What Not to Say to the Parent of a Child with Cancer

My son was diagnosed with brain cancer in April 2006, just a month after his tenth birthday. Even though he was flown from San Antonio to Houston, TX – to MD Anderson Cancer Center no less – it took me a couple of days to get it through my head that my child had cancer. I kept thinking, “It’s going to be a benign
‘growth’ . . . nothing malignant.” Seriously, how could my perfectly healthy son have cancer, right?

Wrong. Keeghan’s tumor was malignant. But after two surgeries, six weeks of radiation, and a year (so far) of chemotherapy, he is tumor free. It will be my daily – hourly? – wish, for the rest of my life, that he stays that way.

One of the hardest things to deal with when your child has cancer is the way in which other people react when you tell them, and the things that they say. It has been proven to me time after time that most people really don’t think before they open their mouths. They’ll say things like, “Oh, I knew someone that had the “c” word. She died.”

The “c” word. I’ve heard cancer referred to that way numerous times, as though actually saying it would cause a person to get it. It’s not contagious people!

At the grocery store one day, with Keeghan standing by my side, the cashier asks me, “Did he have an accident?”

Keeghan has a very large scar on the side of his head. It’s a nice scar as far as scars go. It’s perfectly symmetrical – four inches up on one side, five inches across, and another four inches down on the other side. It’s so perfect that my husband used to joke and say that it looked like a trap door. He’d tease Keeghan by telling people that that was where he kept his wallet.

So to be asked if he had an accident seemed pretty ludicrous. “Yes, he fell out of a tree and landed on a cookie cutter. Hence the perfect scar.”

I wish I had replied that way, but alas, I didn’t. “He had a brain tumor,” I say instead.

“Oh . . . is he going to be okay?” she then whispers.

Keeghan is ten years old. He has cancer. But he’s not deaf, nor is he a complete idiot! And he’s standing right next to me! Don’t talk about him like he’s not there or can’t understand you. He can. In fact, if you talk directly to him, he can answer any questions you might have about his story quite well. Luckily for me Keeghan replied to the woman’s question with a very ten-year-old appropriate, “Yep, I am.”

After the first three months of Keeghan’s treatment was finished, and before he started his year-long consolidation chemotherapy regimen, we moved from Texas to Washington, DC. Not long after we moved into our house, we got new neighbors. The kids and I were leaving the house to head to the hospital for chemo on the day I met the new neighbor Bob. He noticed that Keeghan had no hair, and that he wasn’t looking very happy. Keeghan never looks thrilled when he’s heading for chemo. Go figure.

I am of the opinion that it is better to just tell people up front that he has cancer rather than leave them trying to figure out how to ask. So I told Bob, “He has cancer – we’re on our way to the hospital now for his chemo treatment so he’s not in a very good mood.” 
Bob asks, “What kind of cancer?” I reply that it is brain cancer.

“Oh, wow. My old boss just died of that.”

I can only imagine what the look on my face was. Incredulous I’m sure. I was so glad that the kids were in the car by that time.

Are you completely stupid?” is what I should have asked the guy.

“Well, we’re hoping that isn’t going to happen to Keeghan,” was what I actually said. I’ve come to learn in the few months that we’ve now been neighbors that Bob never thinks before opening his mouth, so it wasn’t just that one incident. But that is the one that sticks in my mind.

What’s really funny to me, however, is how other parents of children with cancer are just as bad when it comes to the things they say. Soon after Keeghan was diagnosed, I ran into a woman at the clinic that I had known at a past assignment of ours, but hadn’t seen in a couple of years. Ironically, her daughter was the same age as Keeghan and had been diagnosed with leukemia a few months before Keeghan’s diagnosis. As we stood in the clinic talking, she asked me, “So what’s his prognosis? Haley’s is 30%. If we hadn’t gotten her diagnosed when we did, she would have died.”

All of that was said very quickly, in a tone of voice that was sort of like, “I’ll bet my kid is sicker than your kid.” Like this was a competition!

“Lady, if this is a contest to you, I hope that you win!”

You’re right, I didn’t actually say that. But I should have.

“I refuse to let the doctors put a number on Keeghan like that, and I don’t want Keeghan feeling like he doesn’t have a good chance to beat this. So I honestly don’t know what his prognosis is. In my mind, it will always be 100%.”

Even though I didn’t say what I should have said, I think what I did say got my point across. But she’s not the only one that has done that. Maybe it makes parents somehow feel better to play comparison, whose-child-is-more-sick, games like that. I can’t do it though. I want them ALL to be well.

Maybe there should be an awareness ribbon for foot-in-mouth disease. What color would it be – flesh? I don’t think that color is taken yet. Or perhaps someday I’ll write a book and call it “What Not to Say to the Parent of a Child With Cancer.” I doubt anyone would buy it though. Everyone thinks they know the right thing to say all the time.

So maybe I should title it, “Hey YOU! Don’t Be Stupid!” That might at least get someone to pick it up and read the back cover.

Maybe there’s no hope at all and people will continue forever to put their feet in their mouths. But perhaps a little awareness can turn the tide of stupidity.