Wednesday, September 9, 2015

Childhood Cancer Awareness Month

September is Gold.

Gold for Children with Cancer. Those in treatment, those in remission, those who have survived and the too many who have not.

Childhood Cancer is not the only significant affliction of our family past and present, but it is--perhaps ironically--the simplest to talk about. Or, in my case, write about.

Seven years ago, I had four children between the ages of seven and fifteen. Three of those children lost a great deal of my time and attention that year of 2008. All four of my children lost a bit of their innocence. And what was gained?

Jake's life. Compassion. Empathy. An awareness of how the sweet and the bitter of life are much too entangled to ever separate.


     Monday, January 21, 2008 was a holiday, Martin Luther King Day. It was also the day I’d been dreading since the moment I heard the word cancer. (Did I ever hear the word cancer? Interesting, now that I think about it. Did any doctor use that generic word? I don’t think so. It was always specific. Always Alveolar Rhabdomyosarcoma.)
     I get the feeling I’m going to be digressing a lot while I write this.
     Hair should not have been one of my biggest concerns at this point. It had only been nineteen days since Jake’s diagnosis, nineteen days in which we’d been bombarded with information and emotions and experiences we’d never expected to have. What’s the big deal with hair?
     I’ll never forget the first bald child I saw in ICS at Primary Children’s. It was the day of Jake’s diagnosis, January 2nd. A Wednesday. I hadn’t slept since Monday night. Tuesday night was spent in two ERs and driving and waiting. We began Wednesday in the surgical unit expecting a biopsy later that day. By Wednesday afternoon we were officially part of the Immune-Compromised Service on the 4th floor. My husband drove up. I was, apparently, functioning enough that I still had to do things like drink and pee.
     I walked out of Jake’s room in the B-pod to get a drink and at the charge nurse’s desk there was a father with a little girl, maybe four or five, with a bright pink fabric headband on her bald head.
     I wept. Because no little girl should be bald. Because no child should lose their hair from toxic drugs. Because my son was a cancer child and someday soon, everyone would know it just by looking at him.
     I played it brave. We suggested to Jake that he preemptively shave, that he get a mohawk, that he choose a pattern to shave into the side of his head while he still could. He wouldn’t talk about it. He just said he’d wait.
     He didn’t have to wait long. By January 21st, he’d had one complete round of VAC in the hospital and two clinic visits for vincristine and d-actinomycin. How much damage could three treatments of chemo drugs do? I thought we’d have longer.
     Jake came to church on Sunday, January 20th, the first time since his diagnosis. His friends were delighted. They sat on the back row, all these brave, smart, handsome 11-year-old boys. As I finished music time, I walked to the back of the room. And then I heard voices: “Sister Andersen, look!”
     Jake had pulled out a clump of his hair.
     You know what I remember about those boys? That they thought it was cool. And I loved that. They weren’t afraid, or freaked out, or disgusted. They thought it was cool. So I swallowed and smiled and my heart broke one little bit more.
     Which brings us to January 21st. Thank goodness it was a holiday, because my husband was home. I couldn’t have done it alone. I didn’t want to do it at all. Jake’s friends wanted to shave their heads, too. I suggested we get everyone together for a party. When he said no, I suggested I take him to a salon. He said he wanted to be alone and he wanted me to do it.
     So I shaved my son’s head. His head of beautiful, straight, exceptionally thick hair. The only one of my children who had my dark hair. On the floor. Caught on towels. Drifting through the kitchen so that for the next week I’d see bits of it wafting in a draft.
     I don’t know how Jake felt. I can guess, in his desire for solitude, in his devout wish not to anticipate the moment, a hope that maybe it wouldn’t happen. Maybe time would turn back. Maybe none of this was really happening.
     His friends did shave their heads several weeks later during a scout activity. Jake was there and I think (thought it’s only a guess) that he felt a little more in control because he’d done it already and he was still functioning. Heaven knows he had precious little control of anything much; I couldn’t begrudge him what he did have.
     When I looked at that row of brave, smart, handsome, bald 11-year-old boys, I wept again. Because they saw Jake, and they didn’t flinch. He was a cancer child—but he was their friend first. I told them: “Someday you will have children, and when you do you will know how I feel about you today.”
     On the Friday of Jake’s first stay in the hospital, a little boy checked into the room across the hall. He was there for a follow-up stay, as Jake would be fourteen times in the coming months. As little as this boy was, he knew the drill. He’d already grabbed a tricycle and he walked around the halls without fear.
     On top of his bald head was a beautiful blue arrow edged in red, painted there by his mother.

     Did I think cancer child when I saw him? Yes. But only for a moment, and then I saw the child himself and knew that cancer wasn’t who he was, it was something he was doing. And he was doing it great. And I hoped, someday, we could say the same.

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