Aila
Last Friday on September 11th, Aila Muriel's great-grandmother (and my grandmother), Muriel, celebrated her 104th birthday, beginning her 105th year on this planet. My grandmother and I weren't very close when I was young, but we got much closer in the last twenty years. Early on and before I was born, she was never a huge fan (as I understand it) of my mother. But as my mother became sick and deteriorated, my grandmother seemed to understand my pain better than a lot of other people did. And we became very connected. When she heard that Aila was sick, she has called religiously every week and pestered my father even more for any and all information. We all (including her) often speculate about what has kept her alive for these 104+ years. She'll be the first to tell us that it's nothing she did and no special way that she lived but rather the luck of the draw. These last four or five years, she gets scared, I think, as her birthday approaches. Her fear makes sense to me--after all, she has no real control over her own mortality, which inevitably is closer with each passing year. Less control means more fear.
Late on September 4th and after 27 days, Aila was released from the hospital and we took her home. We're glad to be home, but I'd say it's even easier here to realize just how much has changed in such a very short period of time. Aila spends almost all day every day resting or sleeping or crying. She begins to cry if we even suggest that she bear weight on her legs. Often, I go to her and realize that her little body has erupted into a deep, unexplained sweat, which I gently wipe from her forehead. She is insatiably ravenous, demanding cheese, pepperoni, sausage, pasta, and pizza all day long. She does let me soothe her at night, which calms me as much as it does her, I think. But otherwise, I barely know this child.
We've been at Lucille Packard Children's Hospital for twenty-four days. The night that I took Aila to the ER, I was looking forward to heading home at some point later that night, eating some sushi, and watching an episode of MadMen or some other show after putting all three kids to bed. When we were eventually told that she would be admitted for further "tests," the ER nurse said that we should maybe prepare for at most a 4-night stay. We've been here for twenty-four days.
Minimal Residual Disease, or MRD, refers to the (hopefully) very small number of cancer cells that remain both during treatment or after remission. Without too much detail, Aila is in the Induction phase of her treatment, which is the very first phase and 29 days in length. On Day 1 (8/12), she intravenously received a drug called vincristine as well as a dose of cytarabine in her spine. On Day 8 (8/19), she received a dose of intravenous pegasparagase and a dose of methotrexate in her spine. Today, Day 15 (8/26), she received vincristine again. Many of these drugs seem to work by interfering with functions central to cell replication, like DNA synthesis. We've been waiting with baited breath for the Day 8 MRD, as this number seems to hold some long-term prognostic utility. Aila's is 0.11, which means that after 8 days of treatment, her peripheral blood is now only made up of .11% leukaemic cells. I'm actually not sure how many there were initially, to be honest (will add this to our notebook of questions), but suffice it to say that it was a ton. Aila's 0.11 MRD at Day 8 as well as double trisomies on chromosomes 4 and 10 (considered favorable cancer genetics) makes her thus far considered "Average Risk." Not "Low Risk," where a lower MRD is needed. But "Average Risk." Day 29, when they draw bone marrow and measure her MRD in the marrow, is the number that seems to really matter, however. This is two weeks from today.