This will be a brief update. Not much new, which is good. Tuesday was a quick lab appointment. Naomi’s ANC was 3200, platelets 277 and hemoglobin 12.5. She lost another lb which is decent since she gained so much during transplant and while on fluids.
She still gets IV 8-9 hours a day and antifungal IV each night. Her meds have not changed in months as she is still on Acyclovir, Tacrolimus and magnesium.
Her engraftment results came back from early September. The CD3 line was too young to be measured last time but is 98% donor now. The CD33 line is 100% Micayah’s. We believe the CD33 line was too much hers after the first transplant and caused the need for a second transplant. So we are optimistic seeing the CD33 at 100% donor!
Her IgG levels have stayed well above 500 allowing to not need an IVIG infusion. Those make her feel pretty bad so that is good, too.
Naomi continues to be active in choir at church, and some homeschool activities and Irish dance. As we head into cold/flu season, we will be very diligent with essential oils being diffused, the house being cleaned and her avoiding all illnesses wherever possible. There may become a point where she needs to pull back on activities but for now we are happy she can be involved. She also has enjoyed quite a bit if baking at home. Our new kitchen is amazing to prepare desserts and meals.
Thank you all for the prayers and good wishes. Little by little we are seeing her become more cheerful, less stressed and living a normal life without resisting or avoiding the necessary meds and infusions. She counts down the days to day 365 when she can hopefully start planning to get the catheter removed. That seems to be her goal and light at the end of the tunnel right now. And rightfully so.