August 16, 2024
August 16, 2024
Day 4
The quick version is 24 hour cultures showed no growth today, still waiting on 48 hour. Bone marrow biopsy went as expected and Tate slept until 5 PM today. She’s having some new GI symptoms and didn’t really eat today, but we’re hoping it’s just an antibiotic side effect and not something new.
The longer version involves all the emotions that went into today.
Today was somewhere around Tate’s 26th sedation. I held her hand as they injected the medication through her line that would put her to sleep. It burns. She automatically knows to count and the chemicals take over her body. As I watched her eyes close and body go still, the emotions surrounding it got me today. It doesn’t become routine or get easy. It comes with an uneasiness wondering if what comes next is going to change everything.
While I was holding Tates hand, Tim was with a dear member and his family as he took his last breath. The contrast felt emotionally striking. God Bless that dear family.
This time of year is always tough for us as everyone shares the excitement of a new school year. I had lots of memories pop up from this day. 7 Years ago was the last traditional “1st day of school” Tate had. 5th grade. That was after two years of little classroom time due to being so sick. This start came with a lot of trepidation too. By the beginning of Oct, we had withdrawn her from school completely. There were blessings that came from the change in our school path. But it also is a timestamp of a lot of loss.
This year makes 4 years in a row she’s been in the hospital this week. Last year was another big uptick in neurological symptoms, pain and a line infection. Two years ago, Keira and Drew were in a terrible car accident. Later we learned it was due to Keira passing out from an undiagnosed brain tumor. Tate was really fresh out of transplant and was experiencing all the movement disorder symptoms and inflammation in her CNS. 3 Years ago she had been inpatient for a few weeks with significant GI ulcers and pain. We had recently learned she needed a transplant. She’d be discharged in another month and a half on hospice. She wasn’t sleeping At. All. Those lights in the photo were supposed to help soothe her. I think we bought a couple hours one night or something like that.
Looking back it all feels like so much. Looking forward often feels the same. We really sit in the moment. That keeps us grateful and grounded and finding the joy in the moments.