I start today with gratitude
Day 22
Too tired to post last night, so here’s the catch-up.
Tate was supposed to have pulmonary function testing yesterday morning in the clinic. That means getting in a wheelchair and having an entourage (due to the controlled pain meds) accompany her down to the clinic. She was feeling too sick to go so we’ll give that a go again this afternoon.
On Wednesday during Tates other clinic appointments, she was pretty miserable. She said she was hungry for cake (from a girl not eating much,) and our incredibly sweet bmt nurse coordinator brought this in as a surprise today. She had a friend decorate with the butterfly just for Tate. Stacy is amazing! One of the kindest humans ever and is working so hard to coordinate donors and tests and rolls with every curveball Tate throws. We love her and are so grateful for her!
A new curveball was thrown in last night. Tate tested positive for active CMV. Cytomegalovirus is something about 90% of the population has had typically as a toddler. Shows as a mild cold. It then lies dormant for you and I. In an immunocompromised person it can become active and wreak havoc on the body. It’s especially dangerous with transplants. Tates copy load isn’t high, but needs to be treated before transplant. In addition, they’ve told us it’s likely she’ll battle this again after transplant. This does delay transplant but hopefully not more than the dates of Feb 15-22 we were just delayed to. We are praying her donors are positive for cmv antibodies to help her fight this once she receives her new marrow. We’ll learn more in rounds today.
Tim and I had a meeting yesterday to go over the chemo regimen. They’re hitting her hard with melphalan, thiotepa, fludarabine and ATG. She’ll start losing her hair pretty immediately and have to work through all the side effects during chemo week and for weeks after. It was an emotionally overwhelming meeting for both Tim and I. But we refuse to give in to fear and instead are hanging onto Hope. God has had this all planned out since day 1. Tates team is incredibly brilliant and compassionate and so very dedicated. I start today with gratitude.