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And so, another Childhood Cancer Awareness Month comes to a close. And I wonder if the general public is really any more aware. Did anyone learn anything new this month, anything that will change their actions or their giving patterns or their voting patterns? Did someone in a position of power see an image or read a story and decide to make a big change? Sometimes you wonder what it’s all for. We “like” some sad photos of sad bald children on Facebook and feel like activists. We share someone’s status update or read a heartbreaking blog written by a heartbroken parent and feel like we’ve made a difference.

We’re not really making a difference. Not enough anyway.

We walked on Saturday in the CureSearch Walk for Childhood Cancer. This was our fourth or fifth time walking and the crowd was smaller than ever. It was a gorgeous day, the route takes you through a gorgeous part of Cleveland (a very short, gorgeous part so that can’t be the excuse). There are free bagels and coffee and even post-walk lunch provided by Chik-Fil-A (trying to earn some brownie points with a non-controversial cause, perhaps?). By no one shows up. Like, really, almost no one. There were maybe 150 people registered. Couldn’t have been more than 200 there. 250 with kids and babies?

It’s weird. And sad. I know everyone has their causes and I certainly don’t go to every walk or race or stair-climb I’m invited to. And I’m not at all guilt-tripping my people for not going, I promise — not one tiny bit. I would have asked harder if I wanted you all there. St. Baldrick’s is our thing and that’s more than enough to satisfy us personally. But in terms of the bigger picture, the big, broad, general public picture and its “awareness” of childhood cancer? Well, it seems pretty non-existent.

And if the public is truly aware — aware of the truth that pediatric cancer kills more children than any other disease (and indeed more than the top five other disease killers combined), that one in every five children diagnosed won’t survive, that of those who do survive, more than 60% will have long-term, life-threatening or life-altering side effects, that less than 4% of national cancer funding goes to pediatric diseases, — if we really know all that and we still don’t show up. Well, . . . like I said, that’s sad.

The month of September always gets me. Not only is it Childhood Cancer Awareness Month, with the barrage of images and stories, Facebook updates and fundraising pleas. I wish I’d been more engaged this month, I certainly meant to post regular updates, but that never seems to happen anymore. (Some other parents did it for me though and they did it well and with anger and passion and jaw-dropping statistics: see here and here and here.)

Then there’s the fact that September 2007 was probably the worst and darkest month for us in all of our years of treatment, the calendar dates file past us with bold reminders of things we’d really rather forget. This was date when we realized his tumor was growing, big and fast and with terrifying mystery; this was the date they removed his right kidney, along with that hard to fathom six-and-a-half pound tumor; these were the six days when we waited and waited and waited, pacing the hospital room, searching for signs, for the results that would define our futures; these were the ten days we waited and waited and waited for Austin to be allowed to eat, hiding ice chips from his weakening one-year-old grasp. It’s a virtual landmine of anniversaries.

And then there is today: the sixth anniversary of my second baby boy’s first birthday.

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Because today Austin is seven. Against all odds. Seven.

photo(301)And, speaking of against all odds, he’s holding a 75-pound albino python in my dining room, but more on that later.

 

We will again be walking in the Northeast Ohio CureSearch Walk for Children’s Cancer. This year’s event is on Saturday, September 28, capping off what will hopefully be a productive and effective Childhood Cancer Awareness Month (don’t get me started on the pink versus gold ribbon debate). I’ve set up a Team Austin and welcome anyone to join us. I also must mention that, upon my suggestion, the friends and family of Becca Meyer have established Team Becca, currently in first place for both walkers and dollars raised. If you’d like to join or donate on Becca’s behalf, that is totally fine with us. The reasons we walk are all the same anyway. Those reasons, in a repost from last fall, are here:

From a September 2012 article about the Walk, as published in The Heights Observer:

Krissy and Mark Gallagher, also of Cleveland Heights, are participating in the Walk for their five-year-old son Austin, a two-time survivor of kidney cancer. “Austin has lost his entire right kidney and half of his left to cancer,” explained Krissy. “He’s had 10 surgeries, 13 months of chemotherapy, 12 rounds of radiation, and has spent hundreds of nights in the hospital. Despite all that, he’s one of the lucky ones. Because he’s alive. Until we can say that for all children diagnosed with cancer, our work is not done.”

And that’s just it: Our work is not done.

