Rona Updates: We have a six year old

September 1, 2023

Yesterday we rang in Rona's sixth birthday. Earlier this summer, we were told this would be a day we may not see so it was a day of celebration. To mark the occasion, we had a virtual meet and greet with Rona's favorite internet celebrity dog, Doug the Pug, had a steady stream of visitors from Rona's in-patient and out-patient care team fans, got her "dream cake" delivered by a chorus of singing medical professionals, and played games with some of her classmates and friends from the Aplastic Anemia community on Zoom. 

The fact that she put on a full face of makeup and a fancy dress for the party is made all the more remarkable by the fact that, after a weekend of playing for the first time in months, Rona was rushed to the ICU Sunday night because her oxygen fell rapidly. There is no clear new reason for the drop in her oxygen counts so the working theory is that the viruses we already know about are wreaking havoc and -- in a pleasantly normal turn of events -- Rona has asthma, and the playing she did over the weekend caused an exacerbation. Apparently, Rona playing for 30 minutes is the equivalent of me running a marathon, given her current status. She's on a few meds that need a couple of days to kick in and should be breathing a little easier, though likely still with the help of some oxygen, sometime next week. 

The visit to the ICU may actually have been a (literal) lifesaver. Rona was due to be intubated for a radiation simulation at 8am on Monday. The general consensus is that she would not have been extubated and, thus, would not be eligible for a new transplant. Thankfully, Rona was able to channel all of her cooperative energy and complete her simulation without intubation and so will not be intubated for the treatment either. 

Our time in the ICU has not been nearly as terrible as we thought it would be. A lot of good things have happened since we got here, including Rona coming off of her pain meds, having better sleep and more energy, and seeing rapidly dropping viral counts. The biggest win was that Rona started making white cells again here and there. With the need for oxygen support, our window to transplant is officially closing and we can't wait for too long to see how this graft does. If she isn't fully engrafted by Sunday, Rona will re-do chemo and radiation for a third transplant next week. For this transplant, we will use Samtubia's cells and we will not manipulate the donated cells in any way. While there is no guarantee she will engraft, his cells and the type of transplant her doctors will perform (the Johns Hopkins unmatched donor protocol, for those who are interested) should do the trick. Third time's the charm, right?  

There's a lot going on and several moving pieces. I'll try to check in post-transplant to give an update, but it may be a while before I'm able to send another note. For a variety of reasons, Samtubia will be under general anesthesia for the collection next Wednesday. Rona will have chemo starting Sunday, radiation next Wednesday while Samtubia is in his procedure, and will receive the cells next Thursday. Please keep up the prayers and good juju as we head into next week.