Got an interesting phone call today. Its the "Why" behind posting the picture up there.
Lots of background info necessary here - bear with me, I'll try to make sense of it all.
First of all, you need to understand how pediatric cancer research is funded. Well, basically, its almost not. Pediatric cancer is so rare, the drug companies stand to make no profit from it, so its not worth their research dollars. They'll fund project after project for boobs and balls, because they stand to make out like bandits there. But kids? Nahh...there just aren't enough of them to interest the corporate accountants.
Our kids face similar issues with the federal government. With a finite amount of money, the feds allocate their bucks by how much of the population is afflicted with a certain disease. (Way, WAY oversimplifying here - but you get the general idea) If 1 in 3 women will get breast cancer - but only 1 in 350 children will get some form of cancer (of which there are hundreds), our kids just don't beep on the Feds' radar screen. Even ALL is ignored, and it accounts for approximately 1/3 of all pediatric cancer (2500 cases a year diagnosed). Can you imagine something rare like bone cancers? Added together, the different pediatric bone cancers only affect 0.6 out of every million children. Literally, a child's odds of getting bone cancer is less than 1 in a million. How much do you think the government cares about them?
The worst insult in the bunch, are the cancer charities of the world. Damn near all of them use the faces of our kids to pry your dollars out of your wallets, but most of them turn around and use those dollars for the exact same cancers that the feds and capitalists already fund. Why not? After all, the people running the charities are adults, and most likely, they've never been touched by pediatric cancer.
The American Cancer Society is one of the worst about this. In years past, over 3/4 of the "faces" of cancer at local "Relays for Life" have been children. However, less than 1% of the funds raised actually go to pediatric research. Puke. Do I mind funding boobs and balls? (breast and prostate cancers) Nope. I have a pair of one, and am married to someone with a pair of the other. I'm in, I get it. What I don't "get", "accept", or even remotely like - is that these people continue to trot out our children - then act as if they don't matter. The ACS says it allocates its funds like the federal government does, cancers of higher incidence are awarded more money. I'm a sentient being, I understand. Then, by all rights, they should use THE FACES of the people they fund research for. Leave our kids out of it!! Warrior moms and sisters and courageous dads and brothers should be displayed. Leave our kids and their sympathy factor, to the people who advocate directly for them. We desperately need every research dollar we can scrounge up.
*Please click the following link to read a personal case study of the crap festival that is the ACS : article about the American Cancer Society's Relay for Life Lest you think its all doom and gloom, I need to tell you about the beauty that is pediatric cancer research. Pediatric oncologists accomplished something astounding several decades ago...they joined together. For the very reasons I outlined above, (lack of numbers) research in pediatric cancer was difficult. The numbers for adult cancers are so large, that several research projects often take place within one institution. Even within the same hospital, different doctors can have a enough patients to make their projects statistically viable. Not so in the pediatric cancer world.
To solve this problem, hundreds of institutions, and thousands of doctors, nurses, and research scientists banded together to form the Children's Oncology Group (COG) COG is actually the result of two earlier groups joining forces, in a concerted effort to focus research dollars more clearly. By working together, scientists around the country (and even across the globe) can track trends and study effects more efficiently than any single institution could. If you would like to remind yourself of how the COG studies work, look back to the July 15, 2008 entry, I explained it in gory detail. Click Here for July 15, 2008
Why have I, once again, delved into the COG wonderland? Because, at its core, the COG exists to best utilize the paltry few research dollars that are thrown at childhood cancers. These men and women have eschewed personal gain, institutional competition, and ego-centric practices...all in the name of helping our children the best way they possibly can. They have learned to play nice, when all those around them are still throwing sand. They are admirable, and should stand as shining examples of how well cooperation can serve a cause.
The primary non-profit associated with the COG is CureSearch. www.curesearch.org CureSearch is a national non-profit organization that raises funds for pediatric cancer research, education, awareness, and lobbying efforts. CureSearch is by no means the only sound, respectable childhood cancer research organization or awareness group. Its just the main one associated with the Children's Oncology Group. In the interest of my opening rant, its worth noting that a charity rating index recently downgraded the American Cancer Society to a mere 2 stars, while upgrading CureSearch to 4 stars. There were lots of details about exact percents of dollars spent - but I've lost the dad-blasted notation to quote it. As soon as I find my source again, I'll cut and paste and be more detailed.
