10/21/07

Please See Our New Page Transplant Pictures!!!!!!

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.

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.

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 24x7.  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: 1980, His 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 call