by Amanda Parry
Sometimes, it can be really helpful to talk about your problems.
My husband recently discussed our daughter’s cancer with the gas company, and wouldn’t you know it, the next day a crew came out and fixed the gaping hole they had left in our yard a year ago. Never mind that they should have fixed it anyway or that they had been promising to for months. Tragedy got the ball rolling when nothing else worked.
Although effective, his strategy did cause some confusion when I asked how he had changed the company rep’s mind.
“I used the ‘c’ word,” he said.
“You called her a c–t?” I asked.
His eyes went wide.
“I told her our daughter has cancer.”
Oh, yeah. That “c” word.
Three years ago, our daughter was diagnosed with neuroblastoma at the age of 18 months. A type of pediatric cancer, neuroblastoma either grows aggressively or just lingers, sometimes taking years before it dies off on its own. The doctors are hopeful our Charlie has the latter. Already she has endured 12 rounds of intensive chemotherapy, six rounds of less intensive chemo and six surgeries. She is now off treatment, and the tumors aren’t growing. As a family we’ll be holding our breath for a few years, but as far as having your child get cancer goes, we are the lucky ones. (Don’t tell the gas company, though. They owe us.)
Please understand, I am not trying to make light of this disease or anyone’s struggle with it. It’s just that I’ve had a long time to deal with this, and crying inconsolably on the floor curled in a fetal position gets old after a few weeks. I’m also aware that any time I talk about Charlie’s cancer, I’m really only telling part of the story. She is the one who has been fighting this, and one day she’ll be able to tell the story herself, no doubt much better than I can. But for right now, I’m the one who can type, and the only perspective I can share is my own.
In the beginning, I didn’t want to talk about it. Talking about it made it real, and I didn’t want it to be real. It was easier to tell a few friends and family members and have them relay the news to those who needed to know.
Once she started treatment, her condition was obvious to all but the criminally stupid. She lost her hair and was painfully skinny. Of course, logic is no impediment to some, such as the old man smoking a cigarette in front of her doctor’s office who reprimanded me for her appearance.
“Why would you shave that poor child’s head?” he demanded.
I looked pointedly at the sign behind his head that read “Pediatric Oncology and Hematology.” Nothing. Tempted to say, “She lost a bet.” I instead explained in small words what should have been obvious. (Why, you might ask, would anyone smoke in front of a children’s cancer clinic? Sadly, her doctors share a building with cardiothoracic surgeons, so it’s not unusual for the pediatric patients to run a gauntlet of carcinogenic smoke to get to treatment. Whoever came up with that brilliant office sharing arrangement should be shot.)
But if I was out without her and saw people who didn’t already know, I wouldn’t tell them. It just seemed like an awkward thing to bring up in, say, the aisles of the supermarket. (“Jack just started transitional kindergarten, and Charlie is battling cancer. OMG, is that the new Hamburger Helper?”) The few times I did share the news were — bad. People got upset, understandably, and I felt lousy for ruining their day.
But once she was through the worst of her treatment and the tumors had stopped growing, it became easier to talk about her condition. Perhaps it was because I didn’t feel the need to escape it as much myself, and it’s easier to share good news than it is to punch people in the gut with tragedy.
I shy away from the term “cancer survivor.” For one thing, she’s not in remission, but also it seems like an insult to those who have passed away from the disease. There were many amazing children she met during her treatment — Gabby, Carter, Pieter, Miranda — who were just as fierce in their struggle and endured more in their tender years than any human being should in a lifetime. They didn’t lose their fight against cancer. The treatment stopped working.
The cancer found a new way to grow. Unfortunately, cancer is a powerful, indiscriminate dick — it wouldn’t pick on children otherwise — and has an enormous capacity to change the rules and overcome whatever is thrown at it. These children didn’t lose their struggle any more than Charlie won hers. She simply got lucky.
And yet that child put up the fight of a lifetime. Before she could even take her first steps, she had been pumped full of poison and poked with needles and sliced open in three different places. She endured weeks of confinement to a hospital bed when she should have been learning to walk, vomited for hours when she should have been figuring out her favorite foods.
There were times when I felt like saying, “It’s okay if you want to give up. I don’t want you to, but I would understand.” But this child in diapers who slept with her fingers entwined in my hair every night and cried when the end credits rolled on “Mickey Mouse Clubhouse” found some way to keep going.
You better be damn straight I am proud of her.
Amanda Parry, 39, grew up in Chestnut Hill and attended Germantown Friends School from kindergarten through 12th grade. Amanda is the mother of two special needs children: a 7-year-old son with autism and a 5-year-old daughter who has developmental delays due to an ongoing battle with cancer. Amanda started the blog UnexceptionalParenting.com to let off steam.