10/27/18 BMT Day +178 CMV & TMA

Our doctor is on rounds this week, Chris Dvorak. The doctor who is a huge part of the reason we are in San Francisco for this journey. It had me reflecting on this decision with my nurse today and telling our story. As you know, we also traveled to Dana-Farber in Boston for a second opinion last winter. But, on Jan 26, Chris and I flew to California to hear the results of Reese’s UCSF 500 testing. (This is the test that finally diagnosed Reese’s mutations, after previous testing was negative.) Did we need to fly across the country to receive these results? Well, no. But we wanted to personally meet the doctor who was advising on Reese’s case, Mignon Loh. Mignon Loh is an exceptional oncologist, but what moved us is her work specifically on JMML. As I’ve said, this is an obscure leukemia, not as well studied or seen as others. If you do any research on JMML you will find three names over and over. Mignon Loh (our oncologist), Chris Dvorak (our transplant doctor) and Elliott Stieglitz (researcher.) We knew this and we wanted to meet these great minds, and we did, on this trip. As we sat with Dr Dvorak in the little pediatric office, we learned more about his incredible passion for JMML and for improving the success rates of this terrible disease. His ongoing research in the BMT world has changed Reese’s journey, and I pray that the research that Reese and Quinn are participating in will help many children with JMML in the future. When we left we knew that we were uprooting our family. Our home hospital, Lurie, is a fantastic hospital, full of great minds and a BLESSING to have in our backyard. We are so thankful. Reese will continue her care there when we return to Chicago. And in the meantime, San Francisco isn’t that far, really, and like I’ve said… if the JMML experts were on the moon, well I’d be writing to you from a space station right now.

So, what is the latest plan for Reese? We know that Reese is complicated and that her case tests even the greatest minds. Well, our doctor is mixing things up a bit and trying to get things moving along for her. This involves a very specific, not yet FDA approved, study on CMV. Her CMV reactivation has been haunting us since May and we believe that this pesky virus is the cause of some of our problems right now (and quite possibly what will keep us in the hospital longer, ugh.) Most people have had CMV in their lifetime, it’s a virus that probably made you feel a little tired, maybe a sore throat, that you barely remember. No big deal. But, it matters A LOT in the transplant world, because it lives in us and reactivates and causes problems. This is because she doesn’t have t-cells that keep it in check. You do, so it’s there, but not active. Reese’s actual CMV levels are very low right now… but doing damage. This damage is in the form of TA-TMA (our doctors believe the CMV is a contributing factor now) as well as damage to her kidneys from the toxic meds that are being used to control it. I’ve written before that our choices for treating CMV are ganciclovir (the count killer) and foscarnate (that is really hard on the kindeys.) Well, she went on ganciclovir for two weeks last month until her counts fell too much.. then we switched to foscarnate for the past two weeks. Now foscarnate is causing too many problems so we will switch again until her counts tank… and so on. Such a “little” thing causing so many big problems. What else are we doing to mix things up? Well, MANY of Reese’s meds are being switched to oral! This is because her gut is doing so well! This will also give her time away from her tree!!! (IV pole) This allows her to regain strength in a (more) natural way and it’s a huge blessing! Pic below from when it was removed yesterday for three hours. It’s incredible watching my little girl walk. Just, walk. Keep on walking and fighting Reese. You are doing it!!

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