7/19/18 BMT Day +78 GVHD Flare

In our family, there is everything that came before December 11, and everything that came after. I’m sure a lot of you have a date like that in your reality… the day your world was shaken and just couldn’t return to normal. I remember December 10 just as clearly, my family spent the day at the Botanic Gardens having breakfast with Santa. It was a very joyous day, full of Christmas spirit and lots of laughter and fun. There was just enough snow on the ground to make it magical and my family was just as it should be. Happy and healthy. Then my little girl drew the wrong straw, she was the 1 in 1.2 million, and the beast that is JMML entered our world. Chris and I were talking about this day, it came up when he found himself in the spot. On December 11 he flew to LA for a project as planned. It was that same morning that I took Reese to the emergency room because she woke up… “sick”. Something just didn’t feel right, I didn’t want to wait for the doctor to open, the doctor who always told me everything was fine. I made it to three different hospitals that day. It was an orthopedic doctor in Skokie who looked at her labs from Evanston and said, “Your daughter has leukemia.” Just like that, your 3-year-old has cancer. I carried her out to the car and was admitted to Lurie an hour later. Meanwhile, Chris had landed at LAX, gotten in a cab, and arrived at the office. It was there, standing on the sidewalk in front, that I told him his daughter has leukemia, and he should turn around and come home. Chris found himself in this same spot on Monday, 7 months later. He called me with the surreal feeling, the December 11 reality, the one we can’t shake and are working desperately to change.

How is Reese today? Today is a bad day, my sweet girl has redefined miserable. Her GVHD flare is attacking her upper gut, too. Think about the time you had the flu. She has been there since June 1. Each step forward seems to be matched and we are trying to stay positive and she is fighting a battle. Endocrinology has been here twice today… they think Reese has med induced diabetes and they want to start insulin shots. But they feel bad making her quality of life more dismal. But it is necessary and they will do whatever it takes to bring her to the other side safely. Last night she was up the whole night, she couldn’t catch a break. Please pray for the end to this madness, for a breakthrough she needs so much.

Reese started physical therapy today. She can’t stand alone and she can only briefly hold her head high without support. She has goals and we know that Reese is a HARD WORKER. Yesterday she sat in bed, on her own, not supported, we were so proud of her. I will comment on her successes here, an update on how much stronger she gets this week! We made a chart with her goals. My strong girl will work hard. She wants to “walk out the door holding Quinn’s hand.”

I will end on another high note, I have promised myself that I will celebrate the “negatives”. The tests that come back the way we want- the things she could have and doesn’t. So today I celebrate her Galactomannan antigen (aspergillosis ) test remaining low. I am so thankful for this.

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