You will note the obvious absence of St. Judes Children's Hospital. While St. Judes has recently acquiesced and joined the COG, it has never learned the lesson of selflessness. The money-making-monster-machine that produces those holiday commercials and endless cards and campaigns...only serves St. Judes. You heard me right. The money people give to St. Judes, thinking they're helping all cancer kiddos, stays right at St. Judes, serving their research, their kids, and their corporate machine. They come in dead last in Miss Congeniality competitions. I am not suggesting that they haven't made scientific progress, they are responsible for some interesting discoveries. The sad thing, is what they could have accomplished - if they were willing to share the bounty with the hundreds of other hospitals that do cooperate. Please don't take my word on it, do some digging through charity -ranking websites and sites that show allocation of funds. You'll likely lose your lunch.
Anyway, here we are, finally coming round to the entire reason for this lengthy lecture. I had an interesting phone call today....
There is a new cancer initiative poised and ready to pounce on the collective psyche of America. By now, you may have gotten wind of it - its called Stand Up To Cancer (SU2C). SU2C is the brainchild of Hollywood, Bollywood, Dollywood, and any other in-bred cousins you can imagine. Celebrities far and wide, and the producers, directors, and all-around mob of humans who service the few and the annointed - dreamed up this bohemoth. The idea is, the "in the know" media moguls are sick and tired of people being sick and tired with cancer. They've decided that if they rally the country with one big push, we will all leap out of our recession-depressions and throw money at cancer research. First they put up the website, and now they're deep in the trenches of the PR blitz - warning....uh....introducing the public to what they are about to be bombarded with.
SU2C is, in effect, an inter-faith, non-denominational effort. I'm not talking religion, folks. I'm talking network. The 3 biggies are banding together, to present an all-out assault of the airwaves on September 5, 2008. This assault is designed to fuel the fires of our barely-smoldering hearts and raise us to dizzying heights of participation. We are supposed to be soooooo amazed that these people have banded together...that we suddenly dive head-first into cancer research fundraising and abandon all reason in the pursuit of the cure of the Big C. At this point, the entire thing has become a "See and Be Seen" Festival O' Egos that Jackie O'Nassis herself would have been proud to claim. The list of celebrities is impressive, its the sincerity of their devotion that I question.
You'd think I'd be dancing naked in Times Square over the thought of a cancer awareness telecast in September. After all, September is Childhood Cancer Awareness Month. You knew that, didn't you? Of course you didn't! NOBODY does!!! Its the sea urchin in the collective panties of cancer moms. NO ONE knows our kids have a month. Heckfire, the boob patrol starts their "pre-October" pink campaign before our month is even half over. And YES, I'm bitter about it. We neeeeed the time, the attention, and the money. The drug companies, federal government, and multitudes of charities already drown them with cash!! Can't they leave my kids to their own time?
Again, wouldn't you think I'd be twirlin' a whirl and shakin' my bacon over Stand Up To Cancer? Wouldn't you? Well, I'm NOT. SU2C was formed entirely in a vacuum, void of any interest or mention of childhood cancer. AAAAAAGGGHHHHHHH!!!!!!!
Yes, you read my screams of agony correctly. Stand Up to Cancer only intended to "stand up" for adults. Kids were most assuredly not on their agenda. Enter a group of dedicated, resourceful, and tired of being overlooked cancer parents. Enter....us.
I first heard about SU2C from my online ALL-Kids list support group. A mom in our group had taken her acting son to an audition in California. The little guy had been sent there by his agent, because he fit the wish list of producers. Little did the Hollyweirds know, their actor-boy also happened to be a cancer kid. As his mom learned of SU2C, she became excited and shared the website and planned Assaulta-vision with the list.
