3/19/18 Round Two Chemo, There’s No Place Like Home

Round 2: Today Reese is on Day 8 of chemo, Day 3 of inpatient intense chemo. My little superhero’s spirits are high and she is powering through.
My household is currently obsessed with the Wizard of Oz. Yes, the original! We watch it in parts (and no, they haven’t seen the monkeys.) At the hospital, Reese has sparkly shoes (like Dorothy) and she has been dancing up and down the halls. She has been tapping them together saying, “There’s no place like home.” Unfortunately for my sweet girl it’s not working, yet. If all goes as planned she will get her wish on Wednesday afternoon. After that she will be in isolation as neutropenia hits again and we wait for her counts to improve (just the good ones, we pray!)
The last treatment was extremely successful. Our doctors were extremely pleased that clinically, the JMML wasn’t visible at all! However, molecularly, we know the mutations are still there because her hemoglobin F is still elevated. Much lower, but elevated. We are praying that this round not only affects her clinical presentation, but further eliminates her molecular mutations as well. This would be an incredible miracle, as 50% of kiddos with Reese’s diagnosis don’t respond to this regiment at all. Our goal is to bring this little girl to transplant with as little disease burden as possible, and she is well on her way!!

We hit a bump in the road with our donors. We had multiple 12/12 donors that were being tested for KIR. We were about to choose and activate when- bam. None of them are CMV+ like Reese. This matters because if you mix the two the patient, Reese, will end up with CMV after transplant which is very dangerous. This was a big blow. Our hopes are currently set on a 21 year-old male, from the US, who is an 11/12 match (single mismatch permissive, still really good!) who is also CMV+. We are waiting on his KIR testing…. any minute now, and if he’s good, he’s our man!! God bless him. If his KIR is less than two we have to go back to the drawing board which will stall our process. I am praying that this doesn’t happen, and that we will stay on track since she has already started her second round of chemo. But as her doctor said, these are the cells she will live with the rest of her life. So we want to get it right.

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