Daily Updates April 2003 to March 2004

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.

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.

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.

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.

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!!

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.

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.

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.

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!

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.

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!

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!

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.

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.

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!

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.

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. :)

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.

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.

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.

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.

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).

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.

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.

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.

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!

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).

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!

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...

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.

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.

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

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!

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!

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!

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.

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

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!

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.

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.

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.

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).

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.

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).

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!!!!

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.

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.

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.

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.

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.

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!

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!

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.

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!

Counts: WBC: 2800, ANC: 1980, His ANC has tripled overnight, & his WBC doubled!

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.

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!!!

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.

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!

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!

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.

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.

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.

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.!

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.

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.

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.

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...

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.

-His heart rate is all over the place, and is very high. His pressure is also crazy.

-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.

-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

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.

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!

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).

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.

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.

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.

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......

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......

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.

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.

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.

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.

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.

-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.

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.

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.

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.

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!

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.

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!

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).

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.

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!

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.

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.

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.

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!

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!

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.

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).

**We hope everyone is good. Christopher is watching "Harry Potter" and laughing and I must go hang his 1100 meds. :)

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!

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!!!

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.

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.

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!!!

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!

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!!!!!!

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.

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!

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!

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.

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.

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.

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.

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

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 with no 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!

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.

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.

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.

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

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.

-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.

-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.

-Mema Karen & Papa Lin - All my wonderful toys that light up & "Grandma boot camp"

**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.

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.

Aunt Lindsay gets engaged! Christopher is blinded by the sparkle so much he needs sunglasses.

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.

Christopher gets his blood drawn for testing and its sent to Jefferson Medical Labs in Philadelphia

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.

07/22/09