12/11/18 BMT Day +224 Anniversary of the diagnosis day

December 11. Anyone who knows us well understands what this day means. That it is THE day.
The day that started a string of life changing days for Reese and our entire family.

December 11 – the day Reese was diagnosed
May 2 – the day that Reese was given new cells and a chance at life
May 30 – Reese’s first 100% chimerism
June 4 – Reese was diagnosed with gvhd
July 3 – Reese’s first mutation free bone marrow aspiration
December 20 – Reese will ring that bell

..and lots of big problems and big wins in between.

It has been 365 days since Reese was diagnosed. I am so thankful that it is December of 2018, not December of 2017. December of ’17 was my worst (followed closely by January of ’18.) I was terrified, crippled, humbled to the point of exhaustion, crying until there was none left. And then crying more. The pain of December was my personal lowest and most horrific. This was not Reese’s worst time, Reese celebrated the holidays and was a loving, happy, energetic three-year-old. Who had no idea what JMML meant. In January our bodies began adapting to our new normal being our worst nightmare. We spent every week in the emergency room with Reese as we watched her get sicker. We weren’t fighting back, we were watching her get pummeled, and it was breathtakingly painful. Then we met Loh and Dvorak, in person, on January 26. The same day that Reese was admitted to the PICU back home. They laid out a plan. We were going to fight back in a BIG way, and Reese was going to win. We started immediately.

As I said above, December 11 started a string of important dates. Life changing, life SAVING dates. Reese fought back and our team is the best. She did it, and it was no small war she won, littered with battles that are too big for any human, let alone a four-year-old. But who better to teach us how it’s done, than a pint-sized little blond who loves God, rainbows, and the color pink.

Leave a Reply

Your email address will not be published. Required fields are marked *