Post BMT day 274
+274
It was a busy week! Scans on Tuesday revealed lots of fluid in Tatum’s knee joints and complete osteopenia throughout her legs.(the only area we scanned. It’s everywhere.) The jury is out on what’s going on with her joints. She ticks every box as a risk factor for osteopenia from a transplant/past treatment/lifestyle list but also is at risk due to her classical Ehlers Danlos disease. IF it’s from transplant, etc it’s reversible. If it’s from the cEDS, it’s not. Time will tell. She’ll have full dexa scans to assess in March and likely MRI to further look at her joints.
Tuesdays bonus was we got to see our friends Anne & Adlyn. We met them when we were living in Brent’s Place. Adlyn is fighting an aggressive type of cancer and is 2/3 through her treatment. Please keep her in your prayers as she battles through the next phase of chemo. The girls had fun hanging out in the Teen Zone and took on the moms in foosball and created some 3D printer designs to have printed in the maker studio.
Thursday’s appointments involved picking up new glasses, pulmonary function tests (These are the least favorite-they’re oddly exhaustive,) and a BMT appointment. All went well. BMT labs looked decent and despite falling HGB, bought another week with no transfusions. This was a stressor for me this week and I felt truly relieved that labs looked as good as they did. PTL!
Tate has been doing well with eating! We are so so thrilled for this. It’s the bright spot we needed as a pick me up to keep going. We’re hoping it continues and we can start reducing the tpn &lipids soon. Tate has transitioned to the new pain meds. They unfortunately aren’t doing much to ease the terrible night pain. We’ll give it a few more days then it’ll be back to the drawing board. Tatum isn’t sleeping well and is often in tears with the night pain. Always a mixed bag