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    Posted August 29, 2014 by
    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 it’s still the month of September but mass marketing campaigns are a lot of work and I tried not to think of how little of that “pink 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...people fighting their diseases need help and many of these organizations are taking donations and profiting off cancer…the pediatric cancer community does not need more people standing around with their hands out, we have enough of those already.


    “Awareness” is not always about funding research or needed services…sometimes 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. And that keeps us cancer parents scratching our heads and going back to the drawing board…why is the color gold not just as precious as the color pink when it comes to cancer….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. How wonderful it would be to have Bill Gates and Mark Zuckerburg talking about kids with 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… leukemia stole his little sister’s life all those years ago and recently it robbed me and my family of Matthew. Did the Bush family forget about liitle Robin…how hard she fought…how maybe she was supposed to be the next president but pediatric cancer squashed any dream and hopes at 4 years old...When Robin Bush died from  pediatric cancer all those years ago there was a funding and research issue...Today pediatric cancer is still underfunded and lacks research,  yet Robin's own father and brother who both served terms as a United States President chose to look away from that issue by not taking action to help children with cancer...They chose to keep quiet about their loss and since then thousands’ of more children have died from cancer.


    I often say it’s not you it’s me and I am sorry I am damaged cancer goods and all other “causes” just seem to fall short…I had an uncle die from ALS…It was horrible, sad and tragic…but ALS is in fact rare and we know more about why one may get ALS….In most cases we have no idea why kids get cancer and doctors have no clue as to why my son was born with cancer.


    I recently stated a fact that you wont find in any books but 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, data, and statistics.


    First off the data collected to support cause of death in children from cancer lags behind 4 years…My son who died in 2013 is still no accounted for....and though he left my world over two years ago his death is still waiting to be validated...So yes in 2010 pediatric cancer was still number 2….but when you look a little deeper and evaluate how pediatric cancer's biggest competition for “numero uno” is Accidents…An "Accident" can contain any type of accident like choking, car accidents, slip in the bathroom, and suicide…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 and  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 same 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 we have 1 in 285 children are diagnosed with cancer…Children with cancer now  represent  a full 1% of all diagnosed cancer cases and the rate pediatric cancer cases is now at a 6% increase. Please keep in mind the data we are talking about presently is from 2010.


    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. Are we rounding up here? Because each number represents a child’s life and we need each of our warriors lost to pediatric cancer accounted for… maybe a few more pennies to help with collection data is something the National Cancer Institute should consider since they are so far behind keeping track of dying children.


    I will be honest, the actual number to me is now irrelevant for it has been 1 too many children and last year the only  "decrease" in regards to pediatric cancer was the amount of money being allocated to help our children fight cancer…The National Cancer Institute says blame 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 of those pennies.


    I still find myself at a loss for words when people ask me how to get attention for our cancer kids…how can we get more research money and all I can say is keep doing what you’re doing and don’t stop talking about pediatric cancer...it is all working and much progress has been made because you aren't going away. President Obama can wear his pink bracelet to show he is “aware” and the empire state building can continue to not go gold...The lovers of children and all things gold are not backing down either…Our movement is growing at a rapid rate. The more you ignore us the louder we get and when the ALS ice bucket fad runs dry we will still be here…fighting for children like Will Walker.


    Will Walker, a beautiful American boy whose future was cut short by pediatric cancer. This young man will be one of the seven who will lose their battle 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 are wrong Will Walker and may your mother and family be rest assured your legacy will never die.


    Now I ask you to join any social media campaign that concerns pediatric cancer... 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 the tax paid federal budget for cancer research.

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