Childhood cancer remains pitifully underfunded, with only 4% of dollars raised by the American Cancer Society going to research for pediatric and young adult cancers. That’s why our work isn’t done.

No new chemotherapy drugs have been developed specifically for childhood cancers in more than twenty years. That’s why our work isn’t done.

Austin’s cancer story, featured here in the first newsletter for the parent support group In It Together, is sadly not unique. But instead starts anew for nearly 40 families every single day. That’s why our work isn’t done.

Earlier in the month, following the fabulous Stand Up To Cancer telethon, there were many Facebook statuses that read, “I stand up for. . .”  I commented on one, listing the names of eight children: Austin, Ariana, Ashley, Dylan, Olivia, Abby, Seamus and Emily. Afterwards, I sat back and read over my list and realized that only two of them, including my own Austin, were still alive. Two out of eight. That’s why our work isn’t done.

Please join us for the CureSearch Walk on the 28th, if you can. Stand with us. Walk with us. With Austin. With Becca. So we don’t have to add another name to this list next year. Because our work isn’t done.

 

I never had a chance to post about the CureSearch Walk, as I was busy packing for my fantastic getaway.  Thank you to those who joined us or donated on our behalf.  We had a nice group of about 25 friends and neighbors who walked alongside us on a beautiful sunny morning.  The kids, of course, thought it was all about making baboushkas out of their new bandanas and devouring free bagels. And when they called up those who had lost a loved one for the balloon release, Austin eagerly insisted on going up.  “Oh-kaaaaayy,” I hesitated, trying to quickly determine which child we’d release a balloon for.  I settled on our beloved Ariana (of course) and Dylan, another young friend whose story is too pathetically heartbreaking to relate on this dreary gray Wednesday.

The overall event was nice, raising more than $60,000 for research.  My one friend who attended for the first time was amazed at how small it was, compared to the breast cancer events she’s used to.  Which brings me to my own little pity fest, egged on by the ever-increasing pink in our world. I don’t mean to begrudge the breast cancer movement its marketing success.  I am indeed amazed and impressed by the truly remarkable feat it has achieved in in just three decades, making this once-silent disease the darling of corporations and advertising campaigns.  And of course I believe we need to fund breast cancer research and of course I believe that awareness raising is a part of that. And I hate to act like my disease is the only one that matters, because if we all thought that, we’d never make any progress.

But the fact that Childhood Cancer Awareness Month falls right before Breast Cancer Awareness Month does make for a stark comparison, as that wave of pink inevitably bleeds over the calendar’s edges. I remember last fall, over Labor Day weekend, a local design shop began setting up its two-story pink ribbon display facing a busy intersection.  Now, I am perfectly fine with them supporting breast cancer awareness and research, but does anyone even know the ribbon color for childhood cancer? It was Labor Day, all of three days into September.  Keep your pink confined to those 31 days, dammit!

Okay, that was harsh and selfish, and probably isn’t the answer at all.  Maybe we don’t need to designate any set period of days or weeks to one disease versus another, just like we don’t need to confine black history to the month of February.  Maybe we simply need to look at numbers and impact and fairly and appropriately fund research across the board.  Easier said than done, I know. And it’s no doubt true that more adults get and die from cancer than young people do. But it’s frustrating to know that pediatric cancer kills more children each year than AIDS, diabetes, cystic fibrosis, congenital heart defects, asthma and muscular dystrophy combined. But receives 4% of all national funding for cancer research and treatment. That alone should shock us into action. Not to mention the fact that of those children who do survive, one quarter suffer from life-threatening or life-altering complications from their treatment.  And a major study out of Britain recently concluded that for survivors of childhood cancers “their risk of dying earlier than their peers who had never had cancer remained significantly elevated even after 45 years.”

So, I’m certainly not proposing that we stop or slow the progress made by movements like breast cancer awareness (although some people do raise very interesting questions about the tactics and especially about the promotion of products with pink ribbons that likely contain carcinogens, see here and here). But I am proposing that we focus on what’s actually important — in the case of breast cancer, what’s actually important is not saving the ta-tas but saving lives. And the same goes for our nation’s children. We must save them, every one.

