1/28/18 Chemo, Mickey Mouse & a Bear Hunt

A lot has changed since I wrote last week. Our meeting in San Francisco was very informative. UCSF is where JMML is being studied in the United States. This is where it’s at for Reese, and we trust these doctors. We recognize that we have a big fight ahead of us and we are gearing up for this fight. We learned that Reese has RRAS2, a rare somatic mutation that causes JMML. Somatic means spontaneous, random, not inherited or germline. A second mutation was also found in my daughter, JAK3. This is what we feared and it makes her disease more aggressive. We are resigned to do whatever it takes to give our sweet girl the best possible treatment in this world.

Reese was rushed to the ICU at Lurie in Chicago on Thursday while we were meeting with her doctors in California at UCSF. Nonnie went with her in the ambulance and this was added to my list of experiences I prayed my daughter would never see. She was suffering from a high fever (104 on Tylenol), too low blood pressure, stomach pains, and spots. We are still in the ICU today and still awaiting some results. I’m not sure if we will fully understand what did this to her little body, but the JMML is involved in the attack on my sweet little three-year-old. We have been watching her get pummeled by this disease and this ends, now. Because we are finally fighting back.

Reese’s surgery has been moved back to Tuesday for her double-lumen broviac (central line), and then thank god chemo begins on Friday. While it is not protocol across the country to treat JMML with chemotherapy before transplant, the doctors who study JMML at UCSF specifically believe that it helps. In fact, they are currently trying to prove that it helps, so that other institutions will treat JMML immediately with chemo. The goal is to get her to minimal disease burden going into transplant. She will have three different kinds… beginning with Azacitidine  (German protocol) and then Cytarabine and Fludarabine (US protocol.) I am trying to avoid googling the side effects and instead focusing on these being Reese’s best hope of going to transplant with the least amount of disease burden as possible. This will increase our chances of  success, and we will be celebrating our first victory over JMML when we see her ever falling numbers improve with these therapies!

Today  we were supposed to fly to Disney World. As we sit in the ICU and the hours tick by, I think about the alternate world… the world that makes sense- where my wonderful girl had wonderful days without suffering. In this world, I know exactly where my family would be because I designed the trip with my dad, down to the last fast pass. I know exactly which princess my preschoolers should be lunching with and at what moment they would have been shaking Mickey’s hand. I know when we would have chatted with Crush the Turtle, giggled with Elsa, and rode the ferry from our hotel to Disney, while listening to their little  gasps of excitement as they watch the castle grow nearer. To some, Disney is difficult, and not an oasis of childhood pleasure. Maybe it’s because some of my favorite memories come from these trips as a child…  but I would take their excitement at Disney over any holiday, any day. We will return to this alternate world, the right world, where my daughter thrives and this is a distant memory. Which brings me to my final point.

Right now, Reese’s favorite book is “We’re Going on a Bear Hunt” by Michael Rosen. To quote this book..
We can’t go over it.
We can’t go under it.
Oh no. We’ve got to go through it. 

And through it we go, hand in hand.

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