2/18/18 – Busting out of Lurie & Snow Angels

Today is post chemo day 6. We broke out of Lurie on Tuesday afternoon!  She has exceeded my expectations with her strength and resilience. The past few days her blood counts have dwindled down to nothing, not that you can tell by looking at this little fire ball. She has been SO HAPPY to be home with her sisters. She has been dancing, running, and playing the days away. Her good counts are down but so are the bad… and I can see that the disease burden is lifted. In the next week or so we will slowly start to see Reese’s numbers climb- pray only the good ones!! We want the leukemia counts to stay low or nonexistent as the other counts return to normal- that will be our first victory!!! Chemo cannot cure JMML, but it can lessen the disease burden temporarily going into stem cell transplant. This is a very BIG deal going forward!!

When Reese gets stronger she will repeat this same chemo regiment next month, a second round, before going to transplant.

This little girl was READY to go home… she spent her last day in the hospital singing about her twin sister Quinn, she missed her SO much. Reese expresses herself through song, little songs she makes up to familiar tunes. She sang about her desire to make snow angels..  something she could not do from “up high” (see video below.) Up high being the 17th floor at Lurie. We seemed to float above the other buildings as the snow poured down from the heavens, so close but so far away for my little three-year-old. On Wednesday, day 2 post chemo, she played for over an hour in the snow.

At bedtime we say our usual prayer… and then anyone can “add” at the end.
Reese’s prayer: “…and god please don’t let anyone else get JMML.” 
Yes, please.

You Tube Video: Reese’s song:


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