Aila
Gene and I met during our first weeks at Yale, in 1994. He lived two floors below me, in Entryway E in Silliman College. His parents are from Korea, and he grew up in Minnesota and Seattle--a very different life from Bristol, but we somehow talked almost immediately with ease and comfort and unknowingly began a lifelong friendship. During a stint abroad in Korea, he met Hyemin, an amazing woman whom he eventually married in 2005. They live in Seattle now and have two beautiful kids, Molly and Solomon. We have spent at least fifteen of the last twenty Thanksgivings togther, first at my parents' house in Bristol and now in Seattle or San Francisco.
The absolutely insane thing is that I don't even know how many spinal taps Aila has had. One hypothesis is that that means I'm a terrible mother (Brian would say, "Of course you're going there first."). But honestly, even when I count backwards, I get confused. This is the first during Interim Maintenance. There were three during Consolidation. There were at least two during Induction, but she was under general anesthesia additional times when they did not access her cerebrospinal fluid, but rather drew bone marrow. I honestly don't remember, although I can detail every time I've been with her as she is put to sleep, both at Stanford and UCSF. I am horrified that this has become so commonplace that we no longer think it a major event when our 2-year-old is slated for general anesthesia.
I've realized that this blog is really about my emotional experience of Aila's cancer. I often seek and read other blogs of parents of kids with cancer, and I sometimes marvel at their agility at focusing on only facts and routine. (And then, I wonder why I think that's better.) If and when Aila chooses to read her mother's ramblings when she is older, she will really be faced with an expose of her mother's emotional life and her mother's perception of her family's emotional life. If she wants to understand what treatments she received, she'll have to read another blog!
Tomorrow Aila heads to UCSF with her grandfather for her Day 21 infusion of chemotherapy. She's done well with the last two, so with any luck we'll continue on that road. I told her tonight that Papa was going to take her to the doctor tomorrow and that they would be poking her in her port. She said "no, it hurts," and that she wanted "mama come." A little part of my soul hurts when she says this. She'll be fine with her grandfather, she really will. She loves him and he her. In psychology speak, I have all of these automatic thoughts about what "good mothers" would do in the same situation, about the importance of selflessness. But then, I think about how much I care about my work and what I do. I think about the fact that no one expects Brian to give up his career. And I think, I'll be home shortly after she's home. And that hopefully, one day, she'll think about the agony of my decision-making and at least understand.
I just looked up the meaning of this phrase, as I didn't fully know. It stems from early 19th-century tenement living in New York City, where the shoddy architecture led to tenants below hearing the thud of first one shoe, then another, in close succession. We've had a good week! I can honestly say that it's been the first okay week since Aila was diagnosed. She had diarrhea and bellyaches. And her hair kept on falling out. And of course she still can't walk. But she was happy! Wow, that makes all the difference! I remember somewhere in the middle of our endless LPCH induction hospital stay, asking when my little girl would be "back." They looked at me with blank faces. She had been laying in her bed for days on end, crying when her parents touched her, bloated beyond belief. Sure, this was biologically my little girl. But where had she gone? Well, this week she was back.