Its not hard to imagine that we weren't enthused. In fact, I'd say most of us were more ticked than tickled. First of all, the Attack-A-Thon was scheduled during OUR month. And worse....the website made absolutely ZERO mention of children. Crapomundo, if you'd have gone to the site, you would have been convinced that every adult alive was destined to fight the big C, after living carefree perfect childhoods. It never occurred to any of them, that our children fight for their lives, before they've even had the pleasure of living them. Can you say, Arrrggggggg?
In fact, I'm not thrilled to admit, I exchanged more than a few aggravated emails with this particular mother. Her heart is firmly in the right place, its her logic and faith in these people that I question. However, she did tell us about SU2C's existence - and her sharing has possibly led to something interesting.
The moms on ALL-Kids are militant. We write emails, letters, and make phone calls and videos. We are the mothers of children who endure years of chemo. We're "around the watercooler" long enough to witness more than our fair share of families who lose the fight, and we all have to live with the reality of "There but for the Grace of God go I." We are determined, and we run towards a fight, not away. Along with a few AMAZING groups of people who have recently formed foundations in honor of their lost angels...we began to storm the doors of SU2C. We demanded to be heard.
In all fairness, I fully admit that my efforts to enlighten SU2C paled in comparison to how hard I fought for the passage of the Conquer Childhood Cancer Act. I'm pretty sure I had a hall pass - this battle began the same time Avalon's brain-drain did. Sorry, the effects of childhood cancer temporarily de-railed my efforts to expose it.
A few weeks ago, the happy SU2C mom wrote to the List again. This time, she was pleased to tell us that we'd made a few little pediatric inroads into SU2C. They had invited someone from Candlelighters to be on their board. And supposedly, they were "in discussions" with CureSearch. As I wrote above, Candlelighters is a reputable, forthright, and good charity to support. However, in terms of pediatric cancer research, they're more of a lightweight. Candlelighters was started by cancer parents, as an education and support resource. Inviting them to sit on the SU2C board, was a bit of showboating. CureSearch is the big guns...without them, I still wasn't terribly excited. Besides, no matter how you look at it, SU2C stole our month. They could have put their Carnival Cruise in any other month, and been fair to adult cancers. Yet, in their ignorance of our children, they have completely upstaged us. Leaving us to gather the troops and look ahead to next year...when we might get someone like Oprah or Ellen to act as if our children are half as important as their dogs. We can dream...
In my ever-so-quiet-and-reserved-manner, I expressed my opinion that even if SU2C invited CureSearch to the table, the fact is, I won't so much as a wiggle a toe for joy...until I see the money. I have grievous fears that our adorable little baldies will be the stuff of tears, fears, and smears of ink on checks...only to find themselves, once again, at the back of the line when it comes to sharing the pot. Again, I want to be clear about this. I whole-heartedly support adult cancer research. I'm a middle-aged pudgy woman. Its a near certainty some part of me will eventually invite in the big C. I'm all for devising new battle strategies. I just don't want to watch children parade, and adults profit. If they only want to fund big people, fine. Get the heck out of Our Month - and don't pay kids to make your commercials.
As you can tell, these are pretty deeply rooted beliefs. And, I'm not exactly shy about sharing them. This would be the interesting part of the phone call I've been alluding to. As I was napping this afternoon (trying to catch up on sleep lost to booger blight), Aurora woke me up with an odd phone call. Truly, I was deeeeeep in the ZZZ zone - so I honestly can't tell you the name or title of the lovely man I chatted with. (He offered those tidbits a little too early in our conversation.) Anyway, said sleep-bandit was a muckity muck with CureSearch. You know, the powerhouse I just referred to? The purpose of the call, was to tell me that they were, again, going to use the above image for a special purpose.
The photo of Nick and Avalon was taken by a local photographer in Columbus, Ohio. It was one of several pictures taken to be used by a local pediatric cancer research charity, Circle of Friends. COF raises several hundred thousand dollars a year, that is donated directly to our local children's hospital cancer research center. We were, and are, honored to be a part of this charity, and are proud and humbled by what they've done for our kids. Allowing Avalon to be photographed was the best way we could contribute.
