Sept. 15, 2015, 12:48 a.m.
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.
The absolute scariest part of Aila's cancer is the fear we feel as her parents. Some days, it overpowers me. Other days, I see it and feel it, but can move forward with purpose regardless of its enormity. We've been very fearful of the Day 29 Minimal Residual Disease (MRD) number, which in this case represents the percentage of leukaemic cells that are in her bone marrow after her 29-day chemotherapy Induction. She had a bone marrow aspiration (her 4th since Aug 9th) on her 29th day of treatment (last Wednesday), and we've been waiting with bated breath since. Late yesterday, we learned that Aila's Day 29 MRD was zero! This is wonderful and important, since the Day 29 MRD holds long-term prognostic utility for predicting how her body will likely respond to the years of chemotherapy ahead as well as predicting her longer-term "event-free survival," which means the number of years that she lives cancer-free without relapse. Finally, good news!
We've decided to switch Aila's care to UCSF Benioff Children's Hospital in San Francisco. This has been a big decision which we've given a great deal of thought. Without a doubt, there are excellent oncologists at both Stanford and UCSF. And as I write about our decision-making, I do so with full awareness of our own privilege in even having options at all. Nonetheless, as long as I'm talking about fear...I'm a little scared of Stanford. This is a scary statement for me as well, since this is where I work (albeit in a very different universe). Clinicians and providers can really only ever be as strong and effective as the system within which they practice. And Stanford's system has some problems! I won't simply complain in detail here for the sake of complaining (since it does no one any good), but I guess I'd say that we got the message early on at Stanford that we weren't at the top of their priority list. It's a teaching hospital, after all, and Aila's case is more or less a bread-and-butter case of childhood ALL...or at least this is the message we've gotten. Today was probably the best example--Brian had to page the doctor at Stanford at 4pm (after he had not heard from her all day) for Aila's MRD, which we had been waiting so patiently for all day. When she called him back, she said that she had received the results early that morning. Why hadn't she called?! (Incidentally, UCSF is a teaching hospital as well, but when we went for a consult, we felt that we were given care, attention, and priority.) Aila's care is the most important, without a doubt. But I guess I'd say that it's kind of equally important to find a system that takes care of our entire family. As Brian likes to say, "This may be run of the mill for you, but WE have never had another child with ALL." Well said, I think. If our family system falls apart because appointments are being scheduled and rescheduled last-minute (as they were at Stanford), general anesthesia procedures are not minimized (last week, two back-to-back procedures were scheduled for Aila on two consecutive days at Stanford), and everything feels generally more chaotic than it needs to...We're frankly not going to be taking very good care of Aila because we'll be so overwhelmed ourselves. To me, this is scary.
Before I close, I want to thank cyberspace for existing. I hardly knew, when accessing primitive email programs during my freshman year in college in 1994, that I would be able to reach so many people from my past and present by simply sharing a blog on Facebook (thanks, M. Zuckerberg). The support we have felt--from my hometown of Bristol, Connecticut; from high school and college classmates and colleagues around the country and world--has been astonishing. Keep it coming! Aila needs it. We need it. Cancer is scary. A child with cancer is even scarier. Thanks for loving us as we navigate our fear.
Fight, sweet baby...
Comments
Rosie 9 years, 2 months ago
What excellent news Victoria!! Been thinking of Aila, you and your family since hearing the news almost daily. Stay strong Cosgroverstreets!! And may I just say, your writing is excellent and so sincere and poignant. You are such a loving and wonderful mother. Keep fighting Aila-girl. xo
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