about a few teaspoons of baby food today. He often exhibits symptoms of a painful tummy after eating or drinking. (I think it is just getting use to things again). Often after chemotherapy patients taste buds change and they will not eat or drink the same things they did pre-transplant. Food and drink often tastes metallically and dull. We are experimenting with different foods and drinks to find something he likes.

Christopher has a little Graft vs. Host on his skin, but we are hoping his new immunosuppressant, Cellcept will help with this. Dermatology came down and confirmed they think it is GVHD. I think we have officially been seen by every specialty in the hospital!

We did get some smiles today, especially to Elton John songs, (he prefers the older songs like Crocodile Rock). It is the most beautiful smile in the world!

 

Monday February 23, 2004 Day +32

Counts: WBC: 4936, ANC: 2517 Wonderful Counts!

Long day – I am very tired and will write more tomorrow. We are back in our room, and transferred out of PICU late today. They decided not to do the bone marrow aspirate due to Christopher’s  pressures still being elevated.

Sunday February 22, 2004 Day +31

Counts: WBC: 2814, ANC: lab error-didn’t get

We are still in PICU. He is more stable and looking better, but the oncology floor doesn’t want to take him back yet. They doubled his Clonidine patch (blood pressure med), and he is still on Norvasc. We will go to the OR tomorrow for a bone marrow aspirate. They will sedate him, and put a needle in his iliac crest bone (hip bone). The doctors will draw out bone marrow and examine it under a microscope. They will look for the amount of donor cells vs. Christopher’s old donor cells. If 80% or more of the cells turn out to be the donor cells, it means he is on his way to engrafting! It will take about a week to get the results of the bone marrow aspirate.

Our central line is starting to act up again! Keep your fingers crossed it will hold out. If we have to go back to the OR for a 5th time for this central line I will seriously pass out.

Saturday February 21, 2004 Day + 30

Counts:  WBC: 3640, ANC:  2360

Great count day.  Look at those beautiful numbers.  Unfortunately he is still in ICU.  His blood pressures were all over the place today.  Finally tonight they got them down to 110/50.  They have started a new drip and gave him a blood pressure patch.  It’s just like a nicotine patch except with blood pressure medication.  His respiratory  rate was a little erratic today so they did some x-rays.  Nothing of substance was found. His FK 506 level is at 22.  Better, but still not down to 10 which is the maximum it should be.

Hopefully if all goes well tonight he will be back in Oncology tomorrow.  Who knows for certain though…

His overall spirits are good.  He drank from his bottle again today and was flirting with the nurses.  He’s got girl friends on PICU now as well as PCRU and Oncology.  He is such a flirt.  We know he is feeling better when he’s flirting.

Friday February 20, 2004 Day + 29

Counts: WBC: 1900, ANC: 1641

Not too much news to report. We are still in the ICU and waiting for his pressures to come down. When he was admitted his blood pressure was 180/110 (an infant should be 90/60). Christopher’s pressures are now down to 120/70. His blood counts from an Oncology standpoint look good. His FK 506 level has come down to 29, and hopefully it will come down more by tomorrow. I’m trying not to be upset at the error that was made, and just focus all my energy on being positive and getting Christopher well and home.  I’ve started my own personal goals today and started “rehabbing” him down in the ICU. I’m working his legs, getting him to sit in my lap, and convinced them to let me give him a bottle so he can get back to solids.  Although I am completely devastated this happened and we ended up in ICU, (trust me, their are NO feelings to describe this, when you have been fighting for your sons life for 10 months and someone’s error could have killed him) I figure the time will come to deal with the situation that caused this. Right now I must focus on my little baby Sinky (his nickname).

Thursday February 19, 2004 Day + 28

Counts: WBC: 2680, ANC: 1141

We are still in the ICU. Christopher’s pressures are coming down very slowly, and we will probably be there another day or so. We ended up their due to a HUGE error that was made, that was life threatening.

Basically his FK506 levels are much higher than they should be.  This could potentially cause seizures and other problems.  The normal therapeutic range for FK506 is between 5 and 10.  Christopher’s level was at 100.  They have temporarily discontinued the infusions until his levels come down.  At 6pm tonight his levels are at 40.  Much higher than they should be but slowly coming down.  This is a contributing factor to his blood pressure problems.  He is also being weaned off the blood pressure medication and so far his blood pressure is staying constant at a much lower rate.

Since the symptoms of GVHD seem to have subsided the doctors have lowered the steroids back down to the original dose.  This should also help with the blood pressure problems.

We should land back in Pediatric Oncology some time tomorrow.  They have to be sure that his blood pressure is stable without the medications and that his FK506 levels are normal.

Wednesday February 18, 2004 continued……

It’s off to the ICU we go!!!!!

7 pm:

Christopher was admitted to the ICU about 5 pm. (Parents get kicked out during shift change so I am able to write this). His blood pressure was too high all day, and no meds would get it down. Also one of the medications he is taking came back at a very dangerous high level. The oncology doctors had to call the lab staff back into the hospital to rerun some tests. So, for now our home is PICU (Pediatric Intensive Care Unit), until we can get his blood pressure down and the medication levels sorted out. Joe had just gotten back to Virginia when the doctors came in and told we what was going on and he would have to be transferred. Joe will either come back late tonight or very early tomorrow morning. When I got the word Christopher was going to have to go to the ICU we happened to have congregational representatives from our church that held my hand and helped me down to ICU (Thank you Nita and Lewis, you were  placed to be by my side at a perfect time).

Wednesday February 18, 2004 Day + 27

Counts: WBC: 2378, ANC: 1641

Christopher’s counts almost doubled overnight! He did it all by himself, with no Growth Colony Stimulating Factor to help with the process. (I’m so proud)!

We are having a better day since Monday. His steroid psychosis on Monday was AWFUL!!! Trying to have to restrain a 10 month old from hurting himself is not fun. But, he is getting Ativan, and has been resting more comfortably. We’ve even lowered the doses of Ativan and he is still comfortable. His rash has faded, and one of the theories is he could have been allergic to cyclosporine. Christopher is on a new immunosuppressant called FK 506, and seems to be doing better. We also borrowed a new type of central line dressing from out neighbors and he has stopped ripping his dressing off. He was ripping his central line dressing off twice a day because it hurt so bad! Monday when he was in his “psychosis” state he was ripping at his skin and causing holes and bleeding!

We will be getting an ultrasound of the liver and gallbladder today because his bilirubin concentration is high. Also he will receive his enzyme infusion this afternoon.

We have had the wound care team coming to see Christopher every day. He has developed some open wounds from the diarrhea from his GVHD. They are giving us guidance and prescribing creams on how to help the wounds.

***The most concerning factor for today is his blood pressure is VERY HIGH. Although he is on a lot of blood pressure medicine it is still very elevated and very concerning. This is because of all the steroids, but it is something we are having to keep a very close eye on. High Blood pressure can be dangerous. We’ve increased his blood pressure medicine.

So, for this second in time-we are OK. We’ve learned to truly cherish every hour!!!!

Tuesday February 17, 2004 Day +26

Counts:  WBC:  1240, ANC: 893

Off to a good start.  Hopefully I’m not jinxing myself by saying this.  His counts are up, and his liver functions are back to normal.  Not much diarrhea over night or this morning.  His rash has subsided and he’s not as itchy.  His blood pressure has come down and so has his heart rate.  Hopefully signs that we are getting the GVHD under control.

It was determined late last night that Christopher is having a side effect from the steroids called steroid psychosis.  As our geneticist says, keep all sharp objects away from our little man…..  He was completely out of control and inconsolable yesterday, probably from the increased steroid dose. They upped his dose of Ativan and changed from Benadryl to Atirax. Atirax is a different type of anti-itch and anti-rash medication.  They also increased his dose of Narcan (helps with itching).  Seems like we have them all at the right levels now and he is much more comfortable.

He’s resting comfortably at the moment.  Mom and Dad are going to relax today and hopefully get some rest.

Monday February 16, 2003 Day + 25

Counts: WBC: 1009, ANC: 807

Bad Day:

Pain, itching, screaming, pain, itching, screaming etc……

Sunday February 15, 2003 Day +24

Counts: WBC: 1680, ANC: 1243

Unfortunately, we just found out Christopher has GVHD in his Gastrointestinal tract. This means the umbilical cord cells (the new cells) are attacking his GI tract causing the vomiting, diarrhea, and upset stomach. There are 4 levels of GVHD, and we are at level 1 (mild). Even though we are at level 1, this is not a good thing. They will put him on a new combination of steroids, anti-rejection drugs, and blood pressure medications. The drs. are hoping by mid week the GVHD will start to resolve itself some. We will be able to tell by his GI symptoms. Another huge dip in our roller coaster ride.

His bottom (and little boy parts) are incredibly broken down, and I have requested a Wound Nurse to come tomorrow to help provide some guidance in healing. He still had adenovirus and is getting the antiviral medication for that.

I’m very upset. I’m mentally tired, and my heart just hurts. I just want to be a normal family again, and it hurts seeing my baby sick and in pain all the time. My wonderful husband is now “taking over” because I feel I just am in too much pain to even talk sometimes.  Please keep Christopher in your prayers for his GVHD to resolve quickly and safely.

Saturday February 14, 2004 Day +23

Counts: WBC: 970, ANC: 776

Christopher’s counts have dropped drastically since yesterday.  The doctors are not terribly concerned since this is what they expected once he came off the GSCF.

Since Christopher has been having a lot of diarrhea over the last week the Doctor’s decided to have a procedure called a Sigmoidoscopy done this morning.  This procedure looks at Christopher’s GI tract for any potential problems.  In particular they are looking for GVHD or adenovirus.  The preliminary visual assessment is that he has GVHD.  The lining of his tract was somewhat swollen but there were no visual sores or lacerations.  This would have been caused by adenovirus.

To treat GVHD they are going to start him up on some additional steroids, put him back on Cyclosporin by IV only and take him off of food.  The food and drink may also be irritating his stomach since his belly is not use to digesting food.

Don’t think we are going home on Monday at this point.  They want to keep him admitted until all his levels and general health stabilizes.

Friday February 13, 2004 Day +22

Counts: WBC: 2150, ANC: 1398

Even though our numbers look good, we are taking a downward dip on our rollercoaster ride. Christopher has been having a lot of bowel movements, yesterday he was having “blow outs” like every 2-3 hours.  He also was having intermittent vomiting between the last two days. Today we found blood in his stool, and his liver enzymes have elevated. The drs. are worried he may have developed something called Graft vs. Host Disease ( GVHD) in his Gastrointestinal tract.

In GVHD, the body’s new cells (the graft) start attacking the host (the body). If this is left untreated it can be fatal. In children with hematology disorders like cancer, the drs. hope to see a little GVHD. (It means the good cells are attacking the bad cells). In someone like Christopher who never had a cancer, and we are giving him something he never had (the enzyme, you really don’t want to see a big flare up at all. It is treated by adjusting steroids, cyclosporine, and other drugs. The way we will determine if it really truly is GVHD is Christopher will have a rectal biopsy. We are waiting for the GI doctors to come up and do the biopsy, however before they do the biopsy, he will have to have a platelet infusion (so it may end up being tomorrow). Depending on how the test results come back, we may have to go to the GI lab on Monday to have a lower GI series of tests done. If the results come back positive, we will know for sure he has GVHD and can make the appropriate medication adjustments. If the biopsy comes back negative, we will have to go to the GI lab to have the lower GI series done. (This is because GVHD can be scattered along the GI tract and may not be seen with just the rectal biopsy).

We had taken him off his pain pump (thinking we would be going home soon), but have had to put him back on it because he is in a lot of pain today. He’s sleeping, so that is the best thing for him now.

