4/24/18 BMT Day -8

On Monday, Chris and Quinn safely delivered us to UCSF, Benioff Children’s Hospital.

We are on the Children’s Blood & Marrow Transplant Floor, along with 12 other children who are also receiving life-saving BMT. We never see any of these other families, because all of the children are in strict isolation. Today, Reese was allowed to leave the room one time. We visited the play room in isolation, and then it was high cleaned when we left so another little boy or girl could take a turn. We have this privilege for one more day, and then we are completely confined to our room. A room that is very welcoming and high tech, I might add. We have views of San Francisco and the park across the street (that part is bittersweet.) Reese’s TV is bigger than ours at home and Reese has quickly been learning to use the control screen (basically an iPad that controls… everything.) She decorated the room with Quinn and she has decided to make a ballet studio in the “parent wing” (as I like to call it, a little room off of my bathroom.) We papered the walls in her studio and she is painting it in RAINBOWS. We play all day and her spirits are high. I was given a physical therapy goal for Reese- have her lift a beach ball over her head and throw it (to get her heart rate up.) The day before admittance she walked (ran, really) over 4 miles at the Botanical Gardens here with Quinn. I asked her to throw me the ball and when that was done, she had me play music on a xylophone while she danced at the ballet bar in the playroom. It seems unnatural, that she should be having a BMT, because she seems so healthy. But it isn’t real, her leukemia is hiding. But Reese is going in strong- very strong.

The first chemo started today, 1 of 3 of the conditioning regiment that will wipe out her own marrow so that she is ready to accept her donor’s marrow on Day 0. She handled this first infusion well, as expected by her doctors. Tomorrow will be more of the same.
As our day was wrapping up, and our west facing windows were allowing a lowering sun to shine in our room, our nurse proclaimed, “Look, a rainbow!” There it was, across Reese’s bed. As Father Dan put it, a sign from heaven. I laughed out loud, overcome by joy. Complete & overwhelming happiness- it felt SO GOOD!

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