4/6/19 Chimerism & mutation results

Tonight we roasted marshmallows in the backyard.
Anyone who knows me well, knows that I don’t read my entries after I write them. I have never gone back, ever. Someday I will… someday far off in the future. So there are many things I don’t remember writing, in the fog that was 2018. But there are some dreams I remember, one of these is the dream of my backyard. We moved into our house six weeks before Reese was diagnosed. We weren’t unpacked when our lives halted and overturned, and our house stood like a time capsule. Well, when we first walked through our house in July of ’17, one of the things I immediately fell in love with was our backyard. I remember flowers, butterflies, nooks and crannies for imaginative play, and a fire pit. I had visions of my family eating on the patio and ending with s’mores on a chilly summer night. Well, summer isn’t here yet, but tonight we broke in the fire pit for the first time, almost 18 months after we closed on this house. There will be many, many more of these great nights together, as a family. A real dream come true, it’s so amazing to live this vision.
How is Reese? She is looking more and more like herself every day. Her “puffiness” won’t disappear until she is off Budesconide (a kind of topical steroid for her gut, think hydrocortisone for your skin, but she swallows it.) I have learned that because of her gut GVHD, there are likely areas that aren’t completely healed, and the steroid that is supposed to stay in her gut sneaks into her blood stream.
Her EBV reactivation went “undetected” again on it’s own, and I learned from my Lurie team that it wasn’t REALLY positive. It was a very, very low level. So we are celebrating her not having this problem. Just to keep us on our toes, her galactommanan is positive (this tests for fungal infections before a transplant patient actually has a fungal infection. It’s an early warning system.) So we are praying that is was a false positive and waiting.. to confirm it was positive, it would need to go up again this week. So we want it to go down. Reese is running about, getting up from the ground by herself, dancing, asking millions of questions (very Reese), and laughing, her signature giggle throughout the day. It is a true joy. But our greatest joy this week came from our doctor in San Francisco. Right before we left, Reese had a bone marrow aspiration to check: her chimerism (percent donor cells) and her mutation status (to make sure her mutation is still gone.) We found out last week that she is 100% donor (cheering!!) Then, an email came through on Thursday evening confirming that her mutation is still UNDETECTABLE. This is what it’s all about. My doctor ended the email with the prediction that Reese will be going on to live a normal life. A normal life. A normal life. THIS, yes, the best!! My tiny fighter, who slayed the beast that is childhood leukemia, moving onward and upward. What a blessing, my sweet little Reese, NORMAL. YOU did it!
As a teacher, I have a broad view of normal and happiness. Early on in my career, I learned that every child brings something unique to the table. And I also learned that EVERYONE is working on something. Because we are human and humans by design have flaws, beautiful flaws, things to overcome or embrace, that are character building and “normal”. Since the day my girls were born, I have had a simple wish for them. Happiness. Specifically, that they have the ABILITY to do whatever it is that makes them happy. This wish holds for my three little girls, because simple happiness, in it’s purest form, is winning.

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