"Start by doing what's necessary; then do what's possible; and suddenly you are doing the impossible."
- Francis of Assisi
I haven't written an update recently. Spring has sprung and summer is upon us.
We made it through the Spring with no incidents. There was a lot of sniffling and sneezing going on likely due to the overabundance of wildflowers here in California's high desert. It's a drought year in CA, but our little town got higher than normal rainfall and with it came a lot of wildflowers. And there were some coughs and eczema, but so far no GVHD (knock on wood) or other serious complications. The hormone therapy seems to be doing it's thing and the pediatric endocrinologist doesn't want to see Elise again until January.
As you can see Elise's hair is slowly returning. It's still very fine and not very dense but it seems to be filling in gradually. She shed the bandanas towards the end of the school year after my sister Carla trimmed it up a bit. She told Elise that the bandanas may actually be keeping the hair from growing out by rubbing the delicate hairs off. Elise gets stares from adults and small kids, but most of her peers don't seem to pay attention.
The end of the school year was chock full of activities. She "promoted" from middle school (8th grade) to high school at the end of the school year. She's done well this year grade-wise despite missing the first quarter. She even got several A's including in honors math (although she's quick to point out that it wasn't algebra that many of the better students were taking - that was just a bridge too far this year).
This week she had her 12 month follow-up visit at NIH. They did a bunch of blood work (15 viles), a pulmonary function test, an echocardiogram, a CT scan, a colonoscopy, and a bone marrow biopsy. The Drs said everything was looking good, in fact the GI specialist said her colon looked "pristine". This latter is a relief since the damage she had suffered from several bouts of colitis was the main tipping point for deciding to go forward with the stem cell transplant. Her bloodwork was also impressive - at least to me. I'd never seen her blood counts so high, nearly everything was well into the "normal" range. In the past her WBC, RBC, HGB, and platlets were borderline low at best; now they are all well into the normal range.
They won't get the chimerism test back for about a week. It measures how much of her immune system is the new system vs the old system. In her case they want the new system to ramp up gradually so that she avoids GVHD. This is very different than someone with, say, leukemia where they actually get some benefit from GVHD (it helps kill off any remaining diseased cells). So far it's gone well and we anticipate a good result. If it is good then she can stop taking the immunosuppressant (sirolimus) and other supporting medications. Elise is really looking forward to that.
While she was still sedated following the colonoscopy and the bone marrow biopsy, we'd arranged to get her first round of immunizations. She has to go through the whole series that kids go through because she has a new immune system. So she had SEVEN shots split between her two arms! Between the shots and the bone marrow biopsy (which requires a large needle puncture to the pelvis), she was pretty sore Thursday night and Friday morning.
We made it home from NIH late last night. We're all looking forward to our upcoming vacation at Newport Coast. It will be particularly special for Elise since she'll be able to get in the public jacuzzi pool this time. Because of the CGD we haven't let her go in jacuzzi's until now. It may not seem like a big deal, but when all the other kids are doing it and you can't, well it just highlights that you're somehow different. Well not anymore.
Oh and the best news (from Elise's point of view) is that her doctor agreed that she can now have a cat. While she's been recovering from the transplant we couldn't have a cat in the house (due to germs from the litterbox). She's really excited about the prospect of having a cat.
