You are currently browsing the monthly archive for September 2013.

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.

Advertisements

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.

363_37523546678_5200_n

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.

 

September 2013
M T W T F S S
« Aug   Oct »
 1
2345678
9101112131415
16171819202122
23242526272829
30  

Archives

September 2013
M T W T F S S
« Aug   Oct »
 1
2345678
9101112131415
16171819202122
23242526272829
30