4/27/18 BMT Day -6 & -5

Reese has continued the first of three chemotherapy, the bu in bu/cy/mel. That stands for Busulfan, Cytarabine, and Melphalan. Three ferocious chemotherapy drugs that will destroy her own marrow beyond repair. Then we will replace it with new, healthy marrow, the donor’s.

Yesterday we made butterflies to hang across the ceiling, painted our walls, and played hospital bingo. We figured out how to call in on the hospital phone to pick the cards and Reese loved hearing herself on the TV, so we picked most of them… and then she WON! It was pretty cool, she got an American Girl Lego doll kit (everyone eventually wins, it’s cute.) She was worn out at the end of the day but it was full of happy moments and sweet memories.
Today, Day -4, started out much the same. We played, colored, painted, and went to the play room and made music on her favorite instrument, the xylophone, and danced. She made up songs about missing Quinn and instructed me on how to dance to them (I would list this skill of mine as “developing”.) When our hour was up, we walked back to the room for lunch. 11:15am is when the chemo finally started to hit her and it was distressing and messy. She fell asleep for a couple hours and it got worse after that. Then, at 2:15, someone snuck into our room. It was NONNIE!! She hopped on a plane yesterday morning (and then went into isolation at the Family House for 24 hours) and here she was! Reese got a second wind and played the rest of the day with us. She didn’t eat again (to be expected) but she sure was her charming, inquisitive, & playful self.

It is expected that Reese would handle the first round well. It is also expected that the next two will be terrible. Pray for my little girl, it starts at 9am tomorrow. She is so brave and she just can’t understand what is going to happen. Along with these rough chemos, she will be receiving ATG, rabbit-derived antibodies that work against human t-cells. It will take down her immune system so that it doesn’t reject the donor marrow on Tuesday. Very necessary, very amazing. But the side effects are also bad, everyone is allergic to it (because it’s from a rabbit), it’s just a matter of how much. This on top of the chemo. At some point over the weekend, they will need to give her a feeding tube that will stay in place until mid/late May, likely.
In Reese’s words, “Mommy, let’s get this show on the road.” And we know the road is the path to health and happiness. I do not like this road, I would never choose this road. But today, it is the road to life for my sweet four-year-old. So we go, and I see a rainbow just down the way.

Pictured- Reese and Nonnie

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