The day of the photo session, we had no idea this picture would ever exist. The photographer, Sarah Kent, asked all of the family to wear simple black shirts and jeans, in case she wanted to do any group shots. When she saw Nick's solidarity-shaved head, she couldn't resist trying some daddy/daughter shots. Her keen eye, and a Hand of God, gave the world this image. We've long since recognized that its a far greater image than that of Nick and Avalon. This picture represents all pediatric cancer families, desperately holding onto their children. In black and white, the image is as haunting as it is beautiful. I don't have the black and white file, so I'll link to it in a little bit.
I've used this image as a gift for our doctors and nurse practitioner. As a black and white print, I matted and framed it, with the words, "Thank You for helping us hold onto our Children." I've also used it with a similar sentiment for Thank you cards to staff. The hospital hasn't used this one, but they fell in love with the photo that graces the Home Page of this website. Its been seen all over Central Ohio.
Last September, as my militant ALL-Kids List friends and I began to gear up to fight for the Conquer Childhood Cancer Act, two of the moms had a brilliant idea. They asked people on list if they would share photos of their children - in any and all phases of treatment. In a two day marathon, these mothers made the most haunting pediatric cancer video I've ever seen. Its beautiful, its powerful, its the truth. No Hollywood producer could have come close. These women lived it, and the video shows that.
The video was shared with CureSearch, and they adopted it for their site. The above image was included in the video, along with a quote of mine from my other website, www.crazycancermom.com. When this picture comes up, the caption is, "If it were your child, what would you do?" My quote is late in the video, "One child lost is too many, one child saved, Can change the world."
CureSearch loved the Nick/Avalon image. They contacted the video divas, who helped them reach out to us. After securing permission from the photographer, we agreed to allow CureSearch to run with their ideas for a campaign. Sadly, we experienced a severe breakdown in communication with CureSearch. Our only request whenever Avalon's image is used, is to please contact us and offer the courtesy of "asking" (even though they have legal permission) before you use it. Also, please always save several copies of it for us, so we can archive them for her and ourselves. The breakdown came when an online friend excitedly shared how cute the image was on the CureSearch annual report! Hmmmm...we'd never been told. The real zinger was that the image was also used on holiday cards CureSearch sent to Congress, another item we had no idea about. The cards worked...the congressmen couldn't ignore the image. So our mission was accomplished beautifully, it just wasn't done with terribly much tact.
CureSearch stepped up to the plate, though. They fully apologized for their social faux pax, and sent us a box filled with copies of the items. In the end, we couldn't help but be excited...the photo turned out beautifully! If you'd like to see it, you can find the image in a few places on the CureSearch website: CureSearch brochure
This picture, was the point of the out-of-the-blue sleep depriving phone call. This, is why you've been forced to read all of my political ramblings. I've finally made it. I've finally come full circle...
It seems that Stand Up 2 Cancer has, indeed, been in discussions with CureSearch. The lovely man I spoke with rather shared my concerns, but was hopefully optimistic. After all, he's still sitting in the sandbox with them, he doesn't want to be sent packing, rather than invited in for cookies. So, our conversation will largely have to remain ours, and our hopes will have to remain suspended...dreaming of what may be.
As part of SU2C's attempt to Johnny-come-lately it and finally realize that kids do get cancer, they asked CureSearch if it would like to send images to be used in the national broadcast. CureSearch sent hundreds...and was calling to tell me that Avalon and Nick were one of only three that were chosen. They have no idea when, how, what, or where SU2C will use it, but its slated to be part of the national broadcast.
So, here we'll sit on September 5th, forced to stare at a telethon that began its quest in the complete absence of concern for our kids. We have no idea if we'll watch for 3 hours and they'll appear for a nano-second, or if they'll use it every time they lead into a commercial. We are COMPLETELY in the dark. Slightly raises the frustration bar, but nothing we can't clear. Its getting easier by the day, as our Cancer Troops have more and more success, and new pediatric focuses are being announced for the broadcast. I remain cautiously optimistic, I haven't quite hit the "hopefully" level yet.
If you are interested in checking out Stand Up to Cancer, their website is: