We have some questions and some answers.
It seems that Reese is having a “flare” of gvhd. This doesn’t mean that her whole gut is affected, it could be just a small portion. This is what we are hoping for. Her symptoms increased quickly and her steroid dose went back up to the highest allowed, 2. (She had been weaned two weeks ago to a 1.5, and then last Wednesday to a 1.25. She was due for a wean to 1 tomorrow.) We are so thankful that they know what it is and we have a plan which is always comforting. You might be asking, why go all the way back up to the max dose? I asked the same question. Right now, Reese has “acute” gvhd. This happens in the first 90-100 days after transplant. If gvhd strikes after that window it can become “chronic” gvhd, a problem that could follow her for life. What’s the difference? Right now, the T cells that are attacking her are old, donor cells. Cells that were educated to know the donor’s body. That is why they are attacking her gut, they don’t recognize it as their own. The lifespan of these cells is about 90-100 days (we are Day +76.) Her new cells, that are growing now, will only know her body, provided those old donor cells don’t teach them any differently. We want this controlled so this DOESN’T happen. It’s so confusing, way more complicated than I could ever understand, but that is the simple way I see it. The brilliance of these doctors always astounds me. Now, I pray that is the last time I will need to use the words “chronic gvhd”, I pray she will catch a break that this diagnosis will never be made. PLEASE.
The other big problems the doctors are watching right now are TMA (she is still not diagnosed with this, is it TMA? We are hoping it is NOT the case), high glucose from the TPN IV meds (they are thinking about insulin again), and low blood counts. Last night Reese was taken off the blood-count-suppressing-med and it was replaced. Hopefully we will see her counts rise over the next 7-10 days. We want the med to be the cause of the plummeting blood counts, because that can be fixed.
In addition to the “problems”, I’d like to take a moment to recognizing the things that are not going wrong. Each week, a bunch of tests come back NEGATIVE. These deserve to be celebrated, they are not causing problems! Today, I would like to honor the EBV test, which has done us the pleasure of being negative!! (big deal!!)
As for Reese, despite a wild couple of days of changes and concern, she has had some good times, too. She is in a lot of pain but there are always a few rainbow moments. Reese has such a big, clever personality, and we are always so happy to see it shine through the clouds. Yesterday she played in her “band”, which is always a highlight. Matthew (the music therapist) is our lead guitarist (or ukulelis, depending on the day.) Reese loves music. The video attached is a compilation of a few gigs… Reese and the Rockettes, performing toddler tunes.