The good, the bad, and the ugly.
The good. It seems like we can start to put the TMA scare behind us. This morning Reese’s hemoglobin actually went up instead of down and her natural platelets are hanging out in the 50s, both new things since this started mid-July, and improvements! I am taking a moment, right now, to thank God for this win. Thank you for the brilliant minds you have blessed us with and thank you for relieving my little girl of this extra complication. I need to remember that we are blessed.
The bad. Last week on Thursday, Reese weaned steroids from 1.2 to 1.1. We know that 1.2 is her sticking point, where we run into trouble, over and over. We held our breath. On Saturday, she started throwing up, lots of nausea, she couldn’t eat. On Sunday it continued, little to no food, vomiting. On Monday it got much worse, and then better as we ended the day. Then last night she was up THE WHOLE night, vomiting or trying to. Her weak little body, so sick, crying to me that she just doesn’t want to throw up anymore. It brought me back to that one time I had the stomach flu for more than a few hours, the horror of overwhelming nausea. This little girl woke up miserable and it continued into today. The team met this afternoon and they believe it is a flare. Of upper gut this time, not lower, which is usually our problem. Her T-Cells are attacking her upper GI track, and she is getting pummeled. None of her meds make a difference. So what are we going to do about it? Tonight we go back up to 1.3 steroids, again. To squash this uprising. Tomorrow or Thursday they scope her. We have narrowly avoided this procedure many times, and our luck has run out. Now it’s worth the risk.
And the ugly. We found a third string med that cured Reese of her lower gut gvhd, vedolizumab. This is not for upper gut. Our doctors need to find a miracle for her upper gut, to cure her. It has to be out there somewhere. We are trusting these great minds to solve this puzzle, again. And we are buying time as we bump up her steroids to 1.3. Reese needs to get her steroids down, she has been so fortunate not to have consequences beyond the ones we already have. Long term high steroid use is dangerous stuff. I’m scared and I want this nightmare to end.