Thursday, February 12, 2004 Day +21

Counts: WBC: 1400, ANC: 1148

As you can tell by Christopher’s numbers, they have decreased by half today. The doctors stopped the GCSF last night, and expected this to happen. Like I mentioned yesterday, the GSCF, “kick starts” the system to start making cells. When the ANC is over 2000, they stop it, and expect the body to start multiplying on its own. They tell us we may be able to move to the boarding house (Children’s Center House) by beginning of next week (possibly Sunday)! I can’t believe it. We have been in the hospital so long, and I am officially beginning to climb the walls and go nutty. Even though we will have just one room, with two beds, at least we can be somewhat together again as a family. I think one of the hardest parts of being in the hospital is the lack of privacy. At least we have a private room because we are a transplant family, but there is still a parade of doctors, specialists, etc… in and out all day.

I’m so excited and so nervous about bringing him home. I feel like a new mom! (But with a baby with a central line, rare disease, and post transplant). My mom and I are going to go out tomorrow and get supplies for the Children’s Center House where we will be staying (portable crib, a good thermometer etc…). The reason we can’t go home to VA is we have to be within 20 minutes of the hospital in case of a fever.  Also, we will be coming to outpatient clinic 3 days a week for blood draws,  exams, and platelets, or anything else that is needed. The drs. told us to expect more admissions. If anything at all looks abnormal on his clinic visits he will automatically be admitted.

Christopher still has adenovirus in his urine and stool (like a cold virus, but can be harmful because he has no immune system), so we will still treat him with super powerful drugs. He’s being seen everyday by physical and occupational therapy. His joints are VERY stiff and sometimes his arms and legs are like boards.

Shout out to:

Grandma Karen came up today, and as usual, grandma saved the day! I couldn’t get Christopher to drink from a bottle, and grandma brought up some baby fruit juice. Sure enough he drank from the bottle! I guess she has the magical touch. I like to call it Grandma “Boot camp”, whenever I can’t get something to go right, up pops magical grandma and voila!

Wednesday February 11, 2004 Day  +20

Counts: WBC: 2653, ANC: 2069

Christopher’s counts look great! Tomorrow we are going to stop his GCSF (Growth Colony Stimulating Factor). This is helping his cells to rapidly grow fast, and get them “kick started”. After this stops his counts may drop in half as his body attempts to take over on its own, to start multiplying the cells. He still has bad mucositis in his GI tract. We were hoping to wean him off his PCA pain pump today, but he has a lot of pain with bowel movements and screams in pain. He could still have ulcers in his lower GI tract we are unaware of that is causing pain.

Enzyme infusion went good today, and we got 2 ounces of baby food down! Christopher’s a little anemic, so we are waiting on a unit of Red Blood Cells.

I had to go into work for four hours today, and it was actually a wonderful time to “get out.”  I loved seeing my friends, and it helped remind me of my normal life. After being inpatient in the hospital for almost two months, (and we were outpatient for about 6 weeks before that) Joe and I are starting to get claustrophobic and climb the walls. It really helped give me hope, and remind me, there is a whole other life out there waiting for us that hopefully soon we will have again!

We want to thank people for the continual cards, e-mails and packages you continue to send. They mean so much and help keep our tummies full and hearts warm. Thank you New Covenant Class for your continual round of goodies, and thanks Angie and Bubba for your awesome Valentine’s package!

Tuesday February 10, 2004 Day +19

Counts:  WBC: 1920, ANC: 1651

Christopher had a good day and played a lot.  He ate some baby food but got sick late this afternoon and threw most of it up.  He seems like he is really getting back to normal.  Towards the end of the day he seemed to be getting very agitated.  Not quite sure why.  It might be because of the slow removal of the pain medication.  He might not be ready for this yet.  He seemed uncomfortable and was very fussy as the night progressed.  He slept very little today and we think he was very over tired.

Tomorrow he gets his weekly enzyme infusion.  This typically is uneventful and he always feels better afterwards.  He is also going to get his urine tested again for the adenovirus.  Keep your fingers crossed for a negative result.  The sooner he gets rid of this the faster we can get out of the hospital.

Occupational therapy is going to come by and work with Christopher.  We are hoping to get him developmentally back to normal.  He seems to be doing some things well but other things he is a little behind.  He is not rolling over as much and doesn’t like to sit up on his own.  He is eating but not taking a bottle.  We are going to make an attempt at giving him Cyclosporin by mouth tomorrow (Anti-rejection medication).  The sooner we can transfer this medication to him by mouth the better.  We have to have him on all oral medications before we are discharged.

Christopher pulled off his bandage twice today over his central line. The bandage is really irritating his skin.  He also has lots of buildup around his wound which seems to be getting worse.  They took a culture of it to verify that it was not infected.

Paige and I continue to be challenged by the day to day care here at Hopkins.  Christopher can not speak for himself and we have to advocate for him 24×7.  The Doctor’s and Nurses here work wonders but also have lots of patients.  We have to make sure he always gets his medications and that we follow up regularly on symptoms, reactions, etc..  I think Paige and I are very ready to go home.  I find that my patience is wearing thin and found myself yelling at the phone company customer service representative today.  They definitely deserved it but this typically is not my style.  I think Paige and I are going to sleep for a month once we get home.

Thanks Becky for dinner.  Great job on the meat loaf.

Monday February 9, 2004 Day + 18

Counts: WBC:2330, ANC: 1678

His counts dropped a little today, but everything is still fine. The drs. said his counts will see-saw for a while, but they are still pretty good for Day +18! He got another platelet infusion today, his platelet count continues to stay low.

We had our usual day of occupational therapy, physical therapy, genetics, oncology etc… Occupational therapy has decided to put a splint on his left foot because of the way it is shaped (not an oncology thing, just a Christopher thing). So tomorrow we will  start with putting his foot in a splint at night to sleep. He crawled backwards a little today, and Physical Therapy did lots of stretching exercises with his muscles. His muscles are very stiff, but we get him up and in his saucer and mat at least twice a day each and this seems to be helping.

Part of Christopher engrafting from the transplant, is his body creating the enzyme it is missing. We will be putting special paper in his diapers a few days a week now  that catches urine. These papers are sent off and measured for the byproduct called “GAG” (basically the bad stuff that doesn’t get broken down without the enzyme). When his papers come back with a zero number, we know he is making enzyme on his own!

Many thanks to Pastor Don for visiting and bringing us a meal (thank you Hesse’s). We are so blessed to have such a wonderful support staff!

Sunday February 8, 2004 Day +17

Counts: WBC: 2800, ANC: 1980His ANC has tripled overnight, & his WBC doubled!

What a miracle!!!!!!!!!!!!!!!!!

Another shocking blood count report today.  His ANC is now in a normal therapeutic range!!  Again, I asked the nurses if this is OK and something else is not going on in his body. (Cautious positive optimism). We are reassured  that everything is OK.

Joe got a little carried a way and Christopher took a whole jar of Chiquita Bananas this morning.    When I got in from church at 1:30, he threw the whole can up on me. Christopher will now be taking solids 1-2 teaspoons at a time a few times a day! He hasn’t had solid food in a month, and I don’t think Joe realized his tummy has to get used to food again. Now we know!

Christopher is still getting platelets because his levels are low.  Nothing to worry about.  We just have to be very careful because he bruises easy and any cuts that he might get don’t clot very quickly. He has a few bruises on him from where he has started playing. We also found some very odd little blisters on his fingers.  No rhyme or reason for this.  They seemed to have popped on there own and are healing. (I believe due to platelets).

He has an ear infection.  I finally was able to convince the doctors that it might be worth while to check his ears.  They took a look late last night and he has an infection in his left ear.  They are going to start him on Augmentum or Amoxycillan today.  Antibiotics that he’s had before that work well for this.

We know we still have a long road ahead of us, but at least it is a road we can travel. We have to get his pain under control, start him on eating, and start bringing him back from the damage chemo.

What a wonderful blessing his counts are!

P.S. If you have put an entry on the guestbook in the past few days & it is not there, we had technical difficulties & things got erased by accident, sorry!!!

Saturday February 7, 2004 Day +16

Counts: WBC: 1180, ANC: 637 Miracles are starting to come true!!!!!

I couldn’t believe it when we got our ANC count today! I asked them to double check to make sure they had the right patient! (To see the way Christopher’s counts have risen, and an explanation of numbers, check out Chemo Counting).

We are so overwhelmed, the ANC has doubled since yesterday! We are so happy, but still hold cautious reservation, because we know there are many more bumps in the road. However, what a wonderful start!!!!!!!!!!!!!!!!

We start the new antiviral medicine for his kidneys today for the adenovirus in his urine. There is a medicine they give with the drug to help protect the kidneys that comes in a pill form. Obviously, he can’t take a pill so the nurses were very creative in chopping it up, dissolving it in water, and sticking it down his throat!

We just got another transfusion of platelets, because his little body is using them up like a mad man!

We now have to take the journey back to normal baby status which will be a long one. He is still not eating and on TPN, so he will have to learn to drink, eat and start to crawl again. We have Physical and Occupational Therapy coming by to help out.

All the wonderful prayers from people are helping to save Christopher’s life! Please, Please, keep them coming, we still have an uphill battle for a very long time. But, it is a battle where we can see an end in sight. It is very far away, but the clouds are starting to lift, and we can see the faint light of sunshine at the end. The power of prayer is overwhelming and life changing.

 

Friday Feb 6, 2004 Update contd.

I just met with infectious disease and they are going to start Christopher on a powerful drug for his adenovirus. The only problem is it is extremely potent to the kidneys and we have to watch his kidney function very carefully. This drug could case kidney damage, but the drs feel we have no other choice to prevent the bug from going into his whole system. With no immune system, this common cold like bug could be lethal. So, we will be carefully watching his kidney function to see if any damage is being done daily. The side effects could be as severe as dialysis! So please pray, grow, cells, grow, and protect those kidneys!

Friday February 6, 2004 Day +15

Counts: WBC: 780, ANC: 312 Yippeee!!!!

Many, many, thank you’s and love to all the angels that participated in the 24 hour prayer vigil for grow, cells, grow!  You leave us all more and more speechless everyday! You have put so much love in our hearts. You have truly changed our lives forever by showing us all the goodness and love there is in the world. We would also again like to thank Nurse Becky, and the Slevin family for keeping our tummies full this week (there are only so many times you can eat out of a can)! The Slevin’s have become very special to us, and will always be in our heart, they have touched us very deeply. Their nephew Mighty Max became an angel last year after a long fight with Hurlers. Thank you for being here in our time of need, and we pray for your family every night. I look forward to the day when I can give you a hug in person and thank you for all the support you have given us.

The drs. feel very positive about his ANC (Remember it has to be at a steady level of over 500 for an extended period of time before they consider him really engrafting). But, we are getting there! HOWEVER, there is always a however, Christopher has developed Adenovirus in his urine. Adenovirus is a common virus, much like a cold virus that runs rampant, and is now being seen in the hospital by a lot of patients. Most people carry it and don’t even know they have it. Normally, it would cause one not to worry, but because he is immunocompromised we have to be  very careful with everything! We will get an ultrasound of the kidneys and bladder later this evening. We know it has not gone to his bloodstream so that is good, it means the virus has not gone systemic.

Infectious disease and oncology are trying to decide on the best meds to fight it. We will also go to CT scanner AGAIN later this evening to get a scan of the chest and make sure he is doing OK. He has been breathing a little faster, and it is more just a “check up”. (Plus, we haven’t been to the scanner in a week, so it’s time again). Dermatology is also coming by to look at a bump on his head and make sure it is just a bump and not something more.

So, thank you again to all our silent angels praying for us. As you can tell we need all the prayers we can get. Please know you are making a difference in our lives!

Thursday February 5, 2004 Day +14

Counts:  WBC: 1092, ANC:  Lab Error, No ANC count today

Another good day.  Christopher is doing wonderful.  We had him in his walker and on his alphabet mat quite a bit.  He played with his toys and made several attempts to pull himself up on the side of the crib.  Except for a few explosions in the diaper area there were very few episodes of crying and pain today.  His rash has subsided and he is getting back to the Christopher we know and love.