There are too many balloons in this scene:

Childhood Cancer Awareness Month is quickly coming to a close and I feel as though I haven’t done my awareness-raising duties. So, here’s my please-come-walk-with-us-this-Saturday push, as published in The Heights Observer:

Krissy and Mark Gallagher, also of Cleveland Heights, are participating in the Walk for their five-year-old son Austin, a two-time survivor of kidney cancer. “Austin has lost his entire right kidney and half of his left to cancer,” explained Krissy. “He’s had 10 surgeries, 13 months of chemotherapy, 12 rounds of radiation, and has spent hundreds of nights in the hospital. Despite all that, he’s one of the lucky ones. Because he’s alive. Until we can say that for all children diagnosed with cancer, our work is not done.”

And that’s just it: Our work is not done.

Childhood cancer remains pitifully underfunded, with only 4% of dollars raised by the American Cancer Society going to research for pediatric and young adult cancers. That’s why our work isn’t done.

No new chemotherapy drugs have been developed specifically for childhood cancers in more than twenty years. That’s why our work isn’t done.

Austin’s cancer story, featured here in the first newsletter for the parent support group In It Together, is sadly not unique. But instead starts anew for nearly 40 families every single day. That’s why our work isn’t done.

Earlier in the month, following the fabulous Stand Up To Cancer telethon, there were many Facebook statuses that read, “I stand up for. . .”  I commented on one, listing the names of eight children: Austin, Ariana, Ashley, Dylan, Olivia, Abby, Seamus and Emily. Afterwards, I sat back and read over my list and realized that only two of them, including my own Austin, were still alive. Two out of eight. That’s why our work isn’t done.

Please join us for the CureSearch Walk on Saturday, if you can. Stand with us. Walk with us. Because our work isn’t done.

Ah, fall, my favorite time of year.  It still feels like summer, of course (and still is summer, of course), but I do so love September. Fires in the backyard on cool weekend evenings, high school football games, and Childhood Cancer Awareness Month.

Yeah, it may not get the attention that October does, with pink ribbons exploding out of storefronts and tiny percentages of your lipstick purchase going to breast cancer research, but it is just as necessary and just as deserving of public notice.

I’m not going to drown you in all the stats (at least not today), but I will tell you what my family will be doing this month.

This afternoon, as soon as I pick up the boys from school (and show off my new haircut — pics to follow), we’ll drive out to Avon to give a talk at a golf event, raising funds for Rainbow Babies & Children’s. Tomorrow evening, we’ll tune in to the live televised Stand Up To Cancer fundraiser, an every-other-year favorite for us. I recently received an email that said that a photo I submitted of Austin might (key word, there: might) be used during the show. So tune in to ANY of the major networks on Friday and keep your eyes peeled.

I am also currently trying to get the Cleveland Heights University Heights schools to adopt St. Baldrick’s as their district-wide charity. I have pretty strong feelings about teaching kids the value of actual giving — as opposed to just bribing them with prizes and incentives, like the current Pasta for Pennies fundraiser does. But I’ll save that tirade for another day.

And on Saturday, September 29, our family will be walking — hopefully alongside many of YOU — in Northeast Ohio’s CureSearch Walk. Team Austin is still preeeeeeeeetty small, but I know a few people who could change that.

And if you ever wonder why this is all necessary, take a look at this image, posted recently on St Baldrick’s Facebook page, under the heading Why fight cancer?

September is Childhood Cancer Awareness Month. Which unfortunately does not result in the blanket of pink ribbons you’ll see next month for Breast Cancer Awareness Month. Nothing against breast cancer awareness, of course, but how many of you even knew that gold was the color for childhood cancers?  Not many, I bet, because I didn’t know it myself until quite recently.

But if you’re already a member of this small world of pediatric cancer families, you know that there are a lot of events taking place in an effort to raise awareness and further research. The President issued a lovely proclamation last week which not only recognized those children (and families) currently in the fight but also the lifelong health consequences of treatment for those who’ve survived.

And I’m excited to announce that our sweet Austin was featured today on the Facebook page of The St. Baldrick’s Foundation as part of their month-long campaign to put a face to this disease.  I’m not sure if you can see it if you’re not on Facebook (I know you’re out there, you non-Facebookers) but here’s the link.  It’ll only be up for a few days so please “Like” St. Baldrick’s page (everyone should like St. Baldrick’s, Facebook or not) and check it out.

And maybe someday, we’ll all associate gold ribbons with childhood cancer. Or maybe someday, we’ll actually cure this dang thing and we won’t have to have Childhood Cancer Awareness Month at all (except in history class!). Wouldn’t that be nice?

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