I just wanted to share that we finally got the news that the flow cytometry was normal! That is where they put the marrow sample through a meter that is really sensitive to count all the various types of cells. And the result was that they are no longer thinking she is relapsing. We actually have already gotten the results of her MLL gene test (it usually takes over a week), and this was normal too.
So this is fabulous news! We have no idea what caused the cells to look so abnormal Monday morning. I am not going to worry about that, and we just hope it will not happen again. We have had bone marrow aspirations to rule out relapse before, but each time it was because her bone marrow was not producing much and we were not sure why. This is the first time we have actually seen possible leukemic cells in her blood and had to rule out relapse. I will say I genuinely hope and pray we never have to go through this again. It was a very difficult few days for us.
We are already back from the beach. Unfortunately Maddie’s seizures have been ridiculously out of control the last week or two. She was not sleeping well at the beach, so we decided to come on back to Charlotte in hopes that getting her back to a normal routine might help.
Thanks so much to my uncle for sharing his fabulous house with us. Even with seizures every hour, it felt a little more relaxing in that beautiful setting with gorgeous views of the ocean and the ICWW from every room. We did not really resolve the housing dilemma yet, but we hope to soon.
Next Monday, we see the oncologist and draw blood counts again. Then on Thursday Maddie has her first session of “play therapy” with a therapist from Early Intervention. We are excited to see what she thinks of it. Then later Thursday afternoon, Maddie will go to see the Neuro-Opthalmologist to see what is going on with her eyes. We are not suspecting that she has trouble seeing, but she has some unusual things going on with her eyes that we want to stay on top of.
Thanks for checking in on us and for continuing to pray for our little girl.
Love to everyone,
Liz, Brandon, and Maddie