Day 33 PM: joy

Keri writing. The rooms in Pediatric ICU aren't equipped with a computer and even if they were, I am sure that Mina wouldn't let Arne out of her arms tonight. It is actually a great source of comfort to us that even though parts of her body are blistering and peeling, and it is painful for her to move, she still wants to be held. She wants to be near.

In a flurry of a day, we received confirmation that she has acute GVHD, stage IV, but are placing hope in the new monoclonal antibodies, Infliximab and Dicluzimab, as well as the love, care and prayers of our family, friends and community of doctors and nurses at UCSF. We have been blessed.

Her temperature is down and the first blood culture taken after administration of the antibiotic, Vanco, came back negative for infection. If this is the case at 24 hours (after administration), they will administer another dose of Dicluzimab, which we hope will arrest the development of GVHD on her skin. The Infliximab (which targets the G-I tract) was admistered for the second time last night and seems to have helped because she went 10 hours without a bloody stool today, and the volume was significantly lower than it has been. It apparently takes 3-4 weeks (given on a weekly basis) to see results. Last but not least, they increased her morphine levels and after a very painful -- but also alert -- day for her, she spent the latter part of it resting comfortably. She seemed to appreciate her visitors (from the community at UCSF) even if she didn't want anyone to come too near -- even dear Amber -- and enjoyed the Pooh balloon that Anta brought into the room. She is fighting hard.

In the midst of the most terrifying times, there is joy. Thank you for being there. K