June 20, 2017, 12:57 p.m.
Today we danced. While we waited for the oncologists and anesthesiologists and nurses to sort out some behind-the-scenes drama regarding who was first in line for their spinal tap, we danced. Cha-cha cha-cha-cha. I held her hands and we both together jumped high in the air and laughed, stopping only briefly to quickly sign a surgical consent form. Spinal taps have become so routine in Aila's little life that she dances in the pre-op room, and I barely look at the surgical consent since I know every step and risk like the back of my hand.
I was thinking about the concept of bravery today as I held my daughter in my lap, restraining her hands, while the surgical team held a gas mask over her nose and mouth. I was thinking about what she knows, what she thinks, as she participates in this experience once again. So many spinal taps that we have all literally lost count. Brave feels like the wrong word, although it's the one that everyone likes to use. Brave seems to imply that she has some high-level understanding of what's happening, what all this means. That she'll understand that the malaise, emotional chaos, and gastrointestinal distress that will inevitably ensue during the upcoming days are a direct result of the poison injected into her veins during this visit. To me, bravery instead seems like a choice she will make when she begins to ask questions later on...about what she has endured...slowly piecing together its meaning for her life. A choice about how she'll move through its remainder, knowing what she does about her past. Bravely, one step at a time, taking care of her body and her soul with the help of those who love her...or at least I hope that's what she'll choose. But now...well, she's four years old, and I'm not sure what she knows and understands. This morning as I was getting dressed to drive her up to UCSF, she stood outside the bathroom and said, "Decky can't come because he doesn't have cancer, right Mom?" Technically, yes. Decky doesn't have cancer, so he will not be getting a spinal tap and will not be joining us for today's UCSF adventures. But she doesn't seem to understand that it's a good thing that Decky doesn't have cancer, that he is a robust little boy with a sly smile and healthy white cells.
I haven't written nearly as much in recent months as I did earlier on. I think I'm guilty of judging my own thoughts, before I even write. Thinking that I must sound like a broken record, since we are after all still doing the same thing over and over and over again. Brian and I often talk about a very strange part of this whole experience, which is a deep and profound feeling of confusion about whether or not Aila's leukemia is even a big deal. Maybe you'll read this and think that I'm trying to be funny, but I'm not. I really don't know if it's a big deal or not. I mean, it's still all I think about most of the time, no matter what I'm doing. And the rhythm of our family's life has depended upon Aila's treatment for almost two years. But then, it feels like the world around us assumes that all is resolved. It's been so long, after all. And she has hair now. Not a big deal. A regular family with little kids who yell and fight and play. But...nightly 6-mercaptopurine, spinal taps, infusions. Holding our breath, waiting for her white blood numbers after each blood draw. Brothers and sister who fight about who gets to come to infusion clinic visits with Mom and Dad on chemo days. Constant worry that the blasts that were in her marrow are still there. A little girl who somehow finds and loves Youtube videos on the Ipad of tiny kids undergoing medical procedures in doctors' offices. Maybe it's a big deal?
I'm judging my own thoughts as I write this post, that's how profound this confusion is. I suppose it feels like if we do anything normal, like buy a car (which we just did, since we didn't have one that would carry all of our kids), the world around us considers this further evidence that everything is okay.
The last two years have reminded me that we all, every last one of us, have quiet struggles invisible to those around us. Ours is Aila's blood cancer, and it's still a big deal. At least I think it is.
Comments
Angela Tana 7 years, 4 months ago
Thank you for sharing Vicky. My neighbors daughter who endured blood cancer at a young age along with the fallout of the intensive three year long treatment is now in her thirties and has a child of her own. Their worry had never gone away. When their daughter was pregnant they were all bewildered because the medical community wasn't sure if it would happen for her. Day by day is really the only way I assume. I'm still thinking about you and your family and trust me Aila is always in my thoughts.
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