And Elijah has always taken the road less traveled...and sometimes the road not yet forged. And so, we have let go of these markers and allowed Elijah tell us where his journey will lead us. As often is the case with a bone marrow transplant, there are many "two steps forward and three steps back" moments. Just as the doctors talked of discharge, Elijah has once again started with persistent fevers. His eyes are very dry and his counts are down (2.1 wbc.) The rash has increased all over his body and he has a purple hue to his skin...all signs of graft vs. host disease (GVHD.)
There are two types of GVHD--acute and chronic. In summary, chronic GVHD is the really rough stuff. Acute GVHD which usually occurs within three months of the transplant, usually responds to treatment well. The doctors are not saying definitively that Elijah has acute GVHD but they are treating it as such and it seems to be pretty evident. He is feeling pretty rough again.
Mark went to the hospital this morning so he could have some time with Elijah and I could spend sometime with the kids at home. We have had a really nice day. The weather was beautiful and it was good to get a taste of home. There are lots of details to take care to help things run smoothly for the start of school...but I resisted the urge to organize and do paperwork while I was home. I just wanted to give the kids some time with their mom--we went to the park, read books, talked, and just hung out at home. It was good for my soul to hold my babies, but it is hard to be away from sweet Elijah as he is struggling. Tomorrow, we will make the switch and I will head back to the hospital while Mark holds down the fort at home.
I have spoken with parents who can not take time off of work to be with their children at the hospital. Many carry the health insurance coverage and can't afford to lose that in a medical crisis. My heart broke to talk to a parent who has to leave the hospital on Sunday evening and not arrive back until Friday night because of her employment. Her husband has a dairy farm and cannot leave it to be at the hospital either.
|Snuggling with sweet Isaac is always a day brightener!|
We have not received any results of the biopsy yet. I will keep you updated.