January 12, 2024
1 Year + 323
This photo is from a year ago. After Keira’s tumor removal and before we realized what a lasting impact that surgery would have on her. But Keira is doing well.
What strikes me in this photo is Tate. Walking unassisted on sand and rocks. I remember it being exhausting, but she could do it. She was still on TPN at that time, but walked frequently. We had a rental wheelchair as support. It gives me pause to see the decline in the past year. We wouldn’t be able to attempt this with Tate now. She’s back on TPN. Her power assist wheel for her personal wheelchair was supposed to be delivered this past week (ahem-canceled….again!) She didn’t explore the beach with Drew and Keira during our FL trip in Nov. She didn’t walk the beach. These memories are hard. Earlier memories when she was still hospitalized post transplant, I saw improvement. We’re close in the memories where we reach the turning point where things started to decline.
Here’s the positive spin on the tough stuff. We have a surgery date for the pain pump (a baclofen pump for those who like to look things up.) January 24th. Less than two weeks! We are nervous but thankful. Sad to need it but happy it’s available. Big, mixed emotions surrounding this. Ultimately, there’s a lot hanging on this being successful. Most of Tate’s plans start with, “Once I have my pump…..” Big big prayers this is successful. It won’t cure Tate. It’s a giant bandaid. But, could be absolutely life changing. Please God.
Tatum is getting very close to her two year mark for BMT (March 2nd.) That means another bone marrow biopsy. They’ll tack this on to surgery. One less sedation!
Yesterday, I received a call from our dear geneticist. The goal is to do the full genome sequencing also along with surgery. In Colorado! We were thinking we were going to have to go elsewhere for this and were working with Mayo in Rochester to get it covered. The hospital here in CO has approved to cover it!
Because Tates blood is now all donor DNA (male actually!) they have to use tissue samples for any genetic testing. They’ll gather those under anesthesia at the same time as this surgery.
Coordination of multiple disciplines in one OR space is challenging. We are beyond grateful for the efforts to knock out 3 at once!
This pump has been long awaited and is overdue. Tate continues to have significant issues with her GI system just not working well. It’s causing significant distress and discomfort. The dark side of morphine combined with gut dysmotility. The pump will deliver constant morphine, but at a much lower dose directly into her spine, eliminating the systemic side effects. I feel like this week, we squeak by each day avoiding an ER visit by using all our tools to get things to move just a bit to provide a smidge of relief. Come on Tate. Hold on. 12 days!