5/9/18 BMT Day +7 Mucositis

Anyone who knows me well knows that I have been fearing this day for weeks. Day +7. Today through the weekend Reese will feel the full impact of a bone marrow transplant. I am thankful my husband is here with me and we are a team, supporting our sweet girl on these most difficult of days.


Reese is resilient and tries SO HARD to be a four-year-old and play. She is feeling the impact of the BMT and mucositis and her only complaint has been, “Mommy, I can’t even eat my edamame if it keeps going in there” (points to the blue bag. Yes, that bag.) My favorite words for the next few months are “to be expected”. I just pray we stay the course, as planned, no surprises. It’s a lot to ask for, but I have faith.
Now, for the BIGGEST, BESTEST news!!! Reese’s molecular testing came back negative for her mutations!!! This is huge, incredible, I cried and hugged the doctor. THANK YOU GOD!
I am going to do my best to explain this in a way that makes sense. I tried to explain it to a few people earlier and I failed. So, this is my second try… here goes…
Reese had two mutations at the root of her JMML. RRAS2 affected 39% of her cells and JAK3 affected 5%. The second mutation is what made her case more severe than some. Because of the severity, her doctors decided to try something- two rounds of azacitidine/fludarabine/cytarabine before coming to UCSF for transplant. Now, we know that chemotherapy can NOT cure JMML. The only cure is a bone marrow transplant. But, my doctors are trying to prove a theory that coming to transplant with less disease burden increases the probability of a successful outcome. So Reese got pretransplant chemotherapy in Chicago in Feb and March. We had a dream- a dream of molecular remission going into transplant. Now, this isn’t something that is achieved with JMML (it’s different than other leukemias.) If you recall, Reese had clinical remission- no sign of leukemia in her bone marrow aspiration in early April. We celebrated, elated that the chemo worked!! But… the lurking question was always, but does she have molecular remission? (Clinical remission has been described to us as “window dressing”. All looks good in the blood… but what is hiding in the molecules?) Well the results are back: Reese was in molecular remission going into transplant!!! THIS IS AMAZING!! She is seriously an anomaly, God had a hand in this. It is beyond incredible and such an exception to the rules!! The less disease burden going into transplant, the overall health of Reese, the less disease for the conditioning to wipe out, the less cells that could be missed leading to relapse, all lead to the theory that it will lead to a BETTER OUTCOME!! We are so happy and so thankful, and with this horrible disease we need every advantage we can get. God bless our amazing doctors.

One day at a time here, and my little girl is doing her very best.

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