For the past two years, my right shoulder really ached. I called it my torn rotator cuff. 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 (he’d only let it end after he made a spectacular catch) 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 honestly 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 over the past years, my shoulder has 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’ve no idea if you’ve even been on a pediatric cancer floor. Ever walked the halls and seen the smiles or tears on the faces of the little kids as they play on their big wheels. The tiny little masks they wear to ward off infections. How the moms and dads race behind with the ever present IV pole. How the teens hang together and still try to be cool; even though they’re bald and ready to throw up at any time. How the teens have added words like methotrexate and acronyms like ANC to their texting; instead of sweet and LOL. How the babies cry; unable to say what hurts. Or, if you've seen a mom, dad or sibling alone in the break room at 3 am; with their head in their hands, feeling alone, helpless, scared and mad.
I've seen it all and more.
In December 2007 AJ had to ask me, "Dad, what's hospice?"
I’ve seen enough. For the past 8 years, I've advocated, screamed for, cried for and fought for increased awareness of childhood cancers. Here's why:
1) Overall, childhood cancers are the #1 disease killer of US kids, killing more kids every year than every other disease that affects kids combined, and worldwide over 100,000 die annually.
2) Childhood cancers are considered rare, but “Curing childhood cancers would be the equivalent of curing breast cancer in terms of life-years saved”.
3) Despite this huge disease burden, childhood cancer research is grossly underfunded (bit.ly/NCIMoreThan4).
4) 1 in 285 kids will be diagnosed with cancer before age 20, about 16,000/year, and the incidence of childhood cancer has increased about 29% over the last 20 years.
5) About 80% of kids survive 5 years; but 1 in 5 of those 5 yr. survivors will die prematurely due to the original cancer, a secondary cancer or the effects of treatments.
6) When you consider this late mortality (death after 5 years), the long-term survival rate declines to around 66%.
7) Incredibly, 98% of survivors suffer from a chronic health condition by age 45, including pulmonary, hearing, cardiac and other problems related to cancer or the treatments.
8) So, kids need new treatments: “We’ve reached our limitation for how to shuffle the standard chemo agents. We’ve used these drugs as intensely as possible and in as many different combinations as possible, and yet a proportion of kids will still die.”
9) But, kids don’t vote: 96% of Federal funding for research is for adult cancers, leaving only 4% for childhood cancer research.
10) Funding from large cancer organizations doesn’t help too much (e.g., <1% of American Cancer Society total donations is directed toward childhood cancer research)
11) Pharmaceutical companies fund 60% of all adult cancer research, but historically do virtually no childhood cancer research because it’s not profitable.
12) In the richest nation, with the highest standard of living, the greatest world power, the country that went to the moon -- we have to rely on lemonade stands and cookie sales and