11 days to go… yes we are counting! I had the opportunity to spend some extra time with my other kiddos this weekend and I am REALLY excited about living with them again! All of us together, where ever we are, in the best gift I could ever ask for. And it’s getting close.
While Reese is healthy enough to live outside the hospital, she is still very fragile. Reese will leave on seven immunosuppressants. That is seven too many. Jakafi (gvhd), steroids (gvhd), infliximab (gvhd), vedolizumab (gvhd, this is the drug that saved her life), ecluzimab (TMA), budescenide (gvhd), and anakinra (gvhd). It is going to take months to wean them all off. The most important is steroids… and she is currently at 0.4. Her physiologic dose will be reached in two weeks. (Her body stopped making the natural amount of steroids that we all have. So once we reach the “normal” amount, we stick there until her body starts making steroids naturally again.) Getting off steroids after seven straight months is HUGE! After the steroids are done, another immunosuppressant will be chosen. My guess is Infliximab or Jakafi. There is an art to this taper, it’s so important and so fragile. We know that Reese will be in danger of a flare from her gvhd. This is why I am so thankful I trust the incredible team taking care of Reese.
Keeping Reese safe is going to be of the utmost importance once we leave the hospital. She is fragile, her bones are so weak from the high dose steroids. So falls and bumps and pushes are dangerous. Next, we don’t want her to catch a cold or the flu or something else contagious. But those aren’t actually our chief concerns. The most important issue surrounding someone like Reese is mold and fungus. The tiny spores that you and I breath in without consequence are EXTREMELY devastating for Reese. This is where we need to be so so careful, and have God on our side, guiding us and keeping her safe in a way only He can.
R- what do you want for Christmas?
Me- I want my whole family healthy, together in one house
R- what else?
Me- that’s all
R- (quietly) you know you can ask for more than that, right?
The video below is one that I took about a month ago, before we started decorating Reese’s room for Christmas. This is HER room, the room she was saved and became whole once again. Room 10 will always hold a special place in our hearts. She came, she fought like hell, she conquered, she left.