1/24/19, Mignon Loh

Things continue to go well for Reese. She had a few great days before she woke up feeling nauseous today. It passed by afternoon, but it’s sad to see her feeling so sick. At bedtime she thanked God for only making her nausea last a few hours. A few hours too many, but her perspective is skewed, and she was pleased to be feeling better.

I met with our doctor and discussed possible reasons that Reese’s labs seemed to be trending upward after her little bout with the stomach flu. There are a few theories… my favorite is that the Rotavirus somehow opened a door to let her t-cells enter her gut. And they did good things. (That’s not the official terminology, I do my best.) Or it’s a coincidence. Time will tell. Meanwhile, we continue THE taper. Her hydrocortisone (steroids) will be back down the day after tomorrow. After the stress dosing we did (to match what her adrenal glands would have done naturally when she got sick) it took a week to get her back down. The next immunosuppressant taper is… budesonide (or “sprinkles”, as Reese calls them.) Budesonide are targeted steroids.. that don’t absorb well, so they sit in her gut and, in theory, work right there. They are part of the reason that Reese still looks puffy, she is still technically on “steroids” because while they don’t absorb well, they do absorb.. so some of it gets into her whole system. In the coming weeks, we will start to see Reese’s puffy “steroid” look go down, it has already started. I see more and more of the old Reese everyday. It has been interesting going through this with an identical twin, our constant in so many ways. My dear, sweet, giving, kind, Quinn. She is such a first born… always striving to do her best and following every rule put before her (and keeping everyone else, including her father (to my amusement), in line.) I KNOW that they are identical to everyone, but remember, they aren’t to me. I never thought they looked alike. But, lately, I see so much REESE in Quinn.
Reese also received her last Infliximab infusion today and then it’s OFF. Happy dance, another immunosuppressant down. What’s left? Jakafi and Vedolizumab. (And eculizumab, for her TMA.)
Tonight, Mignon Loh made dinner at the Family House. She is the reason that we are in San Francisco. Last December, when we were searching desperately for a diagnosis, we found Mignon Loh. Reese could not be diagnosed with JMML, even though we knew she had it, because her mutation could not be found. All tests that were currently being used in Chicago (Seattle based) were negative. UCSF is leading the country in JMML research, and back then, the 500 cancer gene panel was the best available to diagnose Reese. They found two mutations, and finally her treatment could begin. (Since then, enter the UCSF JMML exon panel, which is even more precise.) It is in knowing about these mutations that we are able to track her disease so carefully, and know that she is truly disease free. Why did Reese have these mutations? Well it started with one. It was “somatic”, so not genetic or inherited, and it happened early on, in utero. It is completely by chance, random, “bad luck” as I’m told.
They drew Reese’s chimerisms again today. We are so blessed that they have always been 100% donor, THANK YOU GOD. This is important, but the genetic mutations tell the real story, and we track them every three months. Reese has had zero mutations since her GVHD hit in early June. The graft vs leukemia saved my little girl, and I will be thankful for her journey and it’s outcome every day of my life.
I digress, as I often do. I’ll return to my story. Today, Mignon Loh, was making dinner at the Family House. A year ago today, Chris and I flew to San Francisco to receive the results of this UCSF 500 panel from her, to diagnose our 3-year-old daughter. This is also when we met Chris Dvorak, and we knew, the minute we left the building, that this was where Reese’s life was going to be saved. Our San Francisco journey started 1 year ago today. Thank you God for the brilliant doctors you have lead us to, and thank you God for making people who devote their lives to saving lives like Reese’s.

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