His blood pressure is still a little higher than we would like but the thought is that it may be due to the Cyclosporin.  Cyclosporin is the anti-rejection medication that he will be taking for a while.  If the high blood pressure continues he will go on a more constant dose of blood pressure medication.  Christopher is also receiving platelets almost daily.  Again, no reason for concern, just part of the healing process.

He has a little bruise on his head and under his arm.  The doctors think it doesn’t mean anything but want to have it checked out by a Dermatologist to verify its not an infection under the skin.

Unfortunately no ANC counts were received from the lab due to an error.  Hospital policy is to only due one differential a day so they would not due a second run.  Oh well, guess we will wait until tomorrow.  His WBC are going up fast.  Grow cells, grow…….

Thanks to Mighty Max’s Aunt, Uncle and family for the Lasagna, cookies, treats and drawings.  You are such wonderful and thoughtful people.

Thanks to Don Carlton for stopping by and offering up a word of prayer.

Thanks to Becky for stopping by and the awesome Chinese food.

Last but not least, Thanks to our entire CUMC family that held a 24 hour prayer vigil for us.  It’s your support and love that is getting us through this difficult time.

Wednesday February 4 continued…

7 pm

Enzyme infusion went good with no side effects. He will get his nebulizer treatment with the enzyme for his lungs later tonight. He has developed a little bit of ascites, which is basically retrained fluid in the belly. We are really watching his weight and putting him on more blood pressure meds.

Wednesday February 4, 2004 Day +13

Counts: WBC: 610, ANC: 73 Yippee!!!!!!!!!!!!!

3 pm:

This is wonderful, but we are still very far from being out of the woods! We have the beginning of engraftment when we get an ANC count! However, we have just begun another roller coaster ride. The ANC may drop back down to 0, and will continue to go up and down for a while. Only when there is a steady increase in the ANC, and the numbers get above 500, will there truly be engraftment occurring! So please keep praying, GROW, CELLS, GROW!

I feel like a proud new mom and keep taking his lab work results with me everywhere to show off! (Like I did with his first sonogram picture)! I make people look at the report to see the beautiful ANC # that could signal engraftment. Like I said, this is only the beginning of a new roller coaster ride, and we are no where close to be out of the woods, but for today, I will take a glimmer of hope!

Christopher actually got in his walker today. It’s the first time in weeks. He was in his walker for about 45 minutes! He stuck things in his mouth and had a grand time. He can’t sit, but can stand a little. His joints ache badly. Occupational and physical therapy came by today to start working with him and providing therapy.

His blood pressure is high, and we’ve had to increase his blood pressure meds and put him on some more. But, as we know, one day at a time!

We would to thank our wonderful church for the prayer vigil that will be starting tomorrow to help those new cells grow! Day +14 is the prime time when these cells start their growth, and we are so appreciative of all the love and support we have received.!

 

Tuesday February 3, 2004 Day +12

Counts: WBC: 410, ANC:0 (We should be getting an ANC any day now)!

Typical day in transplant land. Christopher still has a rash and no one can figure out what it is. The drs. think it may be one of the antibiotics, but it is one of the most important antibiotics we can’t do without. We will have a good period of a few hours, than he swells up, gets incredible pain and breaks out again all over his little body. We have switched his pain medicine from Morphine to Dilaudid, thinking he may be allergic to the morphine. It doesn’t seem to have made a difference, but is providing better pain control. He still has one and a half teeth coming in, so instead of going through teething on Tylenol, Christopher get narcotics (it’s our own little joke)!

I actually got to hold him today and rocked him for about three different times. He held his head up and pulled my glasses off my face and smacked me in the nose. It occurred to me, I need to get him “up and moving” a little. Just like when adults have surgery or treatments they are up and walking. Since he can’t walk or crawl yet, if I can have him sit in my lap and bang on my  head, at least that is some activity to help with the stiffness in his legs and arms. He seemed to enjoy it. I also got 2 sips of Pedialyte down!

We are giving him a nebulizer treatment every night now with an enzyme in it commonly given to kids with Cystic Fibrosis. It is helping break up some of the mucous secretions in his lungs. Tomorrow he will get one of his alpha-l-iodnase enzyme infusions (the enzyme he is missing). It will be one of his first infusions in a month. He’s also started again on blood pressure medicine. He’s getting a platelet infusion as I write this with a “Lasix chaser.” Lasix helps get out excess fluid from his lungs. I said mama needs a chaser of some sort, but no luck on getting that one yet! (However, a few of you owe me some chasers, you know who you are)!

I am very, very tired. My heart aches, my head hurts, and I’m so tired I can’t see straight. My bones even hurt, I worry a lot (but try to still somehow stay cool and not worry too much). I know this is something in life we have to get through. One day I will look at all these updates and I hope and pray they will all be a distant memory. I try to find one thing a day to make me smile or laugh, even if it is  for just a minute. An example is he has gotten the reputation for being a “sharp shooter” (once again little boy issues). Still having a problem with aim, he “let it rip” the other night and shot urine all over the wall, and the desk. Joe thought he was going to hit the electric socket and cause a shortage!

Additionally, today we put wet clothes on his bald little head. He looked like a little Shepard boy.

Monday February 2, 2004 Day +11

Counts: 140, ANC: 0

Very hard day. Christopher still has a rash and we can’t figure out what it is from. We will start experimenting with taking him off different medications and putting him on others to see if it is a medication reaction. He will turn completely purple and swell. He gets in so much pain, he becomes stiff as a board and just screams. We have finally gotten him comforted, after many hours, and will try our medicine switches starting tomorrow.

Sunday February 1, 2004 Day +10

Counts: WBC: 330, ANC:0

Saturday January 31, 2004  Day +9

Counts: WBC: 240, ANC: 0

Christopher still has a huge rash all over his body and is swollen to the point his eyes are almost shut. He is purple and pink  with hives, and is getting a little bit of skin breakdown around the neck from where he is sleeping. The drs. have 2 theories: 1) He could have developed what is called serum sickness. One of the drugs he received called ATG during chemo was based in a horse serum. He could be reacting to that. OR 2) He could have signs of early engraftment. Nobody really knows. His counts are still dangerously low, but rise just a tad. It could be something or nothing. Time will tell.

He is still on a million meds, and tons of steroids to try to bring the swelling down. He can’t really get out of bed because he is so sick. Joe and I take turns lying in his crib with our arms around him so he knows we are there and he is not alone. He still throws up and we just hold him when he vomits.

Sometimes he just lays there with his little Snoopy blanket over him and just shakes. It is the most heartbreaking thing, he doesn’t look like the same little boy. I pray every second of every day, for him not to be in pain and for us to be able to bring him home. Just when we think our hearts can’t break anymore they do. The one POSITIVE thing for the day is he is not having as much trouble breathing today.  He’s still on a little oxygen and all the heart monitors, but he is not having to work as hard to breath. Also, all of his cultures so far have turned up negative for sepsis in the blood.

Friday January 30, 2004  Day +8

Counts: WBC: 140, ANC: 0

Today was a repeat of yesterday with an echocardiogram and CT scan thrown in. He has a bilateral kidney infection, which we are just treating with more antibotics. It could be worse, so I’ve never been so happy in all my life to hear he has a kidney infection.

He’s received platelets, and has a weird rash. Dermatology came up and can’t figure out what the rash is from. He’s very swollen and is on  steroids, Benedryl, Atarax, etc…

Thursday January 29, 2004 Day +7

Counts: WBC: 60, ANC: 0

Bad, Bad Day

We’ve had a very rough 24 hours, and have learned to live life again hour by hour. Here is a quick summary:

 

-Christopher will spike a high fever, turn blue, shake, fever will break, than rise again (process is repeated all day long). Fevers are very high and scary.

-Mucositis (so we are still constantly suctioning him) and than he throws up.

-His heart rate is all over the place, and is very high. His pressure is also crazy.

-He’s received platelets, blood, and saline bolus.’

-We had to stop the Morphine because we didn’t know if it was messing him up. So he was in alot of pain today and didn’t sleep at all. I got in his crib and held him, and he finally slept for about an hour.

-X-rays of chest, stomach, blood cultures and ultrasounds.

-He has to have his own nurse because he is so sick, so he is getting one to one nursing care.

AND: the saddest part to me: He is loosing his beautiful blond hair. He will probably be bald by tomorrow. This just breaks my heart. I know in the grand scheme of things it is small, but his hair was so beautiful

Wednesday January 28, 2004 Day +6

Counts: WBC: 12, ANC 0 – We have officially reached no immunity at all

It was nice to have a good day yesterday, because today was a crazy one. As you can tell from the counts, he has officially “bottomed out” and we have reached no immunity. Christopher has been running fevers all day, and they have put him on yet another antibiotic. This is common during this strange of transplant, but can be very dangerous and he has to be watched closely. He started running a fever in the middle of the night – and it has only gone down a little. He looks so pathetic laying in his crib with a little wet cloth on his head! The drs. have taken a chest x-ray to make sure his lungs are still clear and nothing has infiltrated into the lungs. He is having a lot of mucous in his mouth from ulcers down the GI tract (probably in the esophagus). So at any moment, we can just be sitting and you can here the mucous, and it gets caught in his throat. I am always on alert to jump up and suction his mouth, throat, and nose.

We had another scare this morning and thought Christopher had developed something called “VRE”. Basically it would mean he would be resistant to the antibiotic  Vancomycin he is on, and there is some bug lurking around in his system that the antibiotic is not killing. Vancomycin is one of the strongest drugs there is, so if there is a bug that it is not killing, we are in major trouble. Extra isolation precautions are taken, and more antibiotics are added. Luckily it came back things weren’t as bad as they originally seemed and he didn’t end up having VRE.

I had a rough morning, I was tired, stressed, and very scared. I was rubbing his little head and a few pieces of hair came out, this will kill me when his hair starts coming out more. I know we still have a high probability of his hair falling out.  Anyway, I’m trying hard to hold onto my faith. It’s amazing how God puts people into your path when you aren’t even looking to help you realize it is going to be OK. I was really down and out.

Christopher had gotten sick, and he and his bed were a complete shambles. The nurse Kelly was awesome and cleaned him and his bed up while I went for a walk and cried. I went to get new suction tubing and there was a lady in there who just looked at me, grabbed me and let me cry. I didn’t even know her and she just started praying and telling me everything would be OK. I than thanked her, left, and went back to our room. Our good friend Becky that works here than dropped us off a homemade dinner for tonight and just hugged me. She came at just the perfect time!! The food here is very bad, and I often forget to eat or just eat some crackers. The thought of real food is so exciting (I’m going to go heat it up right now)!

As if that wasn’t enough, our Pastor than dropped by at lunch to give us a surprise visit!!!! In my darkest time, God sent me these wonderful angels to tell me to hang on, everything will be OK. We just take it hour by hour.

Tuesday January 27, 2004  Day + 5

Counts: WBC: 486, ANC: 96

Today was an awesome day, probably the best since we got here! Christopher’s nursery school teacher Ms. Heidi, and a friend from work, Connie,  came to visit. Christopher recognized Ms. Heidi immediately, and gave the biggest smile I have ever seen! He showed off for her, and tried to crawl in his crib some, she rocked him and held him and he loved it. It made me feel so good he recognized someone who loved him, and I was worried about him getting stranger anxiety.  But, he totally knew who Heidi was and this was a great feeling. I can’t wait to get him back to school.

His friends drew “pictures” and they are the cutest fingerpainting pictures I have ever seen.  It was also wonderful to see Connie,  a  smiling familiar face! Thank you both for the wonderful gifts, food, love and taking care of me for the day. I was so happy and smiling so much yesterday, it was nice to feel “normal” again! You made such a difference in my life today!

