After having an intensely busy day on the 6th, we got a good night sleep and woke up refreshed and ready for a new day. We took our time packing up, caught a shuttle to the hospital, and checked in around 12:00 p.m.. Ashtyn felt comfortable the moment she got into her room. Not only is the room nice and cozy, she also has some post traumatic stress associated with cancer treatment. She has crashed quickly several times in the past which required her to be rushed to the pediatric intensive care unit. Being in the hospital while she is immunocompromised and having cancer treatment brings her comfort.
Our day went smooth and was somewhat peaceful. She had an EKG, heart echo, IV fluids, oral medications, and a dental consult to remove her braces. Other than the typical interruptions from the health care team, she was able to sleep and relax most of the day. At midnight a complete blood cell count showed a significant hematocrit drop during the past 12 hours with a value of 20.0 down from 22.6, which had also notably dropped from 25.7 the day before. I am grateful her body stayed extremely strong in Salt Lake while we waited for her to start the study. What's the chances that the very day she was admitted into the hospital was the day she would need a blood transfusion? Along with her low hematocrit, I've noticed a remarkable difference in how she is feeling. During the past 48 hours, she has probably slept 38 hours. When Ashtyn is awake she doesn't feel well, is nauseated, feels out of breath with any activity, and is super fatigued. Her physical change and the sudden drop in her RBC's is alarming to me causing quite a bit of concern. Treatment has not started so I'm hoping the change in her is simply leukemia sick rather than any other problem. I talked with the resident and will again discuss her status with the team in the morning. It is currently 2:00 a.m.. I'm going to try and get some sleep while she gets a blood transfusion. Please pray that 1. Ashtyn's body will tolerate the study drug Venetoclax that begins today. 2. She will stay healthy and stable. 3. Venetoclax will be effective at killing her leukemia cells. 4. Her healthcare team will be blessed, inspired, and in-tune.
