Tuesday, May 15, 2007

Kids Get Cancer, Too ... Right?

More importantly, kids are cancer survivors, too.

I'm too pissed to be snarky. YAY, cancer and living with cancer is getting lots of press. Newsweek devoted a whole issue to the subject. Ted Koppel just had a 3 hour special on Living with Cancer on the Discovery Channel.

Guess how much space in Newsweek was devoted to childhood cancer?

Guess how much time on Ted Koppel's special was devoted to childhood cancer?

Answer: not a single page, not a single mention. Nothing! At all!

Childhood cancer is not some completely separate disease, folks. Much of the research that comes from childhood cancer is used to help those fighting adult cancer. And yet ... not a whole lot of money for childhood cancer.

Many of us cancer-parents who just participated in the Relay for Life were curious how much of the research money goes to childhood cancer research. We wrote to the American Cancer Society. The letter back bragged that out of all the money they give for research, a full 4% goes to childhood cancer.

I'm not saying out of all their money, period ... out of specifically the money that goes to research, only 4% goes to childhood cancer research.

The image of adults living with cancer is getting a boost right now, thanks to Tony Snow and Elizabeth Edwards. And Sheryl Crow and Kylie Minogue and Melissa Etheridge and of course, Lance Armstrong.

Strong! Cancer survivors are strong!

But we don't see childhood cancer survivors like that ... heck, we don't see childhood cancer survivors, despite the wonderful survival rates they now have. What we see is bald, big eyed children, being pushed in wheelchairs, in ads for St. Jude's.

Aren't they brave? Poor dears!

I was annoyed when I read what was otherwise a wonderful issue of Newsweek, then irritated when I went to the Discovery Channel's "Cancer collage." I tried to sign up Little Warrior. Birthdate: I put hers in. Sorry, you must be 18 to fill this in. Okay, internet safety and all that. I put in my birthdate. Where was the place to put in her birthdate? None. Okay, where can I put in her age? None.

Now, if you go to that collage, you can filter all the pictures/stories according to gender, cancer type, cancer treatment, AGE. Okay! So I move the filter all the way to the left, since it goes from lowest to highest. Lowest: age 18 - 30.

OH. I FORGOT. YOU AREN'T ALLOWED TO GET CANCER UNTIL YOU'RE OF LEGAL AGE.

So, I tivo the three hour Koppel show. It's called Living with Cancer. I figured, surely they're going to make some mention of childhood cancer, right? After all, if things go the way you hope, then a childhood cancer survivor will live the longest time period as a cancer survivor, right?

You stupid, stupid, mother.

Children don't live with cancer. Once they get cancer, they become non-humans, just bald, alien-looking creatures. It hurts our hearts to look at them. We flip the channel.

Where's our goddamn "childhood cancer" M&Ms? Where's our Campbell's soup cans? Where's our people cheering us on, because these kids are survivors? The 4 year old who can't go to Chuck E. Cheese because there's too many germs there? The 7 year old who spends Halloween "trick or treating" the nurses? The 16 year old girl who wears a wig to her prom and fills out college applications while in quarantine for her stem-cell rescue? What about my almost-two year old daughter whose first identifying memories are sure to be MRIs, IVs and CT scans? What about I and my husband, who in amongst all the other things you have to do as parents, need to figure out how to best "spin" this whole "you are a cancer survivor" thing?

And, we are the lucky ones. At the same time I was getting the news that LW's scans were clear, another Wilms' family, right here in my town, were making the excrutiating decision to let their child go. Prayers for Caroline's family.

"Living with Cancer" and not a single reference to a child having cancer?

For shame.

10 comments:

Kaleigh said...

Um, yeah. What she said.

I work at St. Jude, and the most frequently asked question I get is, "Isn't it depressing working there with all those sick kids?"

No. Not even a tiny bit.

Because most of the kids are getting better. They're fighting. They're winning, a lot of the time. (And most of them aren't bald!) And they also manage to be completely CHILDREN the whole time, too. Eating chicken strips and fries. Riding trikes at top speed through the halls.

If only all the sick kids could be here.

Jimbo & Family said...

AMEN!

Chalicechick said...

Ok, this might be a stupid question, and I don't at all mean to be snarky in asking it, but how does childhood cancer differ from regular cancer?

If a child and an adult both have lung cancer, don't they have the same disease? If I give money for lung cancer research and it is done on adults, doesn't that ultimately help both of them, and if not them, then a child and adult in a similar situation 20 years from now.