Monday January 26, 2004 Day +4

Counts: WBC: 130, ANC: 26

5pm:

Christopher has not felt good today, and slept alot. The mucositis in his mouth is really starting to bother him. Additionally, we have started him on TPN (Total Parental Nutrition). Since he has not really eaten, TPN will go through his veins and provide him nutrition. It will be a special combination of proteins, lipids, fats etc… (When you eat, your body breaks the food down to these building blocks, and it goes into the blood stream. TPN is just the building blocks already broken down and ready to go into the blood).

Christopher’s platelet count was low, so he had a transfusion of platelets this afternoon. Additionally I have asked for some burn cream called Silvadene to help with some burns on his tummy from all the electrodes (He has sensitive skin like his mom, and all the electrodes tear his little skin up).

9am:

We had a nice weekend, and Christopher was in a great mood. He was standing up in his crib! However, we have had to increase his morphine and put him back on a continual infusion of morphine. He is getting mucositis (mouth sores) very bad and is drooling alot. He screams when we have to do mouth care.

His little bottom is also beginning to hurt, and he is experiencing the chemo diarrhea. So, I do mouth care all day long, and change his diaper often to help keep him feeling good. His blood pressure is a little high, so for now we have him back on blood pressure medicine. His pressure could be do to one of the other meds he is on.

He had such a good weekend, I just hold my breath waiting for more side effects to come along. We still have at least another 2-3 weeks of possible bad side effects. I have learned to take life hour by hour and cherish it for what it is worth. So far, he hasn’t lost his beautiful thick blond hair.

Saturday January 24, 2004 Day +2, Christopher’s 9 months old today

Counts: WBC: 90, ANC: 0 (See chemo counting for explanation of counts)

Today is day +2. Christopher has almost bottomed out, and has no immunity. I am just holding my breath every second waiting for the bad side effects to come back again. Since he has no immunity, he is at a high risk for fever, infection, vomiting, diarrhea, pneumonia, etc… Any of which could be fatal. I just have learned to take every second for what it is worth.

We have had a good few days, and I actually got a smile. He flirted a little with the nurses so that is a good sign he feels ok for the day. His neck is still black and blue from surgery, and has multiple incision sites over his chest, but he is heeling slowly. We are giving intermittent morphine as he needs it which helps keep him comfy. He’s not drinking too much and has lost weight, but we manage to get a few sips of Pedialyte in him every now and then.

We just take it hour by hour, and pray, grow cells grow!!!!!!!

Thursday January 22, 2004  Day 0, Take 2

9:30 pm

From 8:42 pm-9:05 pm Christopher received the GIFT OF LIFE!!!

The transplant was only 9 minutes long (they had to flush with some saline which added on a little time) and there were 90 cc of unrelated umbilical cord stems cells!!!!  The stem cells were a very clear/red color like a “rosea wine color” (as the doctors called it). Christopher stayed awake throughout the transplant playing with Elmo and sticking his IV lines in his mouth. He stayed awake after surgery and fell asleep the second  the transplant was over. It was almost like he was waiting for the party to end.

We ended up going to the OR late today which is what caused a little delay in the timing of getting the transplant later. The doctor had to put the central line in a new incision site, their was an anatomical positioning that was causing the other line to kink.

Many thanks to everybody in the world for all your prayers and love. Please continue to pray for engraftment and the cells to go where they are suppose to and keep working. We know we have at least 3-4 weeks of bad side effects, but one day at a time.

We are so happy, we are one step closer to healing!!!!!!

10:30am:

Surgery scheduled for 1:00, 1:30ish today, transplant scheduled for 4 pm (remember, things change by the hour)! The surgeon just spoke to us, and they are going to do some studies in the OR and look at the anatomic structure of the veins. The surgeon had tacked the line down with 3 stitches last time, and somehow they all blew. So hopefully we will have a new central line for the cells to go through by this afternoon. Update more later……

Wednesday January 21, 2004  Day 0 (and a 1/2…..)

Update:  12am

Nothing ever goes as planned….  Christopher’s central line failed us again.  It seems to have collapsed on itself and they can’t draw blood from it.  They can put med’s in but can’t get draw blood.  Looks like another trip back to the OR in the morning.  This time they are going to use dye and try and figure out exactly why the line is working itself out of the blood vessel.  The current theories are that there may be some sort of anatomy anomaly such as a vessel with lots of sharp curves, or there is a blockage or clot forcing the line back out.  We will know more once he gets into surgery.  We have stated our case that we want the transplant to happen tomorrow and that we want the central line fixed once and for all.  The Oncologists have been great and have advocated for us every step of the way.  Kudos to Dr. Williams and Dr. Hickman for their efforts today.

The NICU nurses just came by and put an IV in his hand for blood draws and to use for his meds tonight.  This will likely come out tomorrow afternoon.

The transplant is still slated for tomorrow, most likely afternoon instead of morning.  Things change quickly so I hope you are keeping up……

Transplant postponed until tomorrow!!!!!!!!!!!!!!!!

Unfortunately, the transplant has been postponed until tomorrow! Due to having surgery yesterday, Christopher did not end up receiving his last chemotherapy dose until late last night. The doctors were also worried about one of the drugs he was taking, was causing his heart problems. The drug is mesna and it helps protects the kidneys and bladder against the chemotherapy. Instead of infusing it over a few hours, they are infusing it over 24 hours hoping this will help with the erratic heart rate he has been having. So, the transplant is put off until tomorrow, the chemo has to be out of his system 18-24 hours before he gets his new cells!

Overall, Christopher seems to be doing OK. He has started taking blood pressure medicine, in addition to cyclosporine (to help prevent rejection), fluconazale (to help protect against yeast infections, fungus and thrush) and his usual host of antibiotics. We even got some apple juice down him and a smile! I got some sleep last night due to my mom being here and helping. Sleep is good, especially when you hadn’t had it for a few days.

Thanks Samantha for stopping by today.  You will never know how much your kind words of encouragement mean to us.

Thanks Dr. Kahler for your many trips to see us every day.  Hope you enjoyed the cookies and potato chips.

So, look for Day 0, take 2, tomorrow!!!!!!!!!!!!!!!!!!

Tuesday January 20, 2004  Day -1 Oh What a Day!!!!!

Well as in our usual crazy days, we had an emergency CT scan of the head, and a trip back to the OR!

Christopher was having trouble last night with his pulse, heart rate and temperature. His pulse and temperature became extremely low. They stopped his pain meds, and put him on a heating blanket. Additionally, because his blood pressure raised so high the doctors decided to do a CT scan of the head. They were not sure why his vitals became so crazy (perhaps a combo of all the meds) is what they were thinking. However, they wanted to rule out a stroke, so we went down to CT and had a scan of the head done (thank goodness it was negative).

Additionally, we ended up having to go to the OR to get his central line fixed for the 3rd time! The 3rd time better be the charm!!!!!!!!!!!!! He hadn’t eaten for about 15 hours, and was beginning to be become a cranky little man. In the OR they said his line had coiled, and looped up in his neck. The doctor said he had never seen this before (of course, my Christopher always has to be the trailblazer)! He has one more dose of chemo to get and couldn’t get it until the line was fixed. The chemo than has to be out of his system for at least 18-24 hours. It’s 9pm and so far it’s not up yet, but we are hoping he will have it soon. This will hopefully make transplantation sometime late tomorrow afternoon or early evening.

Please keep us in your prayers for a successful transplantation and all the difficult days of engraftment ahead.

Monday January 19, 2004 Day -2

Once again, another challenging day,

We started out early this morning with some cardiac problems. One of the medications we give Christopher, Cytoxan, starting causing him to have an erratic heart rate. Cardiology came up and did an echocardiogram and EKG to make sure his heart was doing OK. So far it’s Ok, and they are going to slow down the Cytoxan rate tomorrow. Yippee, our last dose of chemo is tomorrow at 6am!

He’s still been having some crazy heart beats all day, and they gave him some blood because he was anemic. This morning, he didn’t have enough fluids and wasn’t urinating alot so we had to give him a lot of IV’s of fluids. Now his blood pressure is too high and he has to have Lasix to help him get rid of excess fluids (Lasix will help him urinate it out).

We’ve been having problems today regulating his pain. Since he began his PCA, his pain has actually been a little harder to control and we are having to give him additional morphine, in addition to the continual infusion. And, if that wasn’t enough…..

We’ve started having problems with his central line AGAIN. Surgery has just come by and they are trying to manipulate his line so we don’t have to go back to the OR. The tip of the line that is in his body has moved. We can get fluids to go in, but can not get blood out (we need blood to look at his counts). We had a few X-rays today so the surgeon is currently reviewing them as I write this to figure out what to do.

So, our life has slowed down to more of  hour-by-hour versus a day-by-day.

Sunday January 18, 2004 Day -3

Update 9pm:

In all the craziness and sadness, there are 2 funny stories for the day that made us laugh:

Being a little boy, and one that does not have his “aim” down yet, Christopher urinated backwards, soaked his central line and the nurse and Joe had to do a dressing change on his central line. At the next diaper change (you think Joe and I would have learned by now) his “aim” went backwards again, and he got himself in the eye. He scared himself so bad he started crying and threw up all over the place. It truly was a memorable moment.

7pm:

Today was a better day. I believe it is because we got his pain control issues managed well. The pain control team came up and put him on a Patient Controlled Analgesic machine. This will provide a low dose of morphine at all times. When Christopher’s pain is under control, we will sometimes play in the crib for a few minutes and he looks like himself. We didn’t have any vomiting today, but the diarrhea associated with chemo is beginning. We are still doing our regular routine of changing diapers every 2 hours, mouth care etc… We even got small sips of Pedialyte down today!

The nurses are great (thank you Grace for everything today) and take care of us as well as Christopher. Even though we know the side effects will last at least another 3-4 weeks (all depends on his engraftment and he could have lifetime complications), only 2 more days of chemo which is great.

Saturday January 17, 2004  Day -4

Summary of Christopher’s day:

-Sleep, vomit, scream from pain, vomit, drugs (repeat process all day long). We’ve had vomiting on and off all day and intermittent screams from uncontrollable pain. We’ve been playing with combinations of drugs all day to help all the symptoms. We are now giving him Morphine every 4 hours, Ativan, and Zofran to help with pain and nausea. Tomorrow we are going to request the pain control team and put him on an infusion of morphine around the clock. We still can’t pick him up or hardly touch him, he just screams. We decided just to stay ahead of the pain by keeping the dose at a continual level. Sometimes the pain just hits him and he gets uncontrollable.

He started two new chemo drugs today called Cytoxan and ATG. We are giving him a ton of fluids (so the chemo won’t sit in the bladder or kidneys) and check his diapers every 2 hours to make sure he is not retaining fluid. He also is receiving a drug called Mesna to help protect his kidneys, and is additionally getting steroids and a constant infusion of antibiotics. We do mouth care twice a day and we swab his mouth with a special solution to help with the pain from mouth sores. Christopher was starting to get blisters and skin breakdown on his little legs from being in the crib. I requested lambswool and put it under his sheets to make it softer and prevent more breakdown. It seems to have helped prevent more blisters.

Since I can’t pick Christopher up and hold him now, I will often climb into his crib and try to put my arms around him. There has been many a time where he has fallen asleep with me in his crib, snuggled against me and holding my finger. Especially when he is in pain, this seems to bring him comfort.

Sometimes the pain of seeing him go through is too much for my heart to take, and I just cry and cry. It is so sad. But, I want to thank people for all the wonderful e-mails, calls, and offers to visit and let you know how much it means to us. Thank you for being our rope to pull us back to hope and love.

