Tomorrow Ava and Kevin will head to Hopkins for her monthly IVIg and labs. Within a couple of days, we’ll learn if her CAR-T cells are still doing their job and keeping away her B-cells. Then next Monday, we will go in for her 12-month bone marrow aspiration and lumbar puncture. It’s a big one. Depending on those results, we will know if she has had any bone marrow changes and if she will be headed to a bone marrow transplant. It feels as if I’m walking around, holding my breath. Until we get those results, I won’t be able to exhale. The Lord has been by my side this past month. He’s been able to keep me focused on the day, sometimes the hour, and kept my anxiety at bay. Now more than ever, though, I pray for his guidance and peace; as I’ve discussed so many times before, the uncertainty is killer. The feeling of helplessness is demoralizing and can consume me in an instant.
I try my best to live in the present. I’m sure Ava gets annoyed by how often I look at her. Annoyed by how often I ask, “are you feeling okay?”. I know she’s tired of me continually touching her arm or forehead to check for fevers. All to ease my anxiety and remind myself she’s doing so well. It’s beyond my understanding that even though she looks so good, feels so good, and looks so strong, there could be malignancy going on deep inside her bone marrow. Her giggles, her laugh, her joy makes it so hard to believe that in a month, we could be completely depleting her immune system and risking her life to save her. It’s hard, friends. Frankly, it’s unbelievable. And yet, here we are.
On December 7, 2019 we learned Ava would need to have CAR-T over Christmas. On Christmas Eve no less. And now a year later, she will be going back to have a BMA that will decide where we go next.
The timing, she received her CAR-T on Christmas Eve and the fact she went in and had her original team with her means something to me. That thrill of hope I held on to last year is what I’m clinging to once again this year. The knowledge that no matter what God has her, has us, and has her doctors is my constant mantra.
We’d love your prayers for no B cells, no leukemia cells, and more than anything a healthy Ava that doesn’t require a BMT. And if you have an extra prayer for my mama’s heart, I’d love it.