Rona Updates: Another week, another clinical trial

June 23, 2023

Over the weekend, we enrolled in a second clinical trial which involves taking T Cells from a third party donor, activating them against CMV, and infusing them into Rona to help her body fight the virus while she has no immune system. We are grateful to her doctor who came in on a Sunday to draw our blood and get the ball rolling. (Side note: I 10/10 recommend doing blood draws with a phlebotomist or nurse.)

The team opted to use my T cells since I was the original donor. They extracted the cells on Wednesday in a process very similar to the stem cell transplant. This time the surgeon and I chatted about the Titanic submersible and its $30 gaming controller while he put in the central line, so it was a little more relaxed. Rona got the first dose of cells yesterday and we are hopeful her CMV counts will start coming down by this time next week, at which point we will have a better sense of what has happened to the graft. Her white cell counts have shown little flickers of life this week, which makes us hopeful there is still something there to recover without having to do the conditioning and transplant process again. Maybe.

We were hoping to get five doses of activated cells. Apparently I have incorporated that "fuck you, CMV" energy down to a cellular level and we got a total of 16 doses, which is enough to give her coverage for about nine months assuming the FDA grants us an exemption from the 5-dose regimen (which is likely to happen). This is the second cell storing protocol they've had to rewrite for us. For many reasons, we hope it is the last. 

Speaking of rewritten protocols... 

Outside of physical well being, we have had a big week of working on mental health. After 44 days in a tiny room and very (ahem) vocal opposition to her continued confinement, the medical team has fudged the line on hospital protocol and has started to let Rona sneak outside through a fire exit for 30 minutes a day. Even though she has no cells, she has an endless supply of energy and it's good for her mind and body to move. Last night we went looking for fireflies and she said it felt like "being at home". 

Rona also started her virtual camp this week. She was very excited to see all of the bald heads and hospital beds and I feel very good about what this summer will hold. Between normal camp activities like music, art, dance, drama, and unit time, they also have special guests. Today they have a puppet show put on by Broadway Actors and next week they are meeting some of the cast of the Mandalorian. 

In other news, Rona made an alien sock puppet named Skittles on Monday and she brings him with her to every virtual activity. It's a little reminiscent of Tom Hanks and his volleyball, but whatever gets you through... 

We hope you are all well and that your weekend plans, like ours, involve firefly hunts and fresh air.