Friday January 16, 2004  Day -5

Today was a better day, and we are focusing on pain control and nausea.  The doctors, nurses and us decided at this point pain is the #1 priority. Christopher is getting occasional morphine throughout the day, and Ativan (like Valium) to take the edge off. He is also getting Benedryl and Zofran for nausea. As long as we can keep ahead of his pain with the medications, he is comfortable. He does NOT like to be touched and screams if you even have to change his diaper. We got little sips of Pedialyte in him, so I considered that good. He has no interest in toys, and is now just sleeping through the pain and chemo.  Within the next few days we will probably start with the Pain control people and get him a Patient Controlled Analgesic pump that will give a continuous infusion of morphine (probably closer to day 0).We start a new chemo tomorrow called Cytoxan, and we have to give him a lot of fluids and change his diapers every two hours. We don’t want the chemo to build up in the bladder and cause damage. We have to do frequent diaper changes to keep the chemo off his skin, and to make sure his kidneys are processing everything (they weigh the diapers to see how much he is urinating).  He looks like  a puff ball from all the fluids (it helps keep the chemo going and out of his system) and is very swollen. His eye has swollen shut again.

The weird rash is gone. We don’t know if it was from one of his antibotics, or from the sheets he was on, but it’s slowly faded. Joe and I went to a nice luncheon on the floor today with all the parents. The oncology floor has a luncheon every Friday for the parents so people can talk. It was good and helped us feel confident in some of the decisions we are making and to know what to expect at different stages of the chemo.

 

Thursday January 15, 2004 Day -6

Christopher has really stopped drinking and taking liquids. We can get little sips of Pedialyte in him occasionally, and if we are lucky he will keep down a little of it. Today was Joe’s turn and he threw up on Joe twice in 5 minutes!!

Today is only slightly better than yesterday. We haven’t had any breathing or cardiac problems. Also, they took blood cultures from his central line and so far they have all come back negative (which means there is no infection from the central line, and so far no trip back to the OR).

He’s still in pain, and we are still giving him Morphine, Benedryl (he is extremely nauseas), Zofran, and all his antibiotics in addition to the chemo. He was screaming this morning uncontrollably and after the morphine and benedryl he was better. I was able to get him in his walker for 1 hour! My goal is to get him in his walker at least 30 minutes a day to try to keep some muscle tone in his legs and let him walk a little. After we got his pain under control he was able to walk in his saucer and play a little. I’m trying to keep his motor skills going as much as possible. I’d like to do it twice a day, but when we try to do it at night he just throws up on us (so we will just settle for the morning saucer since this is what he wants)!

He’s slept a lot of the day, and we are trying to keep him comfortable. When you touch him to do anything he just screams and he feels horrible all the time. He still has a rash and the doctors thought maybe it was from the sheets (since they are washed in a harsh bleach). So we have his sheets and blankets from home now on his bed. However, the rash is still a mystery due to drugs.

Christopher is still very swollen and puffy, and we are weighing him twice a day now, to make sure he is not retaining too much fluid. He is getting a lot of IV fluids, and we just have to make sure they are leaving his system.

His White Blood Cell Counts are officially dropping, he has now decreased by half. I feel like Joe and I are providing 24 hour a day nursing care in addition to the nurses on the floor. He is so sick we can’t leave him at all. We were prepared for the side effects, we just thought we would be one of the lucky ones and they would happen closer to day 0.

*Many thanks to Mema Karen and Papa Lin for their help the past two days!

Wednesday January 14, 2004  Day -7

Bad, Bad, Day

Today was not a good day at all and the side effects may have already begun. Quick summary:

-We thought we would have to go back to the OR for a 3rd central line, the doctors thought we had another line infection. So, we had to have another surgical consult (so far, no trip back to the OR). We got a chest x-ray to confirm the line was placed correctly and hadn’t moved and it was still in the right location. The right side of his face was so swollen his eye was swollen shut. His whole face is very swollen. We think it may be because of the central line, the surgery was on the right side.

-Christopher started having breathing problems, his heart rate shot up, his oxygen went down and we got another emergency chest x-ray and EKG. He got a breathing treatment, a nebulizer, and it helped open his lungs some. He finally got a blood transfusion, and than had a transfusion reaction! His temperature kept increasing and spiked pretty high. We than had to work at getting it down.

-He threw up on me twice! I smelled wonderful! We now know he can not drink milk and he has stopped eating. Also, any medications given by mouth he throws up.

-He kept getting weird rashes and he is on so many antibiotics nobody knows what it is from.

-He’s on Benedryl, Morphine (for pain), Zofran (for nausea) and tons of antibiotics in addition to the chemo. He seemed to be having a lot of pain today.

Tuesday January 13, 2004   Day -8

Surgery went good today, and intubation and extubation went wonderful, and the swelling in his trachea had dramatically decreased. Chemo was started tonight.

Many, many thanks to our wonderful Pastors who came up to visit, thank you so much!

Monday January 12, 2004

My final thoughts on starting chemo:

I will not lie, I am terrified to start chemo tomorrow. To make the decision to put an 8 month old through what the following weeks will hold are heart breaking. This being our last day at our own home for a while brings many emotions. However over the past few days I have come up with some final thoughts I am trying to hold onto.

For the first 5 months of Christopher’s life I took him to the doctors (or surgeons I work with) every week. I just “felt something wasn’t right” with this little baby. Finally, after 5 months, somebody helped me and we came upon the diagnosis of Hurlers Syndrome. We swung into action (along with many wonderful friends) and helped find him the best medical care we could. We brought him to Hopkins, and found the most incredible geneticist in the world (yes, this is you Dr. Kahler). We were than led to an incredible oncology team, that found an umbilical cord stem cell match quicker than expected. Joe and I often reflect on how if Christopher had been born even a year earlier there would not be the technology to help make him as healthy as possible going into chemo . We refer to the enzyme therapy being approved in April, the month he was born, and he has had 6 treatments prior to transplantation. There has already been a positive change in his solid organs, face, airway, and hands.

I feel now it is time for me to turn him over into the hands of God and the doctors. We have brought him to this point and now it is time to let medicine, faith and prayers start their work. Don’t get me wrong, I will always be a strong advocate, and I never leave his bedside. I am a Hawk and don’t let anything get past me when he is in the hospital. Be it pain control medicine, what the latest lab work was or whenever it is time to advocate I am always at his bedside. However, Joe and I have brought him to Hopkins, and gotten him the best care we feel we could bring him. This is where I feel we were led by instinct, research and prayers.

Christopher will be almost 9 months when he receives his transplant. This is the age I was when I had my first open heart surgery.  Nobody truly knew what my chances were, and my parents had to make the decision to hand me over. It is now time to turn Christopher over and to let God hold him safe in his arms and give him comfort, protection and healing in the weeks and months to come.

Monday January 12 2004

We have been home since Friday night and it has been wonderful! It’s nice to be in our own home again. We will go to the hospital tomorrow for surgery and to start chemo. Christopher will get his central line in the morning and start chemo about 5 pm. I am very scared of the side effects of chemo so please pray god will be with him and comfort him through his pain throughout the next few difficult weeks.

Many thanks this weekend for all our wonderful visitors, the flowers from church, and the wonderful people who spent time with us and held our hands when we needed it most!! Thank you again from the bottom of our hearts for all the wonderful friends who have decided to walk this journey with us and give us strength when we need it most. We are so blessed to have you!

A special congratulations to:

Our good friends Daisy and Bill as they welcome their new baby William Jr. home. It sure is raining boys in heaven! Our friend “Ms. Baby Thomas”  will have her pick of so many boyfriends (to be making her debut in May).

Thursday January 8, 2004

Christopher was suppose to go to surgery today, but they canceled the trip to the OR for the central line this morning.  He has a very bad case of the flu and started breaking out in a weird rash yesterday. He would suddenly spike a fever and start hysterically crying and get a viral rash. Because he started getting a fever off and on,  they have decided to move surgery to Tuesday. It will be Tuesday morning and  we will start chemo Tuesday afternoon. Supposedly, the flu is just rampant in the hospital and everywhere else, but they still feel confident about him going into chemo on Tuesday.

To counteract the viral rash, they gave him Benadryl. He had what is called a “paradoxyl reaction” to the Benedryl, which basically means he had an adverse reaction. Which means,  instead of sleeping, Christopher was ready to party hard! He was out of control hyper. Banging stuff and singing in his crib till almost midnight and trying to pull himself up on the crib. The night before he was holding pillows above his head and trying to throw them out the crib from the Benadryl. I think I could have taken him down to the Inner Harbor and he would have been ready to go dancing. We have had more IV’s started (he blew the one in his foot again),. blood cultures and everything under the sun. I was exhausted and Joe is here now to take over so I can sleep. We have been transferred to the research floor so he can get an enzyme infusion tomorrow.

Our schedule for now (however things rapidly change by the minute)

Friday  Jan 9- Enzyme infusion and we get to go home, Yeah!!!!!!

Tuesday Jan. 13– Surgery in am and chemo starts in pm.

The past days have been tiring and heart wrenching, with some of the experiences too heartbreaking to even describe,  and the fun of chemo has not even begun! However in all the midst of craziness last night, Pastor Don from our church just showed up at our hospital door. I didn’t know he was coming, he was just a wonderful angel that appeared when I needed him.  I cried when I saw him, God was truly sending him to me in my most desperate hour. Thank you Pastor Don for giving me hope again last night and helping to heal my heart, and thank you to all our angels out their who are praying for us!

 

Tuesday January 6, 2004

To summarize the past few days: Surgery came up and removed Christopher’s central line in his crib on Sunday night. Luckily he didn’t have to go back to the OR to have this removed. But, he will have to go back to the OR by the end of the week to have a new central line put in!!!!!!!! Ahhhhh!!!!! Another trip to the OR, not sure if it will be Thursday or Friday yet. Central line infections are common and happen a lot -they just happen- no reason why. It’s a foreign body and no matter how careful you are it happens.

The really horrible part of the past 3 days is they need to get “peripheral access” (an IV in his veins) to draw blood off of and infuse antibiotics. So far he has been stuck almost 10 times, with not but one stick successful. (When I say stuck, I mean they have tried almost 10 times to get an IV in him). That one successful IV we have been able to get was in his foot, and is now “blown” and had to be taken out (IV stopped working and the fluids were going into his tissues and not his veins). So we are waiting for the NICU nurse to come and try. Even the IV therapy team can’t get an IV in. Infants are very hard to stick and with the syndrome his skin is thicker. It breaks my heart every time because he screams out of control (but I might too). We had a bad IV incident today and I am currently wearing a shirt covered in blood. Because we were an emergency admission, I didn’t bring any other clothes so I’m just setting a new fashion standard till the gift shop opens in the morning and I can get a new shirt to sleep in! Last night was hard because he was getting a lot of infusions around the clock, and they had to try again to get an IV in the middle of the night. But, I got an hour of sleep today and felt like a new lady. Christopher also has a cold, and we are in isolation. To even enter our room you have to wear a gown, mask and gloves.

This is such a strange different world. Parents talk about “Hickmans, Mediports, and Broviacs” (types of catheters), and discuss the different types of chemo like you would discuss a regular day. Worlds revolve around “positive” and “negative” chemo days, and blood counts. It’s so sad, no child, and no parent should ever be robbed of a childhood by such dreaded diseases. The parents all walk around with red sad eyes, and I don’t know if I even ate today. I am trying so hard to hold onto hope and somehow Christopher will be a miracle and come through this unscathed. However, setbacks like the central line thing, before we even start chemo, cause my heart to break even more. I strongly advocate every few hours for benedryl and tylenol to keep him comfortable. (However the Benadryl had a reverse effect tonight and he was throwing pillows out of his bed till 1130). If I feel at anytime uncomfortable with anything, I also voice strong concern-you have to be your child’s advocate 24 hours a day- and the nurses and doctors. are great. They totally respect it and understand, we are very happy with the staff.

I guess just day by day. I have asked the hospital chaplin to come by when he can and say an occasional prayer. It’s the only thing I know to do to keep helping him.

**If you have your health, you have everything***

Sunday January 4, 2004

Today they decided to remove Christopher’s central line due to the infection that won’t seem to clear up.  They put in a regular old IV in his foot after 4 missed sticks in his arm and hands…  Very frustrating to watch your son get poked so many times and see him cry.

