Day 12

This morning was rough for Tessa. Her rash has spread over her entire body and was left her swollen and itchy. When the doctors came by for rounds they quickly diagnosed it as GVH (graft vs. host). My heart sunk so fast I got vertigo. I suppose it was inevitable. Virtually everyone who has an allogenic transplant (unrelated) gets GVH. This is her body's white blood cells recognizing her new cells as "foreign" and attacking them. The docs have jacked her steroid dose back up to 2mg/kilo, the original huge dose that we've worked so hard to wean her off of. Sigh. But this is what the first response to GVH usually is. They also prescribed a topical steroid cream. She's covered in thousands of these red bumps with areas so affected they look like huge swollen welts. She's extremely uncomfortable to say the least. It could take 3-5 before the steroids even begin to make a difference, so we have a bit of time before she starts to feel any better. What scares me the most is that GVH is something that can potentially stick around for a very long time. It can become a chronic condition that she will have to deal with for years, or possibly forever. Please don't let that happen. I was so hopeful after such a promising couple of days that this news was all the more painful. But that is how it goes around here, things can change on a dime.

It's hard to feel too badly about your own situation when you live in a place like a stem cell unit. I met a woman this afternoon who has moved onto the unit just a few days ago. Her 12 year old daughter has Downs Syndrome and has been through chemo 2 times before for her cancer over the last 3 years. Transplant is her last line of hope. On the one hand being here is isolating from reality, but you're surrounded by people who have been through hell and help keep you looking outward. Seeing how much suffering is around you keeps you from getting mired in your own situation.

Auntie Katie came by with her typical smorgasboard of culinary joy. It was wonderful to see her, she's always a breath of fresh air. She is one of the most generous women in the world. She went over to the shopping center to see if she could find some big panties just because the ones that Tessa has are chafing her rash. Words are not sufficient to thank the amazing people who make themselves of service to Tessa.

Hoping for a restful night.