When did you get admitted for the transplant? January 16th
When was the transplant? January 24th
When did you leave the hospital March 20th.
When was day 100? May 4th
When did you go back to Children’s? May 16th
So now what?
Graft Vs. Host /New Cells are working –yeah. They don’t recognize their new body-boo
This is a very weird space. Here we sit. The line is gone so things like swimming are possible. (Only in the deep end, only when kids are not in the pool, only, only, only…..)
This is about the time everyone sort of thinks life should return to normal. It feels like it should. It feels like there are not big goals and accomplishments and on-line classes, returning to work, big trips, back to the real world. I think both of us feel like that should be the case but there is this big cloud. The GvH cloud that seems to be hovering. It is like we are stuck between floors and there is no one on the other end of the line. They will be there soon, but not now.
Mid-August she completes her Prednisone taper. We hold our breath, a collective breath holding. Did it work? Will the GVH come back? Will the new cells have learned to love the new body? Will it be time to really see and start to taper off the tacrolimus? Lots of questions and no way to know the answer.
So the answer to “So what are you doing?” is waiting, watching, preparing, staying close to home. Wondering, hoping, dreaming, investigating, sorting, purging, quilting, jamming, gardening, even reading. Half-way through.