Rona Updates: Baby's got a brand new (three) bags of stem cells coming her way

July 6, 2023

Earlier this year, every time someone asked me how I was doing, Sir Elton John popped into my head singing, "I'm still standing..." (Let's be real. I'm a parent. It was Johnny from "Sing".) I think we are now officially in Chumbawamba territory, bordering on Rocky Horror's Time Warp. It's getting weird up in here. 

It was another doozie of a week in our teeny, tiny hospital room. It started with a  baby ANC and hopes of re-engraftment. It ended with an antibiotic-resistant central line infection, massive jump in CMV viral counts, and a second go at transplant.  

It looks like Rona has cleared her bacterial infection (friendly reminder: please complete all courses of antibiotics fully when they are prescribed), but the fever from the infection gave the CMV an opportunity to shoot up again this week. Rona is still asymptomatic from the CMV, so after the antibiotics kicked in, she was back to camp and loudly protesting her ongoing confinement. The new nurses all came running in during the first protest of the week, and the team who has been treating her over the past two months stayed put and told me afterwards they are glad she's feeling better.

When I think about Rona's body and what should be happening versus what is happening to her clinically, I think of Jim Carey's dream montage in "Dumb in Dumber". She pops up, wipes the blood from her lip, and jumps back into the fray. If you know, you know.  

The transplant team came up with a new course of action last night. As you may recall, I had a record number of stem cells collected and we have four full doses for her in the freezer. We are going to use one of those bags today to give her an immune boost, give another dose of T Cells next Thursday, and then give a second bag of stem cells next Friday. The hope is that, at a minimum, the extra immune support from the two bags while we wait for the T Cells to kick in, which could take a few weeks, will help to get her viral counts under control. 

Even if this gamble doesn't pay off, when the counts do come down -- and her team has assured me that they will -- there are two other bags of stem cells waiting in the freezer. Worst case scenario on the engraftment front is that I'll go through another round of shots and stem cell collection for a traditional HAPLO transplant later this summer. 

It doesn't look like I'll get my birthday wish of an ANC and cocktails on Monday, but everyone is still feeling positive that both of those things will happen next year. In the meantime, we wait and pray.