Yesterday sucked! It was a total shitty day. Although she only had an echo and ultrasound of her heart she hated them and felt very defeated. In addition she got homesick and was just down. It’s hard to watch your child be down and know you can’t do anything about it.
Today was a productive day. I’m not sure there’s a single specialist in the hospital Ava has not met with. Today we had visits from the doctors on rounds, a psychiatrist, her psychologist, her social worker, physical therapy, radiology, child life specialist, pharmacy techs, and her primary oncologist. She’s learned how to self inject anti clotting meds, been given liquid in take goals, calorie challenges, and exercises to improve her mobility. You’d think she’d be exhausted and though she probably is, today is also the first day in awhile I’ve seen the fire back in her eyes. It makes me so happy.
Today also got the results of her BMA. In order to be considered MRD (minimal residual disease) she needed to have .1 or less leukemia detected. Ava has 1.6% leukemia in her bone marrow. When she was first diagnosed 100% of her bone marrow was leukemia. Her oncologist told us that while it wasn’t the best news, studies show that her specific type of chromosome her leukemia had takes longer to get to MRD and responds best to the two chemo drugs she’s supposed to get over the next 8 weeks. These are two she’s not had yet. We also know that Ava had leukemia for 7 months before starting treatment, so curing her in 29 days probably wasn’t going to happen. Even though she’s not MRD, technically she is in remission. They consider that is anything that is below 5% leukemia in the marrow. In end we are encouraged that 98% of her leukemia is gone and the next set of chemo drugs are the best for her specific type.
Ava’s doing just fine with the news and said its okay I told you I’m going to beat this, I had no doubt. Kev and I are in a good place and giving thanks for today’s results. We see it as a positive and know that God’s got this.
We got to spend the afternoon with Ko, Ellie, and her Avi. This was very helpful for her morale and provided the normalcy she craves. We continue to thank you for all your prayers, well wishes, meals, and support. We couldn’t have made it this far without them.