Sept. 1, 2015, 2:06 a.m.
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.
Aila hasn't walked in twenty-five days. As her mother, I'm as worried about this as I am about anything else. Of course, I know she'll walk again. And perhaps it's selfish, but until she's toddling around and chasing after Zander again, nothing will really seem normal. We're told and we've read that she is likely in pain, which is likely why she refuses to walk. No one is entirely sure just what is causing her pain, but it's probably some combination of the leukemia, the chemotherapy, the high-dose steroid, and general muscle atrophy from not bearing weight. She works each weekday with a physical therapist, who is good at getting her to stand and play...30 minutes after she has taken a dose of oxycodone for her pain.
During induction, which should be called the Hiroshima of leukemia treatment, Aila receives twice-daily doses of dexamethasone. This is a steroid, and steroids have made our sweet girl a small alien. She wants to eat all the time and eats enough food for three or four adults. Everything she wants is salty--sausage, soup, pretzels, pizza. She demands these foods at all hours of the day and night, and if she does not receive them, she yells and cries. Loudly. In three weeks, she has gained enough weight that her clothes no longer fit. She is irritable and angry a great deal of the time, and her sleep is interrupted by heavy night sweats and abrupt awakenings.
In the last year, Aila's beautiful hair has grown to her shoulders. It is flaxen--much lighter than either Brian's or mine ever was. Before this, she loved to "pick one" when I wanted to put her hair in a pony tail, usually choosing both a small clip and a "circle" hair elastic. We've known that she will lose her hair as a result of the chemotherapy, and although neither of us cares about her eventual baldness, we've been apprehensive and sad when we think of the inevitable hair loss. It began falling out with force late last week, and now comes out in long, sinewy strands when we give her a bath. Brian wanted to cut it last week, but I am afraid. I don't entirely understand my fear, truth be told. Maybe it's because she'll look sick for the world. She'll become "that kid." Maybe it's because her hair is so beautiful, and I'll miss for the rest of my life the flip she used to do with her hand to get her bangs out of her sweet eyes. Maybe it's because then I will clearly see her suffering every day and there will be no way to sneak inside my brain, if just for a moment, and pretend that all is okay. That this is all just a terrible nightmare from which I will awake.
Fight, Aila, fight, fight, fight...
Comments
vk 9 years, 2 months ago
"Hiroshima of leukemia treatment" - well now there is a metaphor that grabs your attention. I wish it wasn't juxtaposed with Aila's health but nonetheless your point is well taken.
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