Hi all, wanted to update, but haven’t had the words or energy to put in to a full post. But after a couple of texts about results I thought I would just post this real quick.
Beaudin’s b-cells are returning. They are at 20%. This means that the CarT is not persisting for the duration they prefer (at the least, 6 months) and as such it is considered necessary to continue some form of treatment. The long and short is I don’t know much about what all this means just yet, aside from the obvious: this is not what we wanted. But I don’t know exactly what a 20% return means (vs. let’s say 70%.)
Our appointment Tuesday was weird. It was the longest break from Children’s that we’ve had since January 2019 and yet, like always, everything felt normal. Although the nurse came in and said hi and “Oh, wow, Beau, you’ve grown!” and I stared at her and realized I had no idea who she was. That was a joy. Forgetting the nurses! What a pleasure! (bc it means we’ve had time and space to forget.)
I took the above picture of Beau as I watched him straight chillin’ on the hospital bed. He is so comfortable in a setting that is so abnormal to the childhood experience. It’s weird, comforting and disconcerting at once.
We got the results Tuesday afternoon, but have not connected with our team in Denver yet as they are waiting to connect with CHOP and make a plan together. Based on the vibe from Tuesday’s appointment, no one is in a rush, per say, to make a decision. The good (good! good???? good.) aspect of Beau’s situation is that we have time.
And time is good….. except when you are holding your breath.
The rough plan is to boost Beau with his CarT cells again this summer. Our *HOPE* is that the CHOP team will allow that to be done at our home hospital so we do not have to travel to Philly, for an abbreviated 3-week trip. Frankly, I will be surprised if all the pieces (read: red tape) falls in to place that will allow for it, but, hey, that’s what we want. There is no reason it cannot be done in Denver, medically, but because we are part of a study, the fine print is not as straightforward.
Otherwise, back to Philly we go.
Our dear friends are also headed back to Philly for the summer for a new CarT therapy and so inside of not wanting to go to Philly AT ALL, I do have a tender feel about being there with them, and visiting our family friends that we have in Bryn Mawr (a suburb). NOT the way I want to spend the summer, but the silver lining I guess. Or just lipstick on a pig, I don’t know.
More later. Aways more later. I have so much to say about feeling neutral about the recent results, and also exhausted that this will surely NEVER END. And I have a funny post that will some day be written about how silly my ego is as I get pulled kicking and screaming along this path. A post about the invisible strings that connect us in weird ways involving caringbridge and A.L.S. And a lot of other killer content….. if I could just create the time to get it all out.
More later. Thanks for checking in on us. And oh yeah, because everyone wants to know: Beau feels great. Although his last IV IG infusion (to enhance his immune system) left him with a headache so we missed school and hit up the local book store instead.