Signs of increased inflammation

Day 53:

Today was heavy on the heels of yesterday. These posts are hard to write as I’d prefer to only convey sunshine and smiles. But I also want to be honest with what’s in front of us.

We’ve been talking with palliative care the last few days. Their job is to help put in place measures for comfort in getting home with chronic illness. After the BMT meeting yesterday, teams are moving forward with the plans that we’ll stay inpatient until transplant. Palliative came in today expecting to discharge us from their care since we’d be staying. We would like to go home. The option presented to us is to go home on hospice. For kids, it’s different than adults as it serves a dual purpose. It isn’t only used for end of life care. It would offer us better pain management as we wait for transplant. It’s used as a bridge for kids with critical illness to get to life saving treatments like transplant. They also want it in place should we need it pre or post transplant. We were given the kids version an advanced directive for Tate to fill out. Sobering and surreal that this is where things lie with our 14 year old.

Tates labs are showing signs of increased inflammation. Not the direction we’ve been praying for. “For I know the plans I have for you. Plans to give you hope and a future.”