Friday, May 2, 2008


This is a topic I've been thinking about for a while now.

I belong to a listserv called Rhabdo-Kids, an email list for parents of children with rhabdomyosarcoma. Half a dozen times in the last six weeks, there have been discussions in various emails about how rhabdo (and sarcomas generally) don't have the funding that some other cancers have.

At least three times, someone on the list has used a sentence pretty close to this one: "Nobody knows much about rhabdo at our hospital; leukemia's the popular cancer."

I get their point, really I do. Rhabdo is not as well-funded and it's more mysterious. The treatments are often guesswork, especially when a child doesn't do well on the standard protocol or when there's a relapse.

But that phrase sets my teeth on edge. "Popular cancer."

Try telling that to my friend and neighbor whose son has leukemia. "Oh, don't worry, he'll be fine. He has a popular cancer."

Yes, it's true that ALL, the type of leukemia her son has, has been better studied and has a higher cure rate.

So what? He could still die. This is where I remember the oncologist in the first month at clinic who told us statistics don't always mean much. For every child who's ill, it's 100% or nothing. They get better or they don't. Does it matter to my friend that her son has only a 5-10% chance of dying as opposed to Jake's 20-30% chance? Is it possible to only worry 5%? I don't think so.

Here's what I would like to say to those who used the phrase "popular cancer" (but I won't, because I completely understand the stresses they're under and don't want to make them feel worse--so you get my rant instead!)

Would you feel better if your child had leukemia? Yes, more is known about it. Yes, more funding has been given over the years. You know what the difference is? More than 3000 children a year in the U.S. are diagnosed with leukemia. Between 250-300 a year are diagnosed with rhabdo. I don't think you're saying you want 10 times the children to fall to rhabdo. Yes, it would be great to have more funding for study of this particular cancer. But you know what? All the funding in the world can only do so much. There simply aren't as many kids to study with rhabdo. There are limits to what they can learn from a smaller population group.

I hate rhabdomyosarcoma. I hate that it's so aggressive, I hate that doctors don't always know what to do, I hate that some treatments fail.

But I don't hate that it's rare. I'm delighted that not as many children get it. I don't ever want to be a popular cancer, if that means that thousands more children each year have to go through what Jake is.

And for the love of heaven, don't tell someone whose child has leukemia that they're lucky because their kid got the popular cancer.

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