This week we celebrated her last day of Tacrolimus! That was Tuesday. Then, Naomi had her bi-weekly follow up yesterday. Her WBCs have returned to normal after being elevated for about 8 weeks. The dr was about to pull her line thinking maybe it was a problem. But now it is in normal range for the first time in months.
Her hemoglobin is finally holding steady and also in normal range. She is doing well with Floradix for iron and hibiscus and rose hip tea for vitamin c. Her platelets…. dropped again. They are still in normal range (180s) but having gone through this before, I would be lying if I said we are not worried. Her doctors are not worried though and have been very reassuring and positive. Her chimerism tests show she is 99%-100% producing Micayah’s blood. So they are optimistic that she is just regulating coming off meds and having her hemoglobin and WBCs stabilize finally.
I actually spoke with Dr. Margolis today. I am sure that I have mentioned before how much I respect and treasure him as a doctor but I will say it again. I texted him this morning for next step instructions. Within 5 minutes, he called me to provide guidance and optimism. So Naomi will be going in for labs on Monday. Those results will then go to Dr. Margolis in Wisconsin and hopefully she can stop Acyclovir and Pentamidine and get her line pulled. In NV she gets Pentamidine through the IV. If we were in another state, she might be able to get it through inhalation like she did in WI and that line would be gone already.
I feel selfish for asking. There are so many others in far worse situations and seriously life-threatening conditions. I have seen so many parents bury their loved children. I never asked to enter this hematology-oncology world. None of us ever do though. Please keep all these families in mind… and maybe keep Naomi in mind as we go for these labs Monday. She is a TOUGH girl but she is tender and fragile inside. I can see it. A mom knows these things. It is a tough exterior to protect what is most sensitive and buried deep inside. She has been through so much. May it finally be time for her to finally have her catheter line out?