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    Posted August 29, 2014 by
    BabyMatthew
    Location
    Salinas, California
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    For Will Walker

     

    I love all the attention the ice bucket challenge is bringing to ALS…it has turned out to be quite successful, way more than most social media campaigns I have seen…lots of money and awareness was actually raised.

     

    Yesterday when I was shopping for some gold paraphernalia, I walked by a full aisle of pink in preparations for October…I tried not to think of how little money actually goes to those suffering from breast cancer, but my mind went there anyways and I got annoyed with how commercialized “Awareness” has become. Everyone knows the NFL pockets much of the money made from all the pink merchandise they sell.

     

    It’s not about cancer it’s about business, so who can blame every other store, person, nook and cranny to not want a piece of all that pink action.

     

    It has us cancer parents scratching our heads…why is gold not just as precious as pink….how is one underfunded disease like ALS able to stimulate such an amazing campaign that even Oprah is pouring buckets of ice on her head.

     

    What the pediatric world wouldn’t do to get Oprah to just to look our way.

     

    Or have Bill Gates and Mark Zuckerburg talking about kids and cancer or the severe need for funding. I will admit when I heard that former President George Bush Jr. also participated in the ice bucket challenge I got a little irked…the same type of cancer that stole his little sister’s life all those years ago recently took my son’s life. Did they all forget about her…how hard she fought…how much better she could have made our world?

     

    I find myself wanting to say it’s not you it’s me…I had an uncle die from ALS…It was horrible, sad and tragic…but ALS is in fact rare…we also know more about why one may get ALS….In most cases we do not know why kids get cancer…I was told by doctors when Matthew was diagnosed that they had no idea why my son was born with cancer.

     

    The pediatric cancer community has been racking our brains to come up with lots of creative ideas in hopes we can be as successful as the ice bucket challenge…Whipping Cancer and throw a pie in our face…shave more heads…cookie and bake sales…eat a lemon…another kind soul thought surely a golden egg over the head would work.

     

    I am not sure what the magic ticket is…I do know that despite it all the only thing that is increasing is the rate of cancer in our children.

     

    I recently said, and please everyone quote me on this… “Last year pediatric cancer became the number one killer of our children surpassing automobiles and firearms”…People had to know where I was getting my facts from when clearly all data from most reliable sources still indicate that pediatric cancer is in the number 2 spot….Yes let’s talk about all these studies and facts.

     

    First off the data collected to support cause of death in children from cancer lags behind 4 years…So yes in 2010 pediatric cancer was still number 2….but let’s look a little deeper and evaluate how that figure is derived....Pediatric cancer biggest competition for “numero uno” is Accidents…Accidents contain any type of accident like choking or car accidents, firearms, and suicides…I find it interesting that though we do have definite counts for the amount of suicides versus an accident the figures are combined and then categorize into one number when compared to the amount of American children who die from cancer.

     

    In my humble opinion I am not sure how a 5 year old who chokes on a piece of candy is considered the same type of accident as a 18 year old who commits suicide. I think as long as we are able to redefine the lines as to what is an “accident” then we will never have to admit that cancer kills our kids faster than we can count.

     

    Here is what the data could not hide...the American Cancer Society puts out a report called Cancer Facts and Figures every year. In the report from 2012 they claim that 1 in 300 children in the United States will be diagnosed with cancer before the age of 20. In that report pediatric cancer represented less than 1% of all cancer diagnosis in the United States and was increasing at a rate of 5%. This is all from data collected in 2008.

     

    Now jump ahead to 2014 (please keep in mind the data we are talking about presently is from 2010); we have 1 in 285 children are diagnosed with cancer…Children with cancer represent a full 1% of all diagnosed cancer cases and the rate of children being diagnosed with cancer is now at a 6% increase.

     

    Oddly enough in the report from 2014 they estimate the amount of deaths from cancer to be 1,350 while the National Cancer Institute has the number closer to 2,000. Maybe a few more pennies to help with collection data would be helpful too.

     

    The actual number is now irrelevant for it has been 1 too many children and last year what did decrease was the amount of money being allocated to pediatric research…The National Cancer Institute says blame the government sequestering but pennies of a little or pennies of a lot…is still just pennies. The NCI also likes to report that they have increased the budget for pediatric cancer research and will show a graph chart that shows just that…but we are still talking about pennies of an allocated budget and no matter which way you paint it our children with cancer need more pennies.

     

    I recently was introduced to a gentleman who does a lot of advocating for ALS…He said from his perspective the pediatric cancer world is not united…our goals seem unclear.

     

    I hated hearing it but in a way he’s right and it’s not the first time it has been said….I still find myself at a loss for words when people ask me how to get attention for our kids…how to get more research money and all I can say is keep doing what you’re doing…it is working, just slowly.

     

    I was inspired by a story I heard recently…a prominent figure who works with horses and fell in love with Matthew was attending a board meeting. They were preparing for their next fundraiser and this year it would be pink again. This particular now pediatric cancer advocate felt compelled to stand up and ask why not gold? “Gold” they asked incredulously, why would we want to go gold??...For kids with cancer she stated….but kids with cancer have plenty of money, they replied…suddenly she was flooded with facts she had learned from our story…she said my words flowed from her mouth…she was obviously persuasive and not only do they want to hear more but they are considering doing a year of gold.

     

    So the Miley Cyrus’s of the world can continue to take a stand for homeless youth…President Obama can wear his pink bracelet to show he is “aware” and the empire state building can continue to not go gold.

     

    We aren’t backing down either…Our movement however unorganized is growing at a rapid rate. The more you ignore us the louder we get and when this fad runs dry we will still be here…fighting for children like Will Walker.

     

    Will Walker, one of the seven who will lose their battle to cancer today. My heart breaks that our government and every major cancer organizations felt Will’s life had a price…they priced it at pennies.

     

    They were wrong Will Walker and may your mother and family be rest assured your legacy will never die.

     

    Now I ask you to join our social media campaign Stepping Up. Thousands of us will light our own house gold and hope to get our governments attention to provide equal funding for our kids with cancer.

     

    Participants are encouraged to take a photo of their gold-lit porch or window and themselves holding a sign with the words “Obama kids get cancer too #StepUp2015” post it on all known social media sites using the hashtags "#GoGold, #BarackObama and #StepUp2015. Get creative dress in gold…bust out your Christmas lights but don’t forget

     

    We have a purpose.

     

    The purpose of the social media take-over is to grab the attention of President Obama and other government officials, demanding they #StepUp for children with cancer by granting immediate equal access to next years allocated 2015 budget for cancer research distributed out by the National Cancer Institute.

     

     

    https://www.facebook.com/events/721054767949630/?ref=2&ref_dashboard_filter=hosting

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