"The woods are lovely, dark and deep. But I have promises to keep, and miles to go before I sleep." -
Robert Frost
Elise and I took a quick trip back to NIH in Bethesda, MD this week. We left the house about 3:15 AM on Tuesday and returned about 1:45 AM on Thursday. Can you say jet lagged sleep deprivation?
Elise has been having some patches of eczema on her shoulders and upper arms that seem to appear, resolve and then move to a new spot. It's leaving a pattern of light colored patches on her shoulders and upper arms. I'm told the light colored patches are a normal skin reaction and that the color returns to normal over time. This has been going on since last spring and the Drs at CHLA have been monitoring it during our monthly visits.
About 3 weeks ago she started complaining about a burning sensation in her eyes. It seemed to come on suddenly and didn't seem to respond well to eye drops or any of the normal things you might do.
When the transplant team at NIH got wind of the eye problems they asked that we visit so that their specialists could take a look. Their worry was that she was experiencing graft vs host disease (GVHD), a common but potentially serious (it can be life threatening) side effect of transplants. About 30% of stem cell transplant patients get some amount GVHD. The transplant protocol Elise went through is designed to minimize the chances of GVHD, and usually someone that has gotten this far post transplant without GVHD wouldn't expect to experience it.
So we scheduled an impromptu visit to NIH. I wanted to minimize Elise's missing class so we crammed everything into a day with the Drs and took a later flight home.
The opthamologist put all sorts of dyes and stuff in her eyes looking for "pitting and cracking" that is characteristic of GVHD. And the dermatologists (yes multiple, they travel in packs at NIH) did a biopsy. The good news is that neither specialist found GVHD. Her eyes are apparently responding to an allergen (grass pollen from the football field she marches on every weekday morning?) and the skin is just normal eczema (possibly triggered by a combination of meds and sun exposure).
So a sigh of relief is in order, but mostly we just wanted to catch up on our sleep.
In general Elise continues to do well. She's on the band color guard and also playing on the JV tennis squad. Along with classes and homework, this keeps her very busy. Last weekend she attended the Homecoming dance.
We probably will have our planned 18 month post-transplant visit to NIH in December or January. I'm hoping she can get off all the transplant meds and then we can eliminate the monthly visits to CHLA. The visits provide some amount of positive reinforcement and comfort, but they also take Elise out of school. It would also be nice to spend some money on something other than healthcare.
Elise with Percy
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