December 9, 2025

We’re in the middle of a super busy appointment/hospital week. We kicked it off with the annual Harley Toy Ride. Tate once again rode the lead fire truck and we helped to sort toys. It’s a cup filler to hug so many familiar faces and to be reminded of all the work and generosity that goes into bringing gifts of joy and distraction into the hospital rooms. We’ve been on the receiving end so frequently, it’s a gift to be on the other side too.

We followed that with meeting up with a HUGE group of CCBD (Center for Cancer and Blood Disorders) families and our BMT childlife specialist, Caroline, to attend Gaylord’s ICE. It was cold (9 degrees) but beautiful and so festive. Getting to catch up with sweet Caroline was a highlight. These special events get Tate up and out. My gratitude goes beyond words.

Yesterday Tate saw cardiology and had an echo and today and tomorrow are appointments again at main and Thursday/Friday are IVIG infusions. It seems we’ve seen pain every 2 weeks for a bit now. Her pump meds only last a month before a refill is needed and today we’re increasing the rate once again. Tate is needing more oral narcotics, which we’re trying to avoid. She’s had a lot of lousy days and BP is once again super erratic. Pain is a ….pain. And we’re seeing some bigger symptoms that could indicate increasing disease in her brain. Super scary for Tate to experience and us to observe.

Tate pushes on and we are grateful to not have a December admission yet this year. First one in several years!