Rona Updates: We have liftoff!

June 3, 2023

The big news from this week is that Rona is starting to make cells, which is great news. It looks like she is engrafting in reverse order to what she's "supposed" to do, but anyone who knows her knows she's always done things her own way, so it's all par for the course. The definition of engraftment is three days in a row of a specific count on a specific cell line, and that one is just moving a little slower than the others. Thus, we don't yet officially have confirmation of engraftment, but her team is pretty confident official engraftment is imminent and her body is just doing this to remind us that the job of our children is to cause us undue stress.

Most importantly, Rona is feeling great. She was having a dance party while brushing her teeth at 11pm the other night and said, "I feel great. I think it's because I have so many cells!" She has also started jumping off furniture this week and telling us we can't yell at her because "I have enough platelets." Her doctor explained that while that's true, if she hits her head, she'll need a CT scan, so she may want to chill out. I suspect he may just have encouraged her to keep going because he told her how she'd get to leave this room for the first time in 26 days. 

While everything is going well, this has still been the hardest few weeks of our lives. Rona is, understandably, going stir crazy. She's doing a lot of Outschool classes and has restarted tutoring. She's also up for Facetime and Zoom play dates, but struggles when she sees groups of friends together or doing things that remind her of what she's missing out on. It's a delicate balance that we are still trying to figure out. The team here continues to be amazing and they are working on getting her into a virtual summer camp for transplant kids, which would be incredible for her in so many ways, not the least of which would be connecting with kids who understand this part of her life.

We have finally reached the stage where medicines are being pulled, wires and monitors are being taken out of the room, and we get two whole four hour stretches (one in the afternoon and one between 3-7am) without people coming in and out at least once every 30 minutes. The dietary team has signed off on feeding tube removal because she's hitting her calorie targets on her own every day, but we are going to leave it for a while longer in case something comes up that requires a tube. No one, including Rona, wants to go through that placement a third time. 

We are trying to focus on each little win, which has included the residents changing how they present her case during rounds from "Our 5-year-old with Severe Aplastic Anemia" to "Our 5-year-old with a history of Severe Aplastic Anemia" this week. It's the little things. 

We hope you all are well. Thank you again for all of the well wishes and support. We feel you rooting for us.