Day +32: not much change

Thanks to everyone for wrote in today. It really means a lot to us to see 10 messages by 9 AM and 19 by 7 PM. I didn't even know that many people read the blog! This has been a pretty overwhelming couple of weeks. Dr. Loh doesn't really have much of a role with Mina Brigitta's care these days, but she stopped by to visit. She took one look at Mina and said "Oh my God! What happened to your skin?!?" I kind of feel that way too, and it really helps to know that there are so many people who care so much about our little girl

As every day seems to, today brought some positives and some negatives. The positive was the dermatologist's visit. She was very encouraged that the rash didn't seem to be spreading. The newly affected areas have continued to evolve, getting larger, darker and angrier, but the areas that were affected last week are getting better. The color is gradually turning from a deep red to a light brown that indicates healing. If the agent was indeed the Septra which she got over the weekend, the dermatologist thought that the peak of the reaction probably occurred Sunday or Monday, and that we should see slow improvement from here. She also said the cell damage seemed to be pretty shallow, meaning that she shouldn't have much in the way of long-term scarring or elasticity problems. As of now the biopsy isn't back yet, but this doctor told us that the drug reactions and GVH look similar, so the biopsy might not be able to tell us definitively which she has. They will probably keep treating both; she'll start receiving IV immunoglobulin daily instead of every two weeks to as a treatment for Stevens-Johnson Syndrome, and will probably receive another dose of the diclizumab antibody as a treatment for GVH.

The negative came later. She had a quiet afternoon, but around 5 PM had a very painful stool with a large volume of blood, and then another at about 7 PM. There could be any number of reasons to have bloody stools, including low platelets, stress from the drug reaction, a c diff. infection, or continued problems with GVHD. This is pretty discouraging, because it seemed like her gut had been improving. They're just going to support her for now with transfusions of blood and platelets, and watch to see if it evolves. If it gets any worse, the G-I specialists may want to do an endoscopy to see if they can see anything. She's due for another dose of the Infliximab tomorrow, so hopefully that will help.

All in all, she's been quite stable, and for that we are very thankful. They might have actually thought about moving us back up to BMT tomorrow if this gut issue hadn't cropped up. Now I suspect it'll be a few more days. Thanks again for all of your thoughts and prayers.