Rona Updates: Still waiting...

August 9, 2023

My updates have been spaced a bit more because we are still in a holding pattern. We did get some good news on the viral front this week. Both Rona's CMV and Adenovirus counts are around 40K -- as a reminder, they peaked at 1.2 million and 180K, respectively. As the viral counts have dropped, she has been more up for calls with friends, participating in activities, and trying bites of food here and there. It's a major improvement from early July. 

Because the CMV appears to be responding to a medication, we are going to switch the T Cell infusions from those targeted at CMV to those targeted at Adenovirus. I'm being collected tomorrow for those T Cells and she'll get them on Friday. This will be my final cell collection. 

As I'm being collected, Rona will be getting the last of my donated stem cells. Early last week it looked like she was maybe engrafting, and then her viral counts both shot up and those flickers stopped. With the drop in viral counts, her team wants to give her a boost earlier than they normally would to help push for engraftment. If Rona doesn't engraft from this dose of cells by Day 40 (today is Day 19), they will switch donors and see if Samtubia's cells are stickier. The sheer fact that we can discuss a Plan B at this point, is a major testament to how far she's come in the last few weeks. With that said, though Samtubia would love to be her donor, we both fervently hope we don't go another few weeks without a graft.

On another note: We have been so touched by the outpouring of love and support from you all over the past few weeks. We have had people bring us holy water, add us to prayer lists, hold prayer circles to send healing energy our way, bring home cooked meals, fancy snacks and much-needed wine, and just remind us to take five minutes to breathe. We hope you will never be in a position to understand just how sustaining and grounding those things can be. Thank you for keeping us afloat.

One last request: Please keep up the prayers and positive vibes as we head into the next couple of weeks.