10/6/18 BMT Day +157 EBV

Life isn’t about waiting for the storm to pass. It’s about learning how to dance in the rain.

My principal, Susan, used to put quotes at the bottom of her weekly newsletter. It was about a decade ago that she added this one, and it stuck with me. I had these words taped to my mirror, in my little Chicago apartment on Wisconsin Street, and I remember picturing myself with a yellow umbrella (of course, yellow my favorite color), dancing through dark storms. Trying to find peace and some kind of happiness when all was supposed to be just… gray.

Tonight I will tell you about the storm and the dancing. And the yellow umbrella.

Virus reactivations. Reese’s EBV came back positive a second time, so they are taking out her B Cells. This was a blow, one that I really struggled with, it felt so defeating. She doesn’t feel the EBV reactivation, it is so small that she can’t tell at all. The doctors are able to detect it very early, before it can do any damage, and then it is swiftly removed (by removing B cells, where it dwells.) An EBV reactivation can lead to secondary cancer, it’s too scary to talk about. So we need to take them out, but this is a big loss. It can take months for them to grow back and work right.

Another reactivation, Reese’s CMV, is also sticking around. Her kidneys are large and strained, in part because of the CMV meds she has been on since May. So this week she was also moved to a new CMV med that she couldn’t have before. Why couldn’t she have it before? Because her marrow needs to be strong to handle this med because it is a count killer. So yes, exactly what you are thinking, the silver lining! Reese’s marrow really took hold this week and her counts are very good… meaning the doctors saw an opportunity to try a better medicine to wipe out this CMV for good. Now we are watching her counts, waiting to see what will happen, and also praying her stronger t cells and stronger medicine will wipe it out for good!!

Reese’s nausea persisted through the week. The ileus made it difficult for her to take in calories and she was pretty miserable all the time. She asked me over and over, hour after hour, “When will I stop throwing up?” and “I’m afraid I’ll never stop throwing up.” and “Why do I feel yucky all the time?” and the hardest to hear, “Did I feel nauseous when we were at our yellow house?” Sometimes I fear it’s hard for her to remember feeling well, when things get so tough. I am happy to report that the nausea started to lift a couple days ago… and yesterday and today were significantly better. We are hoping that the ileus is getting better. (To get better, ALL of her gut has to wake up and start working right. Remember it was all very damaged.)

Throughout the nausea, Reese was very determined to get up and moving, because she believes that moving “pops the bubbles” that are hurting her tummy. One way is dancing in her seat. Reese bops up and down, smiling her very REESE smile, and tells me she is dancing to pop bubbles. It’s so sweet. Reese has an affinity for VERY cold water. Straight out of the fridge, must-have-condensation-on-the-bottle to prove it, cold. So each time Reese deems her water bottle not cold enough, she wants to walk to the fridge down the hall to get a new one. This is great exercise, and so so Reese. When Reese wants to stretch her legs, because she can, another destination is the “yellow umbrella”. There is a mural, that she was too weak to reach not that long ago, that she requests to visit. It is a woman, walking down a pier in the rain, gray. But she is carrying a big yellow umbrella. Yep. Quinn and Claire kept us all entertained on these walks with their dancing and Reese holds her head high, knowing how far she has come. And she has come so far.

I have been waiting for Reese’s mutation test to come back since Sept 4. It is not back yet.

Our doctors are finishing up a study right now. They looked at all JMML kids they’ve ever treated, who had the exact conditioning that Reese had, and severe gvhd. None of them relapsed, it’s a perfect score. My doctor told me that he plans to add Reese to this study. Yes, please God, this is what it’s all about!!

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