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.”
You Tube Video: Reese’s song:
Share this post: