Post BMT Day +102
Day +102
BMT Clinic day today brought lots of surprises. Tate has been a little off all weekend. Sleeping 18-20 hours each day. Just so fatigued. Last night back pain worsened and made sleeping difficult. Night sweats. Today, labs showed why. All the liver labs….Enzymes ALT/AST, bilirubin, GGT, LDH all way high and higher than they’ve ever been for Tate. Platelets continue to drop. Bone marrow biopsy showed some decrease in the precursor to platelets, but bmt believes the problem is actually that they’re being destroyed peripherally or “going somewhere.”
So….more labs pending and a liver ultrasound early tomorrow morning. We saw high numbers in several of these labs a couple weeks ago. A new med brought them back within normal limits. She’s still on that med but it’s no longer helping. Starting to wean the steroids again could’ve opened the gate for Liver gvhd to speak up. Or her team thinks I could also be viral (cmv or EBV) in her liver, TMA or all of the above. We wait a couple days for viral titers to come back. Ultrasound is to look for a stone or sludge that is blocking the duct. Wouldn’t explain all of this, but some. If ultrasound gives us nothing and viral titers are low or undetectable, a liver biopsy is back on the table. TMA diagnosis is based on labs. Tate has most of the markers for diagnosis, but not all. As per the usual for Tate, she’s a bit out of the norm for an easy diagnosis and treatment. This was all a drastic shift from Thursdays labs and not at all anticipated today. The nice thing about being able to draw the labs here in the morning and have them couriered is her Dr and all the supporting staff already had a plan in place by the time we got to clinic.
On the good news end, Tate saw her intestinal rehab team today. Tate has rapidly lost weight in the last 10 days. It’s still steroid weight, so not really a problem yet. Bmt has zero threshold for any weight loss. GI is much more laid back. We appreciate this as the goal is to get tate off tpn and to increase J tube feeds. So, in a couple days we’ll get to cut tpn calories while keeping the fluid volume in hopes it’ll make Tate more hungry. We’ll increase overnight formula feeds bringing us a little closer to getting off the tpn.
The flamingos in the photo are from a fundraiser held for some courage classic riders. They’re then donated to the oncology kids. Tate brought “Thing One and Thing Two” home to beautify the Brent’s place garden. In the process, she glitterfied both the BMT clinic and the GI clinic.