There is nothing magical about Day +100 other than, statistically, transplant patients have better survival rates if they make it to day 100. It is also the time when, if Ryan is doing well, he can get his Hickman Line removed and, most importantly, we can go home. It feels good to be half way there.
Overall, Ryan is doing well for where he is in the process. Below are updates on a few random topics:
Platelets dropped a few weeks ago from a high of 155K, but have leveled out around 78K. The team is not concerned about it. They often see platelets decrease when a patient has GVHD. Ryan is also on some medications that can artificially lower counts. Once he is further along and off some of the medications, his counts should start increasing again.
ANC has been in the normal range (around 4,500 most days).
Hematocrit has been steady in the 33-35 range. The team told me at his last appointment that they had expected his hematocrit to drop because they have been taking so much blood for lab tests and research, that no person would be able to produce enough new blood to keep up. Again, this is temporary and it is not hurting anything. I have agreed to the additional research blood draws because Ryan had a very rare diagnosis and I think it is important to allow experts in the field the opportunity to learn from him. Maybe they will find something in their research that will help another child in the future. It is the least we can do to pay Ryan’s gift forward.
Ryan is still fighting some skin GVHD. He has been on high dose steroids now for about 35 days. At the highest doses, he had quite a few side effects, so the team slowly began tapering him off of them. However, once the dosage was lowered to a certain point, his skin rash and itching flared back up. I was sure the team would bump the steroid dosage back up. However, to my relief, they offered to try an alternate therapy called “PUVA” (psoralen + UVA treatment).
PUVA is a therapy done three times a week for several weeks. It involves taking psoralen, a drug that makes the T cells that are attacking the skin sensitive to UVA light, an hour and a half before treatment and then laying in a tanning bed with special bulbs for a few minutes. The UVA light then “zaps” and knocks down the offending T cells.
It was really difficult to convince Ryan to get into the tanning bed. I am sure it looks really scary to a 5-year old. Plus, he knew it would get warm and his skin was already itchy and bothering him, so he was afraid the hot bed would make it worse. It took some real convincing, and thankfully the nurse that administers the treatment is really patient and good with kids, but Ryan finally let me lift him in and he stayed still the entire time. He had his second treatment Wednesday and now he says it’s fun and he likes it. I am also seeing some slight improvement in his skin already.
A Chimera was a creature in Greek mythology usually represented as a composite of a lion, goat, and serpent. Contemporary use of the term “Chimerism” in bone marrow/stem cell transplant derives from this idea of a “mixed” entity, referring to someone who has received a transplant of genetically different tissue.
At Day +28, a chimerism test is performed to analyze the bone marrow recipient’s DNA to determine what percentage is the donor’s DNA and how much of the recipient’s DNA remains, if any. It’s not too uncommon at this stage for transplant patients to be 95-98% donor and still have some of their own DNA. In fact, some people never achieve full chimerism, which can create a risk for future graft failure if the original cells start to multiply and take over again.
I realized the other day that I hadn’t received Ryan’s results yet, so I asked and was thrilled to hear “oh, he is 100% donor.” Woo hoo! It’s one less thing to worry about right now.