Avalon's Army of Angels
August 15, 2008
Curesearch and Stand Up To Cancer
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

The primary non-profit associated with the COG is CureSearch.  
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.  

In addition to CureSearch there are several wonderful childhood cancer charities of note:
Hope Street Kids
                                     Alex's Lemonade Stand Foundation for Childhood Cancer
                                     People Against Childhood Cancer
                                     Candlelighters Childhood Cancer Foundation

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
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

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

                     Annual financial Reports - click on 2007 when you get there

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:

Stand Up To Cancer

The nationally televised show is Sept. 5, 8pm et/pt, 7pm ct on ABC, CBS & NBC.  Who
knows?  You might not sneeze and miss Avalon.  

Darn shame she didn't even get a card out of it!!!  
Avalon and Nick.  Avalon was 22 months  old.  Nick had shaved in
solidarity.  This photo was taken by Sarah Smith of Kent Smith
Photography, Columbus, OH.