"My favorite animal is steak." - Fran Lebowitz
Elise and I made a quick trip out to NIH in Bethesda, MD for a follow-up appointment. The medical team had contacted us and asked to see Elise since our "6 month" follow-up was done a little early. We managed to sneak into and out of the east coast between storms so we missed the intense cold (aka "the Siberian Express") they've been experiencing this winter.
Elise had the routine battery of blood tests and exams. Everything is looking really good, with her neutrophils and all the blood components rising as anticipated/hoped. What's remarkable to me is that some of her counts are better than they've ever been. For example her platlet count is well above 200 - I've never seen it that high in the "normal" range. It's all pretty exciting even if the progress seems glacially slow.
In addition to the standard exams, she also saw a pediatric endocrinologist and also an opthamologist. The pediatric endocrinologist confirmed what the Dr at UCLA had found ("preliminary ovarian insufficiency") but stressed that they really have no way to gauge who's ovaries will recover normal function and whose wouldn't, so she said we shouldn't count out a full recovery. I don't think Elise is concerned one way or another.
What the endocrinologist did confirm for us was that Elise probably won't grow much taller. She's about 4' 8.5" which is less than the 1st percentile (less than 1 in 100 people are shorter). She may gain another inch or two, but the interruption in her growth (probably from colitis and meds) is most likely permanent. I guess we'll need to start looking for cushions to sit on while driving...
Elise had a consult and several tests with an opthamologist. She has been complaining about sensitivity to light and the eyes can be effected by GVHD so they wanted to take a look. It's all good news: no GVHD and her eyesight is essentially 20/20. The sensitivity is probably just due to allergies (the warm and relatively wet winter has led to lots of early wildflower blooms in the desert where we live).
Elise was a little disappointed with news from Dr. Kang, the main transplant Dr.: no cats until later. Elise has been jonesing for a cat and was hoping that she'd been allowed to get one, but they can spread toxoplasmosis from their litter boxes so no joy. On the plus side, Dr. Kang said she could start horseback riding which is something that Elise has wanted to do.
Elise's weight is back where it was before transplant and so Becky and I are starting to pull back from the "eat, eat" mantra. I'm sure Elise is a little relieved by that. Her hair is filling in and she's occasionally going without her bandana, although she still seems self conscious. I'll bet she will lose the bandana in the next couple months as her hair fills in. It's much darker and thinner than before, but I'm told the color and consistency change in the first couple years.
What the endocrinologist did confirm for us was that Elise probably won't grow much taller. She's about 4' 8.5" which is less than the 1st percentile (less than 1 in 100 people are shorter). She may gain another inch or two, but the interruption in her growth (probably from colitis and meds) is most likely permanent. I guess we'll need to start looking for cushions to sit on while driving...
Elise had a consult and several tests with an opthamologist. She has been complaining about sensitivity to light and the eyes can be effected by GVHD so they wanted to take a look. It's all good news: no GVHD and her eyesight is essentially 20/20. The sensitivity is probably just due to allergies (the warm and relatively wet winter has led to lots of early wildflower blooms in the desert where we live).
Elise was a little disappointed with news from Dr. Kang, the main transplant Dr.: no cats until later. Elise has been jonesing for a cat and was hoping that she'd been allowed to get one, but they can spread toxoplasmosis from their litter boxes so no joy. On the plus side, Dr. Kang said she could start horseback riding which is something that Elise has wanted to do.
Elise's weight is back where it was before transplant and so Becky and I are starting to pull back from the "eat, eat" mantra. I'm sure Elise is a little relieved by that. Her hair is filling in and she's occasionally going without her bandana, although she still seems self conscious. I'll bet she will lose the bandana in the next couple months as her hair fills in. It's much darker and thinner than before, but I'm told the color and consistency change in the first couple years.
We're schedule to go back to NIH in June for the 12 month follow-up. They've be doing a bone marrow aspiration (ie taking a sample) and also a colonoscopy so we'll be in Bethesda for a few days.
A couple small but good things are that Elise no longer needs to wear the mask at the hospital. She also has changed to monthly vs biweekly visits to CHLA for follow-up monitoring. Yeah!
A couple small but good things are that Elise no longer needs to wear the mask at the hospital. She also has changed to monthly vs biweekly visits to CHLA for follow-up monitoring. Yeah!
Elise was initially bummed when she found that Harry's Tavern at Dullas had closed. We typically had stopped there when flying in for NIH visits while we waiting for the shuttle bus. But the disappointment was short lived: the restaurant that replaced Harry's, District Chophouse, had steak and so we split a New York cut that was awesome. I recommend it if you're stuck at Dullas.