Thanks,

CC

Erin said...

Hi- I found your blog through another Wilms' parent blog. I'm a Wilms' survivor (stage 3 FH back in 1983). This has always, always been my pet peeve. Every time I read an article about cancer or cancer research, they very rarely mention childhood cancers , particularly anything other than leukemia. I turn 30 next Tuesday, I've spent 24 years as a cancer survivor.

Anna Belle said...

IMO you would be a fabulous patient advocate (if you aren't already). I saw some info on the CureSearch site about being one. It's under Support CureSearch, Raise Awareness, Advocates.

Anonymous said...

To those curious about adult v. childhood cancer. The answer is, no, they are NOT THE SAME.

Childhood cancer requires different doses of chemo drugs, some so toxic they need rescue medication given after them to keep the chemo from killing you. Also, as a child there is the whole "I will be alive for the next 70 years" problem. Chemo and radiation have long-term affects that may present themselves some 20 to 30 or even 40 years later. For an adult, this isn't so much of an issue but for a 4-year-old who may be looking at a new kind of cancer in his/her early 20s might wonder if cancer as a 4-year-old really required that radiation therapy that now produced his/her brain tumor.

Besides, cancers like Wilm's are childhood cancers that, if not given the money for research, will not be researched. The statistics and prognoses for children with some types of cancer are either better than or worse than an adult with the same type of cancer. Perhaps the treatment doesn't need to be as aggressive with a child, etc.

So please, let it be known that childhood cancer IS DIFFERENT if not only for the reasons just listed, but also because these are children, and they are my heroes and deserve to be STRONG like all the adults that overshadow these wonderful, spirited youth.

Anonymous said...

To those curious about adult v. childhood cancer. The answer is, no, they are NOT THE SAME.

Childhood cancer requires different doses of chemo drugs, some so toxic they need rescue medication given after them to keep the chemo from killing you. Also, as a child there is the whole "I will be alive for the next 70 years" problem. Chemo and radiation have long-term affects that may present themselves some 20 to 30 or even 40 years later. For an adult, this isn't so much of an issue but for a 4-year-old who may be looking at a new kind of cancer in his/her early 20s might wonder if cancer as a 4-year-old really required that radiation therapy that now produced his/her brain tumor.

Besides, cancers like Wilm's are childhood cancers that, if not given the money for research, will not be researched. The statistics and prognoses for children with some types of cancer are either better than or worse than an adult with the same type of cancer. Perhaps the treatment doesn't need to be as aggressive with a child, etc.

So please, let it be known that childhood cancer IS DIFFERENT if not only for the reasons just listed, but also because these are children, and they are my heroes and deserve to be STRONG like all the adults that overshadow these wonderful, spirited youth.

Tammy said...

I am a mom that shares your exact feelings. I know this was written a few years ago and I pray that you are all doing well at this point. We are on the other side of the fence; my 10 yr old son is not among the survivors, but he was strong. Thank you for your words and letting the world know how it "really" is. As National Childhood Cancer Awareness month approaches, I am already sick of the ads for Breast Cancer which is still over a month away. The children are once again be overshadowed by "Save the Ta Ta's". My mother lost her battle with breast cancer just 10 years prior to my son's death so I am very sympathetic about Breast Cancer, but who is going to stand up for our children?

emedoodle said...

I can share your sentiment here. But I get why childhood cancer isn't splashed everywhere - it's because for the most part organizations which raise money for childhood cancers tend to spend their money on research and not on advertising. It's discusting how little some organizations spend on research and actual help to patients.
http://curechildhoodcancer.ning.com/forum/topics/so-where-does-the-money-go

Anonymous said...

Now there is a very interesting spin on why we do not see the advertising for childhood cancer... Interesting I was just discussing this very thing with a friend the other day yet really did not grasp the implication of the direction of funds going to the right place and not to marketing.
I too am the mum of a very strong young man who is now in Heaven due to cancer. He however did not have cancer when he died but died due to organ failure which would never have happened if not for the initial diagnosed of cancer. His young organs just could not withstand the toxicity. Ty Spencer Sparks April 4, 1995 - September 17, 2012
dx - AML, Jan 19, 2009 relapse - June 4, 2010; bone marrow/stem cell transplant (unrelated donor) Sept 17, 2010... cancer free.