Day +64: a step backwards, or just consolidation?

After many days of progress, though slow at times, it's hard to know what to make of today. Mina Brigitta woke up at 4:30 this morning and wanted to read a book. I talked her into a video instead (only because it was 4:30, mind you), and she fell asleep again about half an hour into Charlotte's Web. But then she didn't wake up again until 7:30, when it was time to start getting her ready to take her neoral. She got her anti-nausea medicine, but I couldn't convince her to eat anything. So we gave her three 10cc syringes of milk in addition to the neoral. She kept it down, but wasn't much interested in food all day and told me a couple of times after prompting that her stomach felt "blah" (which is the word we use for throwing up). Also, she had a poop at 4:30, again at 7:30, and again at 10:30. The first two seemed normal, but the third one had a spot of watery green, which was something I had hoped never to see again. She didn't poop again during the day, which was kind of a relief. But the other thing is that the rash on her legs still hasn't gone away, and today it seemed a bit redder and more raised. Still small and appearing to heal quickly, but a bit worse than it's been in quite a while.

Dr. Horn said the green poop just means things were moving quickly through her system, which could be from a number of causes, of which GVHD is of course one. She also agreed that her legs looked worse. Her summary is that there are some subtle signs that we need to keep an eye on, but nothing that makes us want to change course just yet. They did put her on Cellcept today, but that's mostly to give her some coverage while they continue to taper her steroid dose. I expect they would reconsider the Infliximab dose if she continues to have gut symptoms, but hopefully she won't.

Otherwise she seemed just fine today. She had a lot of energy in between bouts of wanting to be "up with Dadda". They disconnected her from her IV for the first time in a long, long time. It felt great to have her "free from the pole". It meant she could put on her shoes and walk around the room, and we could go out into the hallway and run around. I would hide behind a desk in the nurses' station, she would come running down the hallway, and I would jump out and grab her. I use the word "running" loosely, of course, because she still is pretty wobbly and walking with a noticeable limp, but she had a great time and got some good exercise.

Kind of a confusing set of signals. There's some evidence that some GVHD may be creeping back. We are obviously hoping that's not the case, but it wouldn't be too surprising given how severe her earlier bout was. The treatment is more immunosuppression, so that's obviously worrisome. On the other hand, she has a lot of energy so maybe it's just the meds that are making her nauseous. Only time will tell, I guess.