"Maybe Christmas, the Grinch thought, doesn't come from a store." - Dr. Seuss
Well we made it to 18 months post-transplant with no recent issues. The transplant team wanted to see Elise for an 18 month follow-up visit so we made a quick trip to Bethesda, MD. The day started with 18 viles of blood tests followed up by a CT scan of her chest and abdomen. Then we did the standard visit with the medical team.
Her blood test results all look excellent. The chimerism test will take a week or two to come back, but the last one was excellent and there's no reason to think this one will be different. Dr. Kang was out of town so we met with Dr. Harry Malech, Chief of NIH's Genetic Immunotherapy Section. He said he was happy with Elise's progress. They seemed particularly pleased that she continued to have no GI problems. Apparently this has become a key reason to undergo a BMT for those with CGD although they aren't 100% sure why the BMT seems to cure this particular problem.
We asked about getting off the Acyclovir and blood pressure medicine but the medical team wanted to defer that decision to Dr. Kang. Hopefully when she returns Elise will be able to go off those. That will be the last of the transplant medications. She'll likely need to continue the hormone therapy until she's 50 since the radiation and/or chemo seems to have shut down her ovaries (a near-universal side effect). We'll see the pediatric endocrinologist again in January, but I doubt there will be a change to that verdict. There's a slight chance the ovaries will kick in again but won't know unless/until Elise goes off the hormone therapy to try to get pregnant later in life (no time soon!)
The day finished with Elise getting 6 (!) vaccinations. With a new immune system she's forced to do all the vaccinations over again. They did the first round at 12 months but she was under anesthesia for a colonoscopy when they did it. This time she just had to endure 6 separate needle sticks. But as usual she was a trooper.
Our visit with the medical professionals was quick. They didn't find anything that made them schedule additional tests so we rescheduled our flight home a day earlier than planned. That made both Elise and I happy as it's Winter school break and neither of us really wanted to be away from home. So we caught an early flight and were home less than 48 hours after we left.
Our next scheduled visit will be at the 24 month post-transplant point (~ June '16). After that I think they transition to a once-per-year schedule for the following 3 years. And then she's done at NIH.
I can't think of a better Christmas gift than to know my daughter is healthy and happy.
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