He will be on antibiotics all week and once we get three negative blood cultures in a row they will reinsert the line.  We are hoping to stay on schedule for January 13th for the start of Chemotherapy.

Paige is at Hopkins with the little one and Joe will be going to work Monday, Tuesday, Hopkins on Wednesday and back to work on Thursday, and Friday.  We may all be able to come home on Friday for the weekend before our long term trip.  He will get his enzyme infusion on Friday before we come home.  The doctors have already noticed significant changes in his flexibility and the size of his liver and spleen.  Plus he seems like a generally more happy dude…

As a side note, it seems that Christopher gets a side effect to Vancomyacin called Red Man’s.   Go figure, since Paige is…  The doc’s want to continue with this med and try to counteract the allergy with Benadryl.  Vancomyacin is the best antibiotic to fight a broad range of infections so they feel this is our best option.  His reaction is redness on the face, arms and torso.  Its call “red mans” reaction.  Not to terribly dangerous but somewhat uncomfortable.

BTW: Christopher has the flu on top of everything else….  Poor guy is sneezing and coughing all the time and his poor little nose is all red.

Saturday January 3, 2004

1100am: On our way to Hopkins to be admitted for the flu and an infection in Christopher’s blood stream. Our oncologist just called us and told us we need to come up and be admitted this am. We need to be evaluated by surgery, oncology and infectious disease.

I have had many people call and ask what they can do to help and I don’t know at this point. My head is swimming, and we haven’t even begun chemo! I guess just please keep us in your prayers. The donations that have been given have helped give us great piece of mind. We are slowly approaching the point where we may have to both go without salary for a while. I have only been able to work one day in two weeks, and Joe has had to use a lot of his vacation for all the hospital stays. So knowing we have this money already is a great comfort.

We will update more when we can…….

Friday January 2, 2004

Chemo postponed until Jan 13 due to infection, fussiness and teething. Will update more this weekend – we were at Hopkins all day and had a million things done and are exhausted!

Wednesday December 31, 2003 New Years Eve!!!!

Today was unfortunately a very bad day. Christopher hadn’t wanted to eat for a few days and has been very fussy like his stomach hurt. We called the oncologist  yesterday and she suggested suppositories to help get  him to go to the bathroom, he hadn’t had many bowel movements in the past few days. So today, after he still hadn’t gone to the bathroom and was in pain (he probably had a blockage), things finally got rolling-we’ll just leave it at that, trust me, you don’t want to know the details.  His stomach doesn’t seem to be hurting as much. I’ve been forcing Pedialyte down him all day (so he wouldn’t get dehydrated), and he finally started eating tonight again. Very traumatizing, more so for me.

On top of that he somehow has a high fever, even though he is on the antibiotics. I called JH and they said they don’t think it is related to his central line (thank goodness), it may be a bug that just runs its course. So we are taking his temp and still giving him drugs around the clock. We just got it down to 101.0 so hopefully it will keep coming down (it was as high as 101.7.)Hopefully he will break his fever soon. We have him in his bouncy chair with wet wash cloths on his head, it’s kind of pathetic looking! I hope we don’t have to delay chemo another week. But, whatever is safest we will do. We will be at JH on Friday for another enzyme infusion and oncology will decide if we can go ahead and start chemo on Sunday.

I will be working tomorrow so if you are in the Northern Va area, please be good tonight so I don’t have to take care of you tomorrow! ? But have some fun for us!

Well tomorrow is a new year, and a new year of hope!!!!

Monday December 29, 2003

We are home from JH (for now)! Christopher has been on Vancomycin (an extremely strong antibiotic) every 8 hours since Friday. We had to stay into the hospital until today to make sure their was no growth from cultures that were taken. When he came in they cultured his central line for things like staph, fungus, etc… Luckily the 24, 48, and 72 hour cultures came back with no growth. However, we still have to treat with around the clock antibiotics because their is still slight puss coming out of the catheter site, and he can have NO infection lurking around at all, before we hopefully start chemo on Sunday.

The home health nurse came out today and brought a week worth of antibiotics and taught us how to be “home health nurses”. We have no food in our fridge, but it sure is stocked with Vancomycin! Every 8 hours Joe and I have to flush his central line with saline, connect the antibiotics, and let it run for an hour. We than disconnect the antibiotic, flush with saline, than flush with Heparin. We have a chart we live by, and are very careful to make sure he gets the antibiotic on the dot.

He’s still been a little fussy at night, but I really think it’s just being uncomfortable from the dressings and the line. (He has a dressing that covers his central line). I think his dressing is extremely itchy and he pulls at it alot. In addition, when he was on Augmentin  (antibiotic) last week he was going to the bathroom all the time, now we have the opposite extreme with the new antibiotic, and just can’t find a happy median!

Christopher had a very busy weekend, and “worked” at the nurses station (he was really kidnapped by the nurses and hung out at the nurses station ALL weekend).  He is such a charmer, it is really amusing. He can have his mouth open and screaming for us, but as soon as a female (be it nurse or doctor) walks in the room, he turns on a certain little charm. He loves helping the girls “work”. We love it too, because we actually get more rest in the hospital, (even though my back permanently now resembles a pretzel due to sleeping in the chairs).

Another wonderful note, he stood for the first time. We still have to hold him up, but his legs got straight and weren’t floppy like Jello like they had been. Yeah!!! Overall he is so happy these days and smiles a lot. I’m glad he is actually on this course of antibiotics, it makes we feel like we are going into chemo healthy as one can get. Dr. Kahler (genetics) also wants to get another ultrasound of the liver to see the size, because he feels the swelling has gone down so much from the enzymes.

Joe and I are both going to try to work some this week and take turns being “home health nurse”. We are starting to get a little bit of care giver stress and are trying to both get out so as not to get to overwhelmed.

We’d like to give a shout out to:

The wonderful nurses and everybody in the world at Hopkins. Your love for Christopher is amazing and overwhelming. You have changed our lives in ways you can’t imagine

Our good buddy AJ Masse who was born yesterday, Christopher has so many tricks up his sleeves to teach you about women (and how to chug a bottle).

Our dog Nick who is in “foster care” at Grandma’s. We miss our eldest son.

**We hope everyone is good. Christopher is watching “Harry Potter” and laughing and I must go hang his 1100 meds. ?

Saturday December 27, 2003

Well, here we are again hanging out with our friends on the Pediatric Clinical Research Unit (PCRU) at Johns Hopkins (JH). But that’s ok because we love them and they make us smile!!!! They had Christmas presents for Christopher and we have become wonderful friends.

We had a little scare on Christmas because I noticed  puss coming out of his chest and on his dressing where his central line was. We called JH and they said as long as he wasn’t running a fever and it was dried puss (which it was) we would be OK until Friday when we came in for our enzyme infusion. Christopher had been a FUSSY man since Monday, probably because he didn’t feel good. It was getting to the point I was taking two showers a day because I was sweating so bad trying to take care of him!

We came yesterday for the infusion and the swelling in his liver has gone down, and he has range of motion in his hands! He can now open and close his hands and use them in ways he hasn’t been able to before (including throwing things at the poor dog). Huge change in his hands! The doctors started him on Vancomycin 3 times a day by IV for a week, and postponed the start of chemo a week. He can have absolutely no infection at all going into chemo and this is why we have postponed it. He had a bad night last night and vomited all over himself and Joe.  We once again had an unplanned admission for the infection (we thought we were going home yesterday) so I went home and grabbed a few things and came back early this am and Joe spent the night.

Today seems to be better. He has been hanging out at the Nurses station all day and “helping them work”. He helped by banging on the computer and eating chips with them. He also “hung out on the porch” (we pulled chairs into the hall and put him in his saucer and called it the porch) and talked to everybody that walked by. The only thing missing was a cool beer. (Mommy needed a big one). He is getting very cranky after his evening Vancomycin dose and is crying a ton. I just asked for some Benadryl to calm him down and so he won’t vomit again.

We will be here until Monday and home health will come out Monday afternoon. He will still be receiving Vancomycin around the clock and we need to make sure he has a therapeutic level of antibiotic in his bloodstream before we go home. Vancomycin is an extremely strong antibiotic that should kill just about anything. Central line infections are common since it is a foreign object in the body.  When we go home Monday home health will bring us our own IV machine and Joe and I will start administering IV antibiotics around the clock until we came back next Friday for another infusion. I’ll make a nurse out of Joe yet!!!! I’m very blessed to have such a wonderful hubby to help out and do so much. It’s really allowing me to be mommy instead of nurse Paige everyday, and is making a huge difference. I think Joe and I are starting to get care givers stress a little, but we are just taking it day by day. The nurses are wonderful and taking very good care of us and it is making a huge difference.  I’ll be sleeping in chairs again for the next few days which is starting to make my back all crazy. So, the next time you see me, if I am walking funny, it is just a messed up back from the chairs, I’m not trying a new type of strut!

Much love to you all!!!!!!!!!!!!!!!!!!!!!!

Wednesday December 24, 2003 Christmas Eve!!!!!!!!!!!!!!

 

Thank you all for all the wonderful love and support you have shown us. You have made a difference in our lives that can never be described. God has truly blessed us. We have never felt alone since he has been diagnosed. Our doorbell will ring and a friend will be there with a hot meal, a stack of diapers, or a shoulder to cry on. We don’t have to ask, you are just our angels who are there. We have also heard from friends, sorority sisters, and so many wonderful people (some of whom we have never met) from all over the country.

Thank you for showing us all the love and hope there is in the world this Christmas!!!

Tuesday December 23, 2003

We are sorry it has taken so long to update. Between Christmas and Christopher’s central line things have been a little crazy!!!!

Last Thursday went well when we went to Oncology. We went through our schedule for chemo and transplants and Joe and I signed consent forms. In the afternoon Christopher went to surgery for his central line. The toughest part of the day was he couldn’t eat, and surgery wasn’t until 300! However, everything went well and we didn’t end up in the PICU this time! Yeah!!!! On Friday he had another enzyme infusion and the infusion went well. We are very thankful to all the nurses who spent time with us teaching about his lines, and how to take care of them. A central line goes into the superior vena cava which leads into the heart. It comes out of his chest. There is about a foot of tubing that comes out  of his chest, and has 2 ports on the end. We have to flush the line everyday with Heparin, an anticoagulant. This ensures his line does not clog up. Also, we have to change the dressing on this line once a week. We do this by sterile technique and had the home health nurse come out Saturday. She taught Joe about sterile technique, how to flush lines, and change dressing (I know how to do all this from work). However,  I got so nervous trying to flush his line on Sunday, “Nurse Joe” had to step in and help out! It is very different being on the other side of the stretcher!  I have had open heart surgery twice, and always felt  I had compassion for patients on the “other side of the stretcher.” However, I am learning that experience all over again, except this time it’s a million times harder, and hurts even worse,  because it’s my baby!!!

Christopher has been cranky the past few days and I think he is uncomfortable because of his central line. I changed the dressing, and put a new bandage on. I also cut a hole in a t-shirt to put the lines through so they wouldn’t touch his skin. Only 6-12 more months before we can have it removed!!!

One of the positive things about him being in the hospital on Friday was our visit by “Dr. Boots” (clown) of the Big Apple Circus. He came in and visited us and blew bubbles like crazy. Christopher loved the bubbles and went crazy. I have since bought many bottles of “emergency bubbles” and keep them in every room and in my purse to help with boredom and pain from procedures.

Wednesday December 17, 2003

Off to Hopkins again tomorrow!

Our schedule:

Thursday: We will meet with Oncology to sign off on Chemo paper work. Christopher will have an exam also. He will than go to the OR at 300 for a double lumen Hickman catheter. This is a catheter that will be placed in the upper part of his chest. This will be his “access site” for blood work, medications, IV’s, etc… The catheter is placed so he does not have to have any more IV’s, and everything can be done through the catheter. This is commonly done with almost all cancer patients or patients needing long term care or medications. It is very difficult to give a patient a lot of medication or draw blood through IV’s. He will be intubated and put under general anesthesia AGAIN. Remember, last week when he was intubated for the MRI he ended up in ICU due to airway problems. This makes me a little nervous, but hopefully the two enzyme infusions he has had since than might have helped with swelling in his trachea. We will spend the night.

