February 27, 2026
I’ve really struggled with how to share this post. I want to be able to explain what it means for Tate and our family in a positive way but also convey the heaviness and difficult emotions that come with it.
During the care conference we had before Tate’s last discharge from the hospital on Feb 16th, it was suggested by Tate’s entire team that she move into hospice. This was suggested by palliative last summer after Tate’s 3 month admission and a really rough summer that had everyone holding their breath. But never by her entire team. We weren’t ready then. I don’t think it’s something you’re ever ready for, but after lots of tears shared with her team, we did move Tate into hospice this past week.
Yes, we’ve been here before, as we were heading into transplant, strictly for pain management. That was very different as we were working towards a place of healing. We believed at that time it was temporary as Bone marrow transplant was going to heal her. It was just a vehicle to get her there. And we did get there. And it gave Tate more time.
We’re now landing here again for a different reason . It’s now due to decline and few options on our own to improve quality of life and comfort at home. And due to no straightforward path to healing any longer.
What it doesn’t mean….
Tate hasn’t been given an end of life timeline and due to the nature of her disease processes likely never will. Instead, she’s at high risk for an acute, sudden episode. She qualifies for hospice due to the acuity of her health, the life limiting factor of her diseases, the ongoing decline, decrease in functionality and lack of curative options. Hospice isn’t just liberally handed out. This wasn’t a happy or easy decision for us. It’s heavy and we are sad.
Until age 21, Tate can still receive hospital and specialist care concurrent with hospice. It’s a both and situation. We will still try to optimize her care within reason.
Tate will still see Meg (OT) and Abbey (PT) weekly. She will still have appointments with her specialists. In addition, hospice can add in music and massage therapy as well as more support for the rest of the family. They are available to us 24/7. And we will have our hospice nurse here weekly. Tonight we received a pain med refill handed to me at our door. The attention and response has already been impactful Seems small, but it’s big. And I’m grateful to feel a little less weight.
Tate may at some point go into the inpatient hospice facility in Denver for a time. This would be to optimize her care so a safe and solid plan could be brought home. This was offered this past week as Tate was in a tough spot. But we needed more time emotionally and hospice figured out a good outpatient plan instead.
This has been a really difficult step for our family. On the practical side, it makes complete sense. On the emotional side, our hearts feel raw and crushed. You don’t land here because things are going well or because Tate is improving. We’ve had responses of empathy and understanding and we’ve gotten dismissive statements because that’s easier for the giver to deal with. But please know, to walk this path with your child and land where we have is sad and discouraging and defeating. But we still have hope. We aren’t giving up on Tate…ever. Each day is worth living and celebrating and we still have plans and dreams we’re working towards for Tate. It’s what keeps her going. Thank you for loving her and us along this path. We know God wanted better for her. We’re here because of a broken world, not because of “his” plan. We know despite it all, he holds her close with every step.