11/1/18 BMT Day +183 Optimistic for Christmas

Reese said good-bye to diabetes this week, and yesterday was her first day without blood checks. We are very happy this is in her past. She got her second dose of ecluzimab to fight the TMA on Tuesday. This still seems to be “mild” which we are thankful for, but the doctors do not believe they have it under control, yet. Reese continues to feel pretty good most of the time, and bits of her clever and cunning personality come out more each day. Today she played with Quinn. That’s right, she was available for imaginative play, and she was able to authentically engage with her sister like a four-year-old. For an hour and a half. I cried and I know I’m not the only one. I just kept thinking, she’s back. Sadly, while getting so much better in so many ways, she has had more spells of being violently ill over the past few days, we pray these come to an end soon. She asks me all the time, “when will it stop?” with sad eyes that beg, please mommy, make it go away. All I can tell her is, soon sweet girl. Soon this will be a thing of the past.

Reese started a new drug yesterday, Anakinra. Our doctor is of the opinion that her gvhd is in fact NOT controlled, but that her t-cells are controlled. We are going after the gvhd in new ways over the next few weeks. Stay tuned on this development. Prayers we once again benefit from his innovative thinking and ground breaking work.

Father Dan came to visit again this week. He is our special RAINBOW priest, “God’s helper” as Reese calls him. Back at home, last winter, we spotted rainbows across our family room, coming from the sun hitting the prisms in our window. This happened right before a visit from Father Dan, and he told my girls the story of the first rainbow, God’s sign of hope. This was a powerful moment for Reese, and it started her love of hope and the rainbow. As you know, on May 2nd, Day 0, at 3:59pm, a rainbow crossed over Reese just as the the last of her new cells were pumped into her body. The cells of life. This has been a sign to Reese, our family, and friends, of God’s love and “hope”, hope for a bright future for our little fighter.

When I told Reese that Father Dan was coming to visit again she decided she wanted one food, and one food only. She wanted to share RAINBOW sherbet with Father Dan. This proved to be a bit of a challenge, but we made it happen (good save, Poppy) and we all shared “rainbow sherbet”, together. We appreciate Father Dan’s love and support, and all of the effort he makes to be here with us to pray over Reese and ask God’s help for her total healing and recovery.

My doctor is as optimistic as I am that Reese will spend Christmas Day outside these hospital walls. I pray we are right! She won’t have a white Christmas (more palm trees than Douglas Fir) but we may all sleep under the same roof on Christmas Eve! This hasn’t happened since April 13th. What a Christmas blessing!

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