Friday: Another enzyme infusion and an eye appointment. The only side effects we have seen so far from the infusions are lots of smiles!!!!!!

We pray every day Christopher will come through this good. Our hearts are begining to feel ripped in two the more we have to go into the hospital. However, we are thankful for all the wonderful people we have supporting us.

Sunday December 14, 2003

It’s Snowing!

We were at Johns Hopkins Friday for an enzyme infusion and CT scan. Oncology needed a CT scan of the sinuses in the head, to make sure their was no infection going into transplant. Of course there was, so Christopher will be on Augmentum (antibiotic)  twice a day until we transplant. The enzyme infusion went well with no side effects. The only problem with the infusion is Christopher’s skin is very thick (due to syndrome) and very hard to get an IV in. After 3 tries, we had to get the IV team to come down and put his IV in. We are all looking forward to the central line being put in this week!.

Christopher had been screaming a lot Friday morning (due to trying to get the IV in), and than the clowns came!!!!! The Big Apple Circus has “medically trained clowns” that come and see the children and do age appropriate activities with the kids. The clowns blew bubbles and made silly faces and Christopher loved it! I started crying because I was so grateful to these wonderful volunteers for making Christopher smile again. I gave “Dr. Boots” a big hug! What a wonderful gift they gave us to help him smile and laugh during such a rough time. I made Grandpa Lin hold Christopher so I could watch Christopher laugh. They come to the floors and will be coming to Oncology and I am looking forward to their weekly visits!!!

Our schedule for the week coming up:

Wednesday – Home Health comes out to the house

Thursday – Back to Hopkins! We will go to the Oncology clinic and sign off on paper work for chemo. Christopher will also have a pre-transplant workup. That afternoon, it’s off to the OR for a central line. The toughest part of the day will be he will not be allowed to eat before surgery. He was not allowed to eat Friday, and starts screaming and being very fussy (but I would  be too!) We will be spending the night  at Hopkins with our friends on the Pediatric Clinical Research Unit again.

Friday – Enzyme Infusion and more doctors appointments, than hopefully we can come home.

Saturday – Home Health comes out to teach us how to flush his central line (his central line will need to be flushed with saline every day and the dressing changed).

**Oncology has decided on the umbilical cord we will use and it is being earmarked for Christopher and is on it’s way. We start chemo in two weeks!

Thursday December 11, 2003

We would like to thank all the wonderful angels at Centreville United Methodist Church for the incredible sandwich fundraiser this past Sunday. We sold out of 200 sandwiches before the 1100 service, and people kept giving donations.  We are so overwhelmed at all the wonderful people we have supporting us, there are no words to express how appreciative we are! The fundraiser raised over double what CUMC was hoping to make! Thank you!!!!!!

 

For more pictures of “Sandwich Mania” please click on How you can Help.

 

 

Off to Hopkins tomorrow for another enzyme infusion and testing. We will be inpatient again Dec. 18-19 for a trip to the OR for a central line, another CT, x-rays and another infusion.

Saturday December 6, 2003

We’re home today! After a trip to the Intensive Care Unit yesterday…….

Christopher had to have a MRI of the brain and spine to see if there was any damage done yet. In order to do this they had to sedate him, and intubate him. This means they give him drugs to paralyze him, put a breathing tube him, and hook him up to a ventilator that breaths for him. He had to lay perfectly still in the MRI, this is why he had to be put under general anesthesia.

Part of this condition is swelling of the trachea. He also has a lot of mucous buildup in his throat due to no enzyme to break down secretions. His trachea is very small and the tube was very tight against his throat. The doctors did not feel comfortable extubating (taking the tube out) in the MRI and took him to the Intensive Care Unit. When they finally took the tube out, his oxygen saturations (amount of oxygen in the blood) dropped and he was having difficulty breathing. They had a bunch of people working on him, and after some breathing treatments he came around. He was in the ICU for a few hours, than they moved him back to his room. He stayed on steroids throughout the night  (to decrease the swelling in his trachea) and they were monitoring him all night. His oxygen saturation never fell and we got to go home this morning. He also had more drs. consults yesterday by pulmonary, physical therapy and surgery.

My heart just broke to see him intubated and the doctors bagging him, it felt like it ripped in two. But, we are very lucky to have such wonderful doctors and Johns Hopkins now has our hearts forever! Everybody was wonderful and supportive. Also many thanks to grandma and grandpa mig for the surprise visit, shoulders and food!

**On a more wonderful note, our oncologist told us yesterday they have found a 2nd umbilical cord match!!!! How amazing!

**Christopher came through the enzyme treatment on Thursday with no ill effects. Although they had difficulty finding a vein, they stuck him 3 times, than had to call the IV team, the treatment went off without a hitch! We will be going back at least once a week for more drs. consults with other specialists, and enzyme treatments. Christopher will also go to the OR in a week or two for his central line for chemo to go through.

***Many thanks to all the prayers, e-mails and kindness in everybody’s heart.  Although our hearts hurt, we are so blessed and know we will be ok in the end. We have started our path to recovery!

Fundraiser tomorrow at Centreville United Methodist Church!!!!

Thursday December 4, 2003

We arrived at Hopkins yesterday morning at 9am after a very long drive and some confusion in Baltimore.  Christopher has had a range of tests so far including:

Wednesday – Christopher had an echocardiogram, and was sedated for the test. (The doctors think there is no damage yet to his heart)! After that there were  EKG’s, blood work and consults from many specialists. We had a sleep apnea test done last night which was extremely traumatic for everybody.  Long story short there was much screaming and crying by baby (and crying by mom). He slept from about 1030 pm to 5 am with leads pasted on his head with glue, and tons of wires and electrodes everywhere.

However, we got exciting news yesterday! The Oncologist told us they have an Umbilical Cord Match!  They matched 4 of the 6 HLA factors which is sufficient for the transplant.  We are on schedule for December 29th. Yippee!!! The oncologist didn’t tell us but she was very concerned about finding a match and didn’t think we would find one this soon. All those prayers are working!

Thursday -Christopher had his first enzyme infusion this morning. He is one of the youngest people ever to be transfused, and the youngest at Hopkins. He slept through most of it, and so far it seems to have had no adverse affects.  He has very difficult veins and they stuck him a few times and couldn’t get an IV. The nurses called the IV team to start his line. Late this afternoon he had a CT scan and pulmonary consult.

Christopher has already made a name for himself and is an extreme flirt. For an 8 month old infant they say he is extremely social. We had a meeting with the doctors yesterday and left him in his crib sleeping. When we got back he was hanging out at the nurses station with about 6 nurses around him cooing and giving kisses to him. He flirts with every woman that walks in his room and gives everybody a sweet little smile.

Tomorrow he is scheduled for some additional consults and an MRI at 12:30pm.  He will be put under general anesthesia and intubated for an MRI of the brain and spine. Before the MRI he will be seen for and ENT consult. If he comes out of anesthesia OK we hope to head back to VA late tomorrow night before the “snow”

** We have been so impressed by the staff. They are extremely supportive and very understanding. We feel so lucky to be in such a wonderful place and have so many wonderful people taking care of him. There is certainly a positive atmosphere of love and support for the patient and family. We would like to thank all the wonderful doctors and nurses for taking such wonderful care  of us, and providing many tissues for tears. We would like to thank our Genetic coordinator Amanda for all her work in coordinating all this, and the beautiful angel of hope she gave us. We sat it by his bed and it watched over him during the infusion!

Tuesday December 2, 2003

Well, it’s off to Johns Hopkins tomorrow for pre-transplant work up. Here is the schedule as we understand it at this time:

Wednesday– Christopher will be sedated and have a very extensive echocardiogram of the heart that will last a few hours. We will also have consults with various specialists throughout the day.

Thursday- First Enzyme Infusion! The infusion will take about 5 hours and will be done through an IV. He will be pre-medicated with Benadryl and Tylenol.

Friday – Brain and Spine MRI. Christopher will have general anesthesia and be intubated through out the procedure. The MRI is expected to last a few hours.

*We are still trying to get a sleep apnea test and pulmonary consult thrown in somewhere along the way. There will also be lots of blood and urine tests done in between the other tests.

*We will be home either late Friday night or Saturday morning. It depends on how he does coming out of anesthesia from the MRI since he will have been intubated.

*Joe and I will be staying at a boarding house at Hopkins and will take turns sleeping in Christopher’s room. We thought both parents could stay, but only one can.

*Hopkins has done a wonderful job of trying to coordinate all the testing and trying to get everything done during these days.

Thank you: Thank you Christy and Steve for keeping Nick! We totally forgot about the poor dog!

Prayers: Please keep us in your prayers. Our hearts just break anticipating all the testing the next  few days, and we pray he is not in any pain during any of the tests. We will talk to oncology while we are at Hopkins and find out the status of how our umbilical cord testing is coming along and if we are close to finding a possible cord match.

Wednesday November 26, 2003

Update:

We owe many thanks to Dr. George our dentist today. He told us his cousin in Greece has Hurlers. She is 28 and doing wonderful! It’s the oldest Hurler’s patient we have ever heard of, and she will be our inspiration! Some of you may or may not know, but 28 years ago, I myself had open heart surgery, and again 4 years later.  My condition is very rare, and the doctors didn’t know if I would make it, or be functional. Although I still have a few “kinks” I am 28, with 2 and a half college degrees, a house, a hubby and a baby. It goes to show so much of healing is a person’s spirit! I know Christopher has a wonderful spirit and hopefully he will be another babies inspiration to survive one day. We just want to “pay it forward” and give hope to others like they have given us.

—————–

Happy Turkey Day!

Christopher is desperately trying to crawl!

He was baptized this past Sunday in a beautiful service. He looked like the little angel he was. It was a perfect day, and also the only chance I’ll ever have to dress him up in ruffles and lace!

He is getting so strong, and becoming so active. We would like to thank all of Christopher’s teachers at Fair Oaks Hospital Daycare for the work they do with him to help keep his muscles strong.

We will be at Johns Hopkins starting Wednesday through Friday. We will be inpatient and he will have numerous tests done. He will get his First Enzyme Treatment  on Friday before we go home!  He is one of the youngest patients to ever receive this treatment prior to transplantation!

On Thanksgiving , we are very blessed for every person who has seen this website and said a prayer for us. You have changed our lives in ways that can never be described. We have hope and prayers, and many angels supporting us. We are thankful for everything.

Friday November 21, 2003

We found out we will be going to Johns Hopkins the week after Thanksgiving for a pre-transplant workup. We will spend a few days in the hospital and have a MRI, CT scan, ultrasounds, bloodwork etc… Christopher will also be evaluated by cardiology and have an echocardiogram. Christopher doesn’t realize this, but he’s already had many echos done (in my tummy) and at 1 and 6 weeks and is an old pro! Additionally, we will be seen by orthopedics, ENT, etc…  We will also have these same tests done after his transplant and they will compare before and after results to make sure their is no change.

Our insurance company told us today that they will NOT pay for any travel expenses. Hotel, living expenses when we live in Baltimore, gas, food etc… Although there is a “travel clause” in our insurance policy that would help us out, the medical facility has to be 100 miles away and Hopkins is 86 and they won’t budge! But, we had  angels  looking out for us today and gave us hope everything will be OK! You really were our angels today; Mr. & Mrs. Sunne and your friends!

I have put on a poem my sorority sister “Nurse Tooley” sent me today. It is the third time in a week someone has told me this poem or e-mailed it to me so I thought it should be posted.

