Our friends at Kids v Cancer are preparing a book for members of Congress thanking them for their efforts in passing the Creating Hope Act......

Dear Member of Congress,

For a couple years, my right shoulder really ached. It ached from throwing thousands of footballs to my 14 year old son, Alex John, AJ. Trying to lead him just right on deep post patterns, to keep up with his speed. And, after the last one every time, from catching the big lug as he ran and jumped into my arms, yelling "The Bills win the Super Bowl, the Bills win the Super Bowl!" Just us dreaming. It ached from trying to pitch as fast as I could so he wouldn't hit me, but he always did. It hurt enough so I only slept on my left side and if I rolled over on it, it would wake me in the night. But I didn't care, how could I stop doing those things? I loved it.

My new problem is that my shoulder slowly but surely stopped aching. Now what keeps me awake at night is my broken heart. You see, I have no one to throw those passes to, no one to brush back anymore. Because AJ left us on January 5, 2008, a victim of childhood cancer.

I could tell you about the greatest son ever, go on about how funny, smart, athletic, musical, animal loving and, as we came to know during those dark nights, how evolved he was.  I could tell you about how he fought cancer, so strong and graceful.  And it would break your heart.

Instead, I will tell you that after five years of learning more and more about childhood cancer, after five years of seeing so many other children fight, so many parents, and siblings devastated; I am just as heartbroken and even more outraged.

My outrage comes from the fact that we, as a nation, as parents, as guardians, are NOT doing enough to save our kids from their greatest threat from disease: childhood cancers.  Can you name another threat where our society doesn’t put our children first in line for safety?

I’m outraged by the huge lack of awareness that childhood cancer even exists!  I’m outraged at the lack of funding for research, family support, and long-term survivors.  Did you know that the childhood cancer community primarily funds life-saving research by shaving their heads and selling lemonade?   How outrageous is that? 

I’m outraged that the National Cancer Institute directs less than $200 million of its $5,200 million dollar budget to childhood cancers, which in turn kill more kids every year than cystic fibrosis, muscular dystrophy, asthma and AIDS combined!

I’m outraged when I see an 80% cure rate quoted—because we don’t hear about relapsed neuroblastoma patients, where the options are so limited, or DIPG, where there literally is no option.  I’m outraged that 2/3 of those five-year survivors face dramatic and devastating effects (secondary cancers, major organ damage) from the “cure” of cutting, burning and poisoning with drugs developed 25 years ago.  

I’m outraged that childhood cancer is considered rare, when “rare” is defined as 13,000 kids diagnosed every year. That’s nearly two classrooms of children every school day, with over ½ of one classroom ultimately dying from cancer.  It’s “rare” only if it’s not happening to your child. 

I’m outraged that the chances are 1 in 300 your child will be diagnosed with cancer before age 20; that the chances are 1 in 5 the cancer will kill him or her before 5-years and then, once you are “cured”, another 1 in 5 for the rest of their lives -- and we still don’t fund enough research to save all of them.

Thank you for helping to diminish my sense outrage. 

Thank you for passing “the Creating Hope Act,” Section 908 of the Food and Drug Administration Safety and Innovation Act, S 3187.

I would respectfully request that each time you see the words childhood cancer, please take the time to learn more and continue to support the cause. 

AJs Dad

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Comment by Brian Jones on February 22, 2013 at 4:00pm

This is a great letter to congress with a personal touch. We are preparing to start a letter writing campaign before this years budget is set. We need to flood the thoughts of  all senators and congress people to "end the threat of childhood cancer" 2013 must be the year we make our demands for our children. We must not fail.

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