God, we're tired of this endless routine. Truly tired, indelibly endless. Chemo on Tuesday, crazy Aila on Wednesday, fever on Thursday. 99.5, 100.4, 99.9. It's early Friday morning. Is it going up? Down? When it's over 101, then we call and take her to the ER 100% of the time. Is it a fever that matters? I hate to sound so callous, but sometimes I feel like we're protecting the liability of the medical establishment rather than the well-being of my daughter. From the get-go, my friends in college told me that I was "jaded," and I always hated that moniker. But I think it's true right now? Miriam defines "jaded" as "made dull, apathetic, or cynical by experience or by surfeit." And wow, there has been an abundance of hospitals, doctors, needles, antibiotics, vitals, drugs...a sure surfeit. And yes, we are sapped.
Is there honor in having persisted? I guess that may be Brian's and my enduring question, and perhaps mine more than Brian's. Should I have stopped midstream, when she was diagnosed? Is that what my daughter needed? I feel like I should update Sheryl Sandberg on this variety of "leaning in," although my guess is that she gets it, having lost her husband.
It's a vaccuum, a child's leukemia. I still barely know that the world moves on, unless I'm reminded as I was today. Our research group had an out-of-country collaborator visiting, and folks had organized a happy hour. I had clients until late, Aila's temperature was rising, and I simply could not possibly imagine interacting with anyone in any "normal" way. I didn't want to talk about Aila with them, I didn't want to talk about anything else at all, and I just wanted to spend time alone or with my kids and Brian. This is what I did, running first and then heading home to our family.
Oh my god, it is so hard to see my daughter SO sick, day after day. Will it EVER end? Thank you to those who love us who seem to be able to tolerate and "get" the endlessness. That it's not over, not done, in any way. Two things happened in the past week that are worth writing about. On Saturday, Aila and I went to Whole Foods. I don't remember why she came with me, as we often try to shield her from public spaces these days because of her immunity. But nevertheless, she sat in the cart and helped me load the items onto the check-out belt. Debbie, the check-out woman at Whole Foods in that aisle on that night, saw her. Really SAW her. She said again and again how lucky she was that Aila had come into her aisle that night and that it was the best part of her day. We talked (somehow) about how Aila wanted blue hair when her hair returned, although we never talked about her diagnosis. When we were ready to leave, she made Aila laugh, put our bag into our cart, and touched my arm while looking at me for just longer than usual. When we got home, I wept while telling Brian about Debbie. Somehow, she had seen a part of my daughter and our experience that often feels so hidden and secretive from anyone but us. The second experience worth writing about was our reaction to a fundraising letter from Stanford that arrived yesterday. During our initial visit (Aila's and mine) to the Stanford ER in August, the billing woman spelled Brian's name incorrectly (Bryan Oversheet). Yesterday, a fundraising letter addressed to Bryan Oversheet arrived, and enclosed was a story of a boy who had developed Aila's cancer (ALL) at age 3, then relapsed again at age 6, I think. At the top of the letter was written in bold caps, "It began as every parent's worst nightmare." It might sound silly to those who are reading this, but we were both disgusted. First, at having to read about how someone with Aila's cancer had relapsed (which we know can happpen) and then, to think that this baby's and family's experience was being exploited for generating funds for a hospital, which may or may not use these funds for pediatric cancer. Jaded. Gene and Daniel were right, over twenty years ago. But twenty years later, I still think I'm right in seeing some things in the world the way I do.
So, fever checked 20 minutes ago. 100.7. ER visit in the AM likely. Goddamnit. Port accessed, IV antibiotics administered. Hours and hours and hours. I think it's fair that Brian and I (and Aila) are exhausted from this routine. Please, universe, let it end?
Comments
Angela Tana 8 years, 7 months ago
Vicky I usually can try and find something positive or humorous to let you know I'm listening but this post really got to me. You're right about everything you stated. I can't believe that a three year torturous treatment plan is the only way we know how to help a child get rid of cancer. I hope Aila grows strong and I hope she starts taking a turn for the better. Sometimes just a small change is all we need to keep going.
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