BMT Day 17 VIDEO

Ashtyn was transferred to the Intensive Care Unit again today around 6:00 p.m. but I want to look at it in a positive way, ok?! Around lunch time her oncologist Adam Lamble stopped by to say Hi. We talked about how difficult this BMT has been. He said something interesting, paraphrasing, “In the ideal world, I don’t want Ashtyn to suffer, but if I came in here today and saw that this BMT was easy, I wouldn’t say anything but I’d be very concerned. Her BMT shouldn’t be easy, especially being her 3rd. The chemotherapy and radiation given were meant to destroy her leukemia and destroy her marrow. We want some struggle like we want some graft verses host disease. When chemo and radiation destroys what it should then the body should act somewhat destroyed too.” He didn’t expect she’d be in the ICU six hours later but I’m going to take what he said and be optimistic about this BMT and the struggles that have come with it. Comparing her three transplants: Ashtyn’s 1st transplant wasn’t as difficult as the 3rd. The biggest struggle was a deconditioned body and neuropathic pain in her feet. The 2nd transplant was no where near as difficult as the 1st or the 3rd. The biggest struggle was viruses that kept her in the hospital for a total of 50 days. This BMT has been straight up brutal from the beginning. She’s on the moderate, nearing the severe end of the spectrum for BMT side effects but hey, she’s still on the spectrum. Today included a CT scan of her lungs that showed concerning signs of possible infection and a worsening chest X-ray. She’s already on an antifungal medication and antibiotics so we’ll have to wait and watch to see what direction her lungs will go. Her respiratory efforts increased requiring her to go to the ICU for added respiratory support. They wanted to put her on BiPAP but she refused so she’s on high flow oxygen for now and tolerating it fine with good blood gases and saturations. Her heart has had a prolonged QT rhythm for a couple years and today, for the first time, it caused a couple quick ventricular tachycardia (extremely high heart rate) episodes which is another reason to watch her closely in the ICU. Her liver is ok. Her kidneys are struggling but holding up. Being in the ICU isn’t ideal but prayers are still being answered. Ashtyn is more and more alert, is sleeping decent, and has an obvious fighting spirit. Her skin breakdown is looking better. Pain is not as much of a problem. Today please pray 1. that her lungs will be strong and heal quickly from whatever it is that’s causing problems avoiding intubation. 2. her kidneys will be strong and do all that they need to do to avoid dialysis. 3. her body will balance itself where fluid will stay in her arteries and veins instead of leaking into body tissue where it doesn’t belong. 4. for Engraftment! (The way we know if a new marrow is engrafting is by seeing white blood cells in her blood labs. So far there are zero white blood cells of any kind. Once we see a good amount of white blood cells in her labs, she will be declared as “engrafted”.)