"Difficult roads often lead to beautiful destinations." - unknown
This week was Elise's "Second Birthday" - the 2nd anniversary of receiving her new stem cells in the transplant process. She is doing great and we're all quite happy about it.
We all (Elise, Becky and myself) went out to NIH this week for her 24 month follow-up checkup. This is a big deal because it marks the point that she transitions to only needing checkups annually. Basically she's done with the transplant protocol. It's really hard to comprehend. They'll continue the annual checkups till her 5th anniversary.
At NIH they drew 19 viles of blood, did a chest CT scan, did a series of pulmonary function tests (PFT), and performed a once-over ("breath deep"). Dr. Elizabeth Kang, her transplant lead, said everything looked good. Her immune system was "coming in" the way they'd anticipated/planned and she was pleased with the results. Of note, Elise's PFT scores had improved, probably due to her running distance this year. And I've never seen her blood work look so good (after so many years you get good at reading blood test results). In general, things are looking pretty darn good.
Since my last post 6 months ago, there has been at least one health issue that's come up. Elise decided to run distance events with the High School track team. I was very proud of her since she decided to do this all on her own - none of her friends were doing it and in fact she ended up being the only girl running distance on the team. She wan't fast but I could see she was getting better every week. About a month into practices she started getting a rash on the backs of her legs. It spread to the fronts and eventually also her arms and a little on her torso.
We looked at what had changed in her environment at the time the rash started and decided the most likely culprits were: 1) the grass field the track team stretches on; 2) the cats she'd gotten several months earlier; and 3) minor medication changes her non-transplant physicians had made.
We tried to mitigate the grass issue by having her stretch on a towel and even asking the coach if she could strech elsewhere. This didn't seem to work at all so we decided to pull Elise out of track a few meets into the season. That seemed to help a little, but didn't totally solve the issue.
We tried all the conventional treatments and her pediatrician even gave her two courses of 3-day steroid burst to break the cycle. Nothing seemed to have a lasting result. Eventually the dermatologist put her on a two week course of stronger topical steroids. That seems to have helped immensely. NIH said it wasn't graft vs host disease (GVHD) and probably wasn't related to the transplant, but they also said her lyphocyte levels aren't 100% yet and it could be some (hopefully temporary) reaction as they come in. Apparently transplant recipients have occasional transitory weirdness with their health in the early years following transplant. Hopefully this is the last of these for Elise.
Truthfully I'm still just a bit on edge every time a health issue comes up. When I hear her cough or get up in the middle of the night to pee my little alarm bells start ringing and I have to remind myself that things have changed. I guess you can't go for so many years knowing that minor infections can turn life threatening without some residual effect. Some sort of conditioned response I guess. In any case, Elise just wants to move on with life and put this all behind her and I can't say that I blame her.
Just a week before we visited NIH Elise was finally able to put her hair in a ponytail. She says she's never cutting her hair again. I can't believe how strong she's been through all this stuff like losing her hair, eyebrows and eye lashes. I know it's left some lasting effects, but she's become such a strong person that I sometimes forget how I would have responded under similar situations when I was 15 years old.
Just a week before we visited NIH Elise was finally able to put her hair in a ponytail. She says she's never cutting her hair again. I can't believe how strong she's been through all this stuff like losing her hair, eyebrows and eye lashes. I know it's left some lasting effects, but she's become such a strong person that I sometimes forget how I would have responded under similar situations when I was 15 years old.
So we're all moving forward. Elise is looking forward to learning to drive and getting her license. She's got a part time summer job at the child development center. And she's planning to play tennis and run track again next school year. She's excited about the color guard starting again and starting to talk about the types of things she might do in college. All perfect things for a 15 year old to be doing and talking about. It's a good place to be.
