So far so good with Fludarabine. No reactions, she is taking it about the same as she would a hydration drip, we have seen little to indicate she is even on a chemotherapy med this week.
Her counts have been ticking down a bit, but not as precipitously as they did on Campath. Fludarabine as mentioned previously is a general fast-growing cell suppressor, so it should be reducing all of her blood counts somewhat. Her white has been going down and that’s the primary marker the doctors appear to be tracking. Her Lymphocytes are holding at 2-3% depending on the day, and her platelets have remained high so far.
We’re a few days out now, and what we expect to be the worst of the conditioning lies ahead. Tomorrow Zoe is admitted, goes into surgery, and has her last dose of Fludarabine. Saturday & Sunday are Melphalan, the sore-inducing med, and Monday is Thiotepa, which requires 5x a day bathing to prevent chemical burns on the skin.
We’re hoping that things continue to go as well as they have. Zoe has been wonderful, and while we can’t quite expect an easy ride, we remain optimistic that the Reduced Intensity Conditioning will allow her to meet her count goals without major pain. After that, we’ll be focused on getting those counts up in the wake of the transplant on Wednesday.
Update: Counts back
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- WBC: 1.2
- Hemo: 8.9
- Platelet: 513
- Lymphocytes: 0
- Creatinine: 0.2
- Bilirubin: 0.5
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All in all we’re exactly where we should be. Liver and Kidney markers are good, Lymphocytes mostly gone, WBC down where it should be.
Evan and Michelle, I am fortunate to have your Mom and Larry as next door neighbors. We also have a new grandchild and understand how you can put your life on hold for them. My last job was working as a peds P.T. at Duke, in home care and I worked with many post-transplant kids at home. I marvel at all the new skills parents get with a medically fragile child, and with the total commitment of all the family. My thoughts are with you for the transplant day and the days after, and hope it will go well for Zoe. She and Parrish (my grandson 9 months old) will play at the grandparents house one day. You all picked a great place for her treatment. Love to you all, Barbara Howard
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Wishing you all well
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