Reese’s personality is back. I missed her so much. Her symptoms are resolving, painfully slowly, but we see more and more of “Reese” each day. This is a little girl who knows what she wants, and isn’t afraid to say it. She is very clever and thoughtful. She asks questions about everything and wants to understand… from the ultrasound tech to the nurses, Reese loves knowledge. And Reese loves to be respected. Each time some new, sometimes awful, “medical” thing needs to be put in place, I always say, If you respect Reese and explain it, she will respect you and understand. She is my rock star.
Reese is on insulin around the clock now and her medicine-induced-diabetes is under control. We are still playing with doses to get it just right (resulting in extra pokes and shots, which she handles like a champ, offering her finger or her arm. And always watching, always learning, never turning away in fear.)
The doctors are watching this “flare” of gvhd closely… weighing the effects of high dose steroids and the need to wean them against the need to control her raging T cells (the same T cells that are hopefully seeking out and killing rouge JMML cells, God we pray this is the case.) Right now she is not stable enough to begin another wean.
I pray for God to control her pain and bring her safely out of this battle. I also thank god for the “negatives” again. Thank you for the NEGATIVE CMV result today. We need two in a row to be removed from CMV meds that have their own side effects. This is a win! Also due back this week are the JMML tests. We need a WEEK OF WINS, please. This is where it’s at.
On Wednesday, Anna is organizing and Father Dan is presiding over a prayer service for Reese at Sacred Heart Church. We will be FaceTiming to see Team Reese from SF and Nonnie & Poppy will be present, representing the family. Please, join us, if you can find yourself in the area. All prayers are so appreciated and welcomed.
Wednesday, July 25
Sacred Heart Church, Winnetka
Team Reese grew in size this week with a visit from Team Felderman (godfather Heath, auntie Staci, and cousin Addysen.)