6/23/19 RRAS2 and GVHD

GVHD. While this complication almost destroyed my daughter, it also saved her life. While I don’t read back (many of my previous entries are a mystery to me) I do know that I have written on this topic before. Reese came out of the most intense conditioning (chemotherapy) with her gene mutation still present. This blows everyone’s mind, how did this survive chemotherapy that is so intense that a person can NOT survive it (but they do, when they are given life saving NEW marrow to replace the marrow that was completely destroyed. But not completely in Reese’s case.) This was discovered after her May 30, 2018 bone marrow aspiration. UCSF’s incredible technology could spot RRAS2 at 0.1%. But at the time, we did not understand what this meant. We celebrated her 100% chimerism… we thought it was all good. We now know that JMML kids relapse, fast, in this case. But right after, the first week of June, is when GVHD hit for Reese. Her incredibly strong donor cells were hunting out foreign cells and destroying them. They did a lot of bad, but in the process, they killed the remaining JMML cells, and Reese has been mutation free ever since. This was confirmed late Friday night, when we got another ALL CLEAR report from UCSF. And that’s what it’s all about!! God bless our doctors, we are forever thankful to hear this incredible news. It worked. She DID IT. Reese has been receiving bone marrow aspirations every three months since December of 2017. She will NOT have another aspiration scheduled, she is done. Our team is confident that she slayed the beast that is JMML, there is nothing better!!!

So how is Reese? Fabulous. As fabulous as a flamingo, she would tell you. It has been one year since she started high dose steroids and her body is just now becoming hers again. Not only does she look like REESE, but her body can perform like Reese again. She is running, dancing (ballet, I mentioned last week that she was starting, and she loves it!) and climbing stairs with only a spotter. Her hair is growing in and she wears it so cute, messy with a light curl, it’s very Reese and just right. And she is learning, she is a little sponge, eager to grow in her mind as well as her body. Children are resilient, and she is a fighter.

Reese’s jakafi taper is going well so far. We are still on the 1/2 dose with no repercussions.

When Reese and I drive to Lurie together we have the best talks. Her tiny but mighty voice floats up to the front seat, always questioning, always thinking. It was on one of these drives that an idea traveled from her heart to my ears.

Reese- Faith is small. But we can do big things with it. If a lot of people put their faith together, it can be big.

My sweet Reese, if only you knew your army. The incredible team who flooded the heavens, day after day, praying for your safety, for your complete healing. This faith carried my little girl. She never doubted, she always knew God.
And Chris Dvorak, “Dr Chris”. The man, the doctor, who uses his gift to dedicate his life to saving lives like Reese’s. And he is profoundly good at it.

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