Welcome to Holland by Emily Pert Kingsley
 I am often asked to describe the experience of raising a child with a disability- to try to help people who have not shared the unique experience to understand it, to imagine how it would feel. It’s like this:
    
    When you are going to have a baby, it’s like planning a fabulous vacation trip-to Italy.  You buy a bunch of guidebooks and make your wonderful plans.  The Coliseum. Michelangelo’s “David”.  The gondolas in Venice.  You may learn some handy phrases in Italian.  It’s all very exciting.
 
    After months of eager anticipation, the day finally arrives.  You pack your bags and off you go.  Several hours later, the plane lands.  The flight attendant comes and says, “Welcome to Holland.”
 
    “Holland?” you say.  “What do you mean, Holland? I signed up for Italy!  I’m supposed to be in Italy.  All my life I’ve dreamed of going to Italy.”
 
    But there’s been a change in the flights plans.  They’ve landed in Holland and there you must stay.
 
    The important thing is that they haven’t taken you to a horrible, disgusting, filthy place full of pestilence, famine and disease.  It’s just a different place.
 
    So you must go out and buy new guidebooks.  You must learn a whole new language.  And you will meet a whole new group of people you would never have met.
 
    It’s just a different place.  It’s slower-paced than Italy, less flashy than Italy.  But after you’ve been there for a while and you catch your breath, you look around and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.
 

    But if you spend you life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.Much love to everybody-Paige and Joe

Monday November 17, 2003

We have a possible donor!!!!!!!!!!!!!!!!!!!

Christopher was diagnosed 1 month ago today, and 1 month later we have hope!

Good news today…..We heard back from Dr. McDonough (Oncologist) from Hopkins.  Christopher’s blood typing has been completed.  A preliminary search was done and came up withno adult bone marrow matches, but 5 potential umbilical chord matches!  This is great news since umbilical chord blood tends to do better in children with a higher potential of grafting. (Please see Hurler’s page for a better explanation of umbilical cord matches).  The five umbilical cords are being sent to Hopkins for more testing. They are looking for 4 of the 6  antigen factors to match but would settle for 3.  It will take about 1-2 weeks for the results to come back from the lab.  The preliminary date for Christopher’s transplant is December 29th.  Hopefully, we will be able to spend Christmas together at home!

We will still be pursuing ERT prior to transplantation We are trying to contact Genzyme the company that makes the enzyme to get insurance approval.  Christopher would be one of the first children to be infused with the drug at such a young age and in conjunction with the transplant.

We are only at the beginning of a very long journey. However, we can start that journey hopefully in December. As Pastor Don said “when you have hope you have everything”.  We have hope. We do not feel alone, for we are blessed with such wonderful people in our lives who will hold our hands as we walk the path. Thank you for all your love. We will continue to give updates as we receive them, and together we will be at the starting gate in December. Please keep the prayers coming and know that every person who views this site has changed our life by showing us all the love and goodness in people!

Wednesday November 12, 2003

Conference Call with Dr. Kahler from John’s Hopkins

We had a conference call with Dr. Kahler today regarding enzyme therapy leading up to transplant. He just came back from a conference in California and talked with many doctors  about Christopher.

  • Christopher has the most severe form of the disease, transplantation is a priority. We will hopefully find out his HLA typing any day, then know if there is an umbilical cell or bone marrow donor.
  • Enzyme therapy prior to transplantation has not  been done extensively on children as young as 6 months old (if it has, there are very few cases 2 or 3 children).
  • The enzyme Aldurazyme was approved by the FDA in April 2003. It has been used for years in England and Australia.
  •  The theory behind beginning Christopher on enzyme therapy ASAP is to keep him healthy. Since his body is making no enzyme, the enzyme replacement therapy (ERT) would help keep his solid organs as healthy as possible until transplantation. It would help his spleen and liver from becoming swollen, and help reduce swelling in his airway (trachea, lungs), common MPS problems.
  • Dr. Kahler made an excellent point about how important it is to keep his enzyme level as high as possible. Even after he has his transplant it could still take a few months for his enzyme level to reach a “therapeutic level”. During this period if he has ERT, we can be assured his enzyme level will hopefully be high enough to maintain his brain and neurological function until his body can take over and start making an adequate level.
  • Comparison: We all have “certain levels” of hormones, etc…in the body that needs to be at a specific range to adequately work in our body. Ex: if a persons hemoglobin is at a low level, they may require iron or a blood transfusion (depending on situation) or else their cells will not receive the oxygen they require. The same is true of the “alpha-L-iduronidase”enzyme Christopher is missing.

Our decision:

We have decided to go ahead and have a pre-transplant/ERT workup done ASAP. This will include: MRI, ultrasound of liver and spleen, cardiac, ortho, and eye exams. God willing we will have an umbilical cord donor soon, if not we will start ERT and pray we are doing the right thing. If we have to wait for a bone marrow donor, we are looking at possibly as long as 6-8 weeks down the road for procurement time. (Please see the  link entitled Hurler’s Syndrome for an explanation of bone marrow transplants and procurement. All words highlighted will be explained). Thus, the longer we wait, the longer their is a chance of neurological damage.

-So once again, one day at a time.

Sunday November 9, 2003

New News from Hopkins!!!!!

Today we heard from Dr. Kahler from John’s Hopkins via email.  He is on his way back from a genetics conference in California and spoke with several MPS doctors.  His goal was to find out if anyone has done any work with introducing the missing enzyme before transplantation.  It seems based on his response that it would be a good idea to start enzyme infusions.  This would not be a replacement for the transplant. It would be done in conjunction with the transplant, and infusions would be given until we transplant. We should be hearing from him in the next day or so to schedule an appointment.

Introduction of the enzyme will assist the body in processing some of the excess Mucopolysacchardies.  This should benefit Christopher by reducing the inflammation in his liver and spleen, allow his hearing and eye sight to continue to develop and clear up some of the congestion and mucous.

Sunday November 9, 2003

Starting to prepare Christopher to go into the Hospital!

My overactive nurse’s mind is concentrating on starting to get Christopher ready to go into the hospital. I have brought home gloves, oxygen masks,  and syringes (obviously without needles)!  I’ve been trying to incorporate the medical supplies along with his regular toys to get him use to some of the new things he will be seeing. My husband frequently asks “Why is the baby playing with anesthesia tubing again?” But, I hope all this will help his transition.

Frequent games we play: Elmo wears a nasal cannula, Snoopy wears a face mask and Christopher “smells the flowers” with an oxygen mask. (I want him to get use to an oxygen mask because he will have to go to the OR and be put to sleep to get a central line.)

 

Big Brother Nick wears a face mask to show Christopher what a doctor looks like

 

Tuesday November 4, 2003

So far no news from Hopkins.  We are waiting on Christopher’s blood work to come back with his blood type and factors.  We should be hearing late this week.

When doing the blood typing they are looking at specific protein factors called human leukocyte antigen’s (HLA’s).  This requires a special blood test where they determine your blood type (A), Rh Factor (+) and specific proteins.  Paige and I would most likely not be a match because Christopher received factors from each of us.  Meaning that Paige nor I would have enough matching factors to donate.  The donor would preferably have the same blood type, Rh factor and as many matching antigens as possible.  The higher number of matching factors the better the chance of the new bone marrow being accepted in the body.

Sunday November 2, 2003

Our Linus “Warm Fuzzy Blanket” Thank you’s of the week go to:

–Mary Kate & John for the beautiful angel from two very special angels!

-Corey & Amanda for making sure our tummies are full

-Marnie for making sure Christopher’s tummy is full & his bottom is dry! Also, for telling me it’s OK to ask for help.

-My ZTA sisters – Your e-mails are wonderful & I appreciate them all. Cassie & La thanks for talking.

-Mr. & Mrs. Miller for the beautiful flowers.

-Dan & Kitty-Thank you !!!!!!!!!!!!

-The gals from Fairfax OR-Thank you for the shoulders to cry on this week. I am proud to work with such a wonderful group of people.

-Meredith for holding my hand on Halloween when things get “scary”

-Becca, just cuz we know you are there.

-Grandma & Grandpa Mig – Snoopy Halloween Doll

-Mema Karen & Papa Lin – All my wonderful toys that light up & “Grandma boot camp”

 

***All the cards & phone calls, they give us more strength every day!

 

**Our angels from the New Covenant class. You leave us speechless, you all have truly taught us all things are possible. We are SOOOO blessed & proud to know you all, and consider you all our family.

 

Tuesday October 28, 2003

Our day at Johns Hopkins!!

We had a very long day at Johns Hopkins today, but learned a lot of information.

Genetics: We met with a wonderful Geneticist named Dr. Kahler. He is wonderful, and has been to Duke and Australia doing research. We also have a wonderful genetic caseworker named Amanda who stayed with us all day. Dr. Kahler says Christopher has the most severe form of Hurler’s he makes NO enzyme at all. So – bottom line- no transplant, no Christopher in a few years. The toxins are already building up in his body, and the sooner we transplant the better. Dr. Kahler is going to a conference next week and taking a photo of Christopher and his history. We feel comfortable and grateful he and Amanda will be guiding us.

Oncology: Christopher will be treated like a cancer patient. He will get 2 central lines for chemo, blood, etc…. There will be 8 days of chemotherapy than transplant. After that we wait as his body builds his immune system back up. There is a 60-75%  survival rate. Their is always the chance he will not survive chemo. But, it is our ONLY option. Hopkins has never done a Hurler’s child, he will be the first one. But, they will communicate with Minnesota who is the “leader” in all this. Basically where ever we go he will receive the same type of chemo, antibiotics, etc….. My mothers instinct is telling me to stay with Hopkins

They took blood today to get a HLA typing to determine who can be a donor. The oncology people will first try to find a match with umbilical cord blood, than bone marrow. Hopefully we will know in 1-2 weeks if there is a match. If not we will have a drive ASAP. Hopefully we can be in the hospital in about 2-4 weeks! We will be in the hospital about 2 months as inpatient (but again, depends on how his blood counts are). Than we will have to live there a month in a hotel or something for about 30 days. Usually they make people stay in the area about 90, but because we are so close to Fairfax we can coordinate care there after the first 100 days of transplant if there is an emergency. The 30 days we are in the hotel (or whatever) we will be going in everyday as an outpatient. Than we will be followed at Hopkins always. We will also be followed by cardiology, opthamology, ENT and orthopedics to make sure no damage has been done.

The oncology floor is so sad, it breaks my heart. Sometimes we feel we are trapped in a nightmare. Please know the kindness we have received from everybody is what keeps us going and we mean that from the bottom of our hearts. We feel like every day God “pops” an angel into our life to let us know that people are there and we will get through this. Thank you Marnie for being our angel today and getting us a 2 month supply of formula! I was very upset, and when I read all the kind e-mails and calls from people it gave me hope. As long as we have hope-I think we have everything.

October 25, 2003

Aunt Lindsay gets engaged! Christopher is blinded by the sparkle so much he needs sunglasses.

October 23rd, 2003

We meet with Dr. Cynthia Tifft at DC Children’s Hospital.  Dr. Tifft is a Genetic Pediatrician specializing in lysomal storage disorders.  Dr. Tifft is optimistic and emphasizes that we caught the disease very early.  Stem cell or Bone Marrow transplant is the way to go. We had blood tests done and skeletal x-rays to determine if any damage to his bones has started yet. We will go to John Hopkins on Tues. October 28 to look at their program. We feel we are racing against the clock.

October 17th, 2003

The results come in from the lab and the diagnosis is Hurler’s Syndrome.

October 13th, 2003

Christopher gets his blood drawn for testing and its sent to Jefferson Medical Labs in Philadelphia

October 10th, 2003

Christopher undergoes a barium swallow to check for reflux.  The Radiologist notices abnormalities on Christopher’s spine and introduces the possibility of Hurler’s Syndrome.  The family meets with the Pediatrician that afternoon and discusses the disease and the testing process.

April 28th, 2003

Family comes home from the hospital and are greeted by our dog Nick.

April 24th, 2003

Christopher is born at 9:38am weighing 6lb’s 12 ounces.

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