Ups and Downs

Anna had a great weekend at home, and had been showing some really good progress. Her numbers on Friday were very good and she was feeling pretty good. The steroids definitely had an impact, and given the size of the dosage had been impacting her sleep. Other than that, all things were looking pretty good.
On Monday, she started developing a bit more of a serious rash, which generally is an indication of GVHD -- Graft Versus Host Disease, which is when the new healthy immune system (from the donor) attacks the body - or more specifically the skin, stomach, liver, intestines, etc, etc, etc. By morning, the rash had definitely spread and was pretty visible on her entire upper torso.  We had a scheduled follow up appointment today (Tuesday). The Doctor checked her out, and decided that it was time to step up treatment given that the current regimen of steroids and some other stuff weren't controlling the GVHD. The Doctor wanted to proceed with a new regimen of rabbit serum (yeah, rabbit) administered over the next few days. Yeah, the whole rabbit thing kinda threw me for a loop, but at this point if they said that I should snort rat turds, I'd probably do that (after doing some research, or course). The Doctor's initial preference was to have her admitted as this is a pretty serious situation (both the early/acute onset of GVHD and the symptoms from the serum). After a bit of an emotional discussion, the Doctor agreed that she could start this as an outpatient and see how she handles it over the next few days. So, we're kinda day to day right now with regards to being home.
We always knew she was high risk for acute GVHD, given that it was unrelated donor and 9 out of 10 match (not 10/10), but we were optimistic that we wouldn't head down this path. But, this is where we are and we're not out of the woods yet. I continue to remind myself to keep well grounded, and not let the highs get too high and the lows too low... but today sucked.


kreddy's picture

I'm sorry today sucked.

I'm sorry today sucked. Knowing the risks walking into to all this was good to know; information always helps. But when things suck, they suck. I'm glad Anna can be at home to start the Bugs Bunny treatment. Seriously? Rabbit?

Geek that I am, I found a scientific journal that deals with this topic. Scientists have journals for everything, probably including rat turds.

It's called Biology of Blood and Marrow Transplantation (is the official publication of the American Society for Blood and Marrow Transplantation). The journal focuses on current technology and knowledge in the interdisciplinary field of hematopoetic stem cell transplantation. I looked around more the oracle that is the internet, but too many answers, you know?

So, wish I could help...but I'm praying for you all, and I guess as Elmer Fudd would say, "It's Rabbit Season."

love u all.

(in other news, starting running tonight for my 5th marathon training season with Team in Training - Chicago 10-10-10.)