August 5, 2025
It’s been a bit. Summer is about over and we’ve been trying hard to fit in some new memories on the brighter days. There’s been a lot of real life mixed in and some hopeful things too. Photos haven’t been my priority -just soaking in the moments.
We’ve had a lot of faces at the Spiegelberg B&B, which we always love. That means lots of extra hugs for Tate and opportunity for some later night giggles too with adult cousins and aunties, adopted aunts and uncles and friends. Travel is tougher, so faces here fills our cup.
We finally made it to see Keira and stopped in at camp in between lots of medical for Keira. Her summer didn’t end as planned but we are thrilled to have her home again
Tate knocked out a pain pump refill, and a couple long days of infusions this week. We hadn’t been to main campus in a long bit as we’ve moved most things to virtual. We are grateful everyday for our Denver hospice/palliative team as the extra eyes and communication with Tates team means we’ve been home for 3.5 months!!!! Grateful!!! The shift isn’t that there hasn’t been reason to admit, but rather that we’re choosing home.
Tate has a couple procedures coming up that will land her back with anesthesia at main along with normal weekly appointments and therapies.
The hopeful stuff….Tate’s newest infusion has done something amazing! Pre BMT, Tate couldn’t tolerate the sun even through a car window. Instant nausea and a hot rash would develop with tissue swelling. It was better after transplant and slowly has come back over the years since. Earlier this summer, we were seeing the same effects minus the swelling and rash, but knew it wouldn’t be long before she was back to dealing with the terrible rash along with tge nausea. But…the saphnelo infusion has shut down that inflammatory response. This is HUGE and totally unexpected. You can’t conceptualize the change in your quality of life until you can’t go outside or ride in a car without feeling constantly sick and uncomfortable. We are SO SO grateful as Tate feels like she has a new lease on life. Tate’s pain team has also been working super hard to optimize tge meds in the implanted pump that constantly delivers meds into her spine. They’ve gone to Texas to learn from the experts as tate is the only peds patient in CO with this particular med in her pump. They are doing an amazing job and shes feeling more relief! Shes stopped taking the oral dilaudid and is weaning the patch in her cheek to hopefully, one day, ditch that one too. Youd never know her pain by the smiles she puts on. She’s a tough one.
We are headed to a WI/MN wedding for Tim to marry a dear nephew soon. The timing is perfect and we can’t wait to squeeze our boys. Tate and I missed the last two gatherings and haven’t hugged them since Christmas. Extra prayers that bith girls can have a healthy, happy trip.