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:
Labs:
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.
GVHD:
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.
Chimerism:
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.
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