Today Reese had a race with Poppy and “won”. Yes, it was a running race. This little girl is running! She will tell you her new strength comes from her avid stair climbing. She is definitely becoming more mobile everyday and she has the BEST proud smile when she does something new (like stepping up on the bathroom stool by herself to wash her hands. The independence is so exciting!)
Our yellow house is in the 15 day weather forecast! I’m not saying that I prefer March IL weather to CA, but I love looking ahead and knowing this is where we will be. I’ll take snow if it means I can be HOME. We are all so excited to see our house. I remember turning in the car last April, to watch it fade away in the distance… the feeling was powerful and it’s vivid in my memory. The pain and horror, the wondering. We have to be back, together, as a family. I will never stop being grateful that my family is alive and thriving.
SO many things need to happen to deliver Reese to her yellow house safely. From appointments to meds, medical equipment to home safety. A lot of people, here and there, are helping to make this possible. When we arrive home we will have freedom… but not free time. Reese will continue to be on some sort of isolation, which means someone (mostly me) needs to also be home with her, 24 hours a day. So I am trying to organize in my head how this will look. We are making sure our house is a “safe” place for Reese to go home to.
Reese is doing well this week. She is eating a little more and feeling pretty good. As you know, we took off her TMA infusion and so far she is FINE. This is huge, and an incredible blessing. I don’t like to think about what could have been… you won’t get anywhere thinking that way. But in some cases, like this, I know what could have been. Thank God for our doctors and for keeping Reese in his protection.
We are tapering another immunosuppressant: Anakinra. Reese has received a shot every night for months. You know Reese, she takes it like a champ, but it’s still a shot every night. And it is suppressing her immune system by design. We moved to MWF this week, and if she handles the taper well, it will go off, too!! This taper followed incredible GVHD lab news. We track her GVHD using a lab called ST2. (I can’t tell you anything about this except that it measures the amount of GHVD activity in Reese.) The level was >100 (the highest) always, since we first checked it last summer. In Dec and Jan it went down to 80s and 90s. Feb 28 it was 55. (Normal is <30.) This is a big improvement and it happened while tapering all of these immunosuppressants!! A BLESSING!! I dreamed about these moments for months, and they are happening.
More in the next few days!