Naomi continues to do very well. She had no hematology appointment this week. The home delivery pharmacist who prepares her antifungals and IV fluids calls me each Monday morning. This week, she asked about the convenience/comfort of the CADD pump for Naomi to sleep with each night. I told her, honestly, that the pump is loud and Naomi is annoyed by it. So, the pharmacist provided us with some gravity-based lines to avoid the pump sound overnight. Naomi used it for the first time last night. It was awesome for her. She said that she thinks it was the best night of sleep she has ever had. It primes much more quickly for me, too. I am also happy to not need a 9V battery every other day to run the pump. The pharmacist also inquired about Naomi’s creatinine levels and then suggested that I ask Dr if we can decrease to an IV bag every other night at our next appointment. It might be easier to do that than wean her based on fewer hours each night, and then we can decrease by the nights of week she needs the fluids.
Naomi and Lauryn baked a cake for Day +225 in honor of Micayah.
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.
Today was the first Tuesday we have had off in months. It was fitting that we were scheduled to cook the meal for our local Ronald McDonald House. Lauryn, Naomi and I, as well as some friends, attended together. We look forward to being there again soon. This location said they accept volunteers ages 10 and up.
I am having a very difficult time putting into words the experience. In light of the Route 91 Music festival tragedy, the people of Las Vegas has pulled together amazingly. The Ronald McDonald House was stuffed to overflowing, literally, by donations for families affected by the situation, emergency responders and hospital staff.
When we arrived, the kitchen was unavailable as a crew was making bagged lunches to deliver to emergency response, hospitals and urgent care centers which are all overfull right now.
Personally, being there felt a little like home. Although we had never been at this house before, we were able to easily find our way in the kitchen and dining room. It was an honor to be able to serve them and give our time and talents. Everyone at the house, staff and visitors were incredibly kind and thankful. We enjoyed the opportunity to sit down and share a meal with them.
Naomi had never browned so much beef in her life.
The girls prepared sloppy joes, vegetable stew, cornbread and apple crisp. They also cleaned up after themselves and set up the food buffet-style. We left a lot of leftovers for tomorrow.
The Las Vegas RMH is beautiful. No visit is complete without a photo with the man himself. 🙂