4/20/18 Flamingos and Bone Marrow and Lots of Information

This week Reese had another bone marrow aspiration to check the clinical status of her disease. JMML does not have a chemotherapy protocol… often times children go to transplant without any rounds of  pretransplant chemo (*I’m not talking about the bone marrow transplant “conditioning”.) This is because it has not been proven that pretransplant chemo leads to a better transplant outcome (our doctors are trying to prove this.) Theoretically, it makes sense to me…. the way I look at it: going into transplant with heavy disease burden vs going in with clinically “normal” blood. Advances are being made right now by our UCSF doctors, thank god for them. Well, because Reese’s JMML was so aggressive, they threw the book at her. They used the German regiment of azacitidine and the US regiment of fludarabine/cytarabine. She did two rounds of each, one right after the other. 50% of kids who have tried this regiment have no response (or progress instead, which is so sad.) The other 50% have a clinical response… like REESE!! We learned this evening that she is going into transplant with no visible leukemia!!! Her clinical response is the best it can be. (Basically, what this means is that right now, her bone marrow looks like any other healthy child.) This is amazing! Now for the molecular response.. this one is a little trickier. Her bone marrow is being studied (the UCSF 500 gene study, again) to see if her mutations are still present, and if they are, how much. We already know that her secondary mutation is down to 0% (!!) but we will need to wait two weeks to hear about RRAS2. The doctor is hoping for less than 10% RRAS2 (based on her hemoglobin F.) My prayer is for complete molecular remission going into transplant, that is 0% RRAS2. Please join me in prayer!
Reese’s bone marrow transplant has been moved from May 1 to Wednesday, May 2. We found out from the donor’s center that her cells are being collected later in the day on May 1 than we anticipated. Then they are flown straight to San Francisco, but they will get here too late in the day for the lab to spin the plasma (this has something to do with our donor not sharing Reese’s blood type.) So Reese’s transplant will happen at 11am on May 2. We have a lot of hurdles to jump through between now and then. Reese and I go inpatient and Quinn and Chris fly home on Monday. It’s back to work for my husband and back to school for my Quinn. Then, “conditioning” (heavy, heavy chemo, to wipe out Reese’s own bone marrow) begins. From what can be predicted, Reese’s hardest, most challenging and painful time will be from April 29th-ish – May 17th-ish. We were given the details on Tuesday and I can tell you, I was devastated. It was my hardest day since December 11, when a pediatric orthopedic doctor told me point blank, out of the blue- your daughter has leukemia. I will adjust to this new information and be strong and be the rock that Reese needs during these difficult days. And in the meantime, she is strong, ready, and we are looking for rainbows.
There is strength in resilience, hope, peace, extraordinary efforts. I choose rainbows for my daughters, and my rose-tinted sunglasses have been in overdrive this week. MINDSET. We control our perspective and our actions. So, this week has been diverse… many doctor appointments and also celebrating life and the love of flamingos, trolleys, “golden” bridges, pink flowers, koala bears, sea lions, and family. Our family isn’t complete here… we are missing Claire Bear badly, and we know that Nonnie and Poppy are working in overdrive as well, as they always do, taking care of the tiniest member of Team Felderman back at home.

“Think about your hero. Do you think of this person as someone with extraordinary abilities who achieved with little effort? Now go find out the truth. Find out the tremendous effort that went into their accomplishment—and admire them more.” -Carol Dweck, Mindset

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