12/12-20/17 JMML and Bone Marrow Typing

December 12, 13, 14: We spent the week at Lurie Children’s Hospital with our little Reese. The word “leukemia” had been used a few times since Monday, and we were trying to wrap our heads around what this meant. During the week at Lurie, Reese had many tests, including a bone marrow biopsy. Reese remained brave throughout and spent each day cuddling with her mommy and daddy. On Wednesday, we learned that Reese did not have ALL or AML, the most common forms of childhood leukemia. This was not a relief, even though it might sound like it. I listened to the fellow try to gently explain this to me… it’s not advantageous to have the more rare form of leukemia. I quickly googled what was left and my heart was in pieces.

On Thursday, the doctors introduced us to JMML. Juvenile Myelomonocytic Leukemia. A very rare leukemia that affects only 1 in a million children (approximately 50 new cases a year in the US.) We were told that through the process of elimination, this is what they believe Reese is fighting. While some leukemias have an aggressive chemotherapy course that can possibly cure them, JMML does not. The ONLY cure for JMML is a dangerous bone marrow transplant. Having this transplant statistically gives a child with JMML a 50% chance at survival.
A molecular study is being performed in Seattle and we wait for those results for the next couple weeks. This will give doctors more insight into the best plan for Reese going forward. We continue to pray that she does not in fact have JMML.
My sweet, brave girl celebrated “no tubbies” on Friday when she bounded out of bed. She was so happy to be free of the IVs. She ran down the hall and asked me to take pictures of her running and leaping. She was so happy to be going home to see her sisters. They celebrated their reunion with lots of hugs, I love yous, and of course dancing to jingle bells in their Christmas jammies.

December 20: Reese and her sisters had their bone marrow “typed” at Lurie.  Reese had blood work done and there is now a sense of urgency to plan and move forward. We are praying that Claire is a match but we know the chances are 25% that a sibling matches. Quinn was typed also, but the identical twin piece remains very much a mystery in the puzzle. We are talking to doctors across the country in Boston, San Francisco, Madison, and of course at Lurie. So far, we have yet to find a doctor with experience with identical twins and JMML. Quinn’s bone marrow is a perfect match because her and Reese share the same DNA. Doctors don’t know if this is advantageous or if it makes her a poor choice as a donor  (because this is the same bone marrow that developed this disease in Reese.)  They are leaning toward not using Quinn as a donor.

Reese in red, Quinn in green

Rally for Reese Donor Drive

Tomorrow is Rally for Reese at Sacred Heart Parish Center in Winnetka  (1090 Gage Street.) We hope to see you there between 3-6pm for a cheek swab to find out if you can save a life, maybe Reese’s. Thank you for all the love and support we have received, we are praying for a very successful drive!! I love this sweet girl, nothing makes me prouder than her and her sisters.

News stories here:
https://www.nbcchicago.com/on-air/as-seen-on/web—rally-for-reese_Chicago-466862203.html

http://www.chicagotribune.com/suburbs/winnetka/news/ct-wtk-tot-leukemia-fundraiser-tl-1228-20171226-story.html

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