Rare?
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 month or so, 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.
I want a cure for the elephant in the room: Childhood Cancer.
I will never forget the days/months in the hospital. The feelings of powerlessness, out-of-controlness. Not that I didn’t advocate, research, support, fight for, scream. But inside, sometimes it seemed my primary function every day was to not only do the stuff to support AJ; but, at the time, to me, importantly, NOT step on the medium green colored tiles on my trips back and forth to the break room for ice, snacks, whatever. THAT to me was the only thing that I could truly control about all the things going on. And it was my goal to NEVER EVER step on one, and then everything would be OK. Sounds ridiculous doesn’t it? But I bet the nurses knew what I was doing after awhile; had seen someone like me before, weaving back and forth walking down the hall, looking down balancing plates and spilling 2 cups of coffee. When you are fighting this war as a parent, it is hard to do much more that truly affects the reality, the journey, or the outcome.
But you learn.
You learn there is a huge lack of awareness that childhood cancer even exists. That is results in an overall lack of funding for a myriad of issues associated with childhood cancer. You learn that the paradigm for childhood cancer is that it is “rare”.
You learn that our kids have about a 1 in 300 chance of being diagnosed with cancer before age 20. That cancer is the #1 killer disease of our kids before age 20; killing more kids every year than cystic fibrosis, muscular dystrophy, asthma and AIDS combined. That the 75% survival rate has not improved significantly in nearly two decades, and that you can count the number of newly approved treatments on one hand. That each day 40,000 children undergo treatment as they struggle to beat this lying, cheating disease. That pediatric cancers are different than adults cancers and require specialized treatments. That more focus is needed on childhood cancer survivors as they transition from pediatric to young adult care and are faced with a 60% chance of developing secondary cancers, major organ damage, developmental problems and/or infertility from the “cure”.
Now, I’ve lost my Mom and Dad to cancer. They both led good long lives. Still, very sad. Yet it cannot compare to the pain of losing AJ. It’s overwhelmed as a spark is by a nuclear explosion. So, when I see the amount of research money for adult cancers, I ask myself: If I was the captain of this sinking ship known as cancer, with men, women and children on board, what would my orders be? Say what you will, but my answer is this: We get the women and children to safety. And further, as any of the 2,500 to 3,000 grieving Mom’s every year would tell you: Take my seat! Save my CHILD!
But what’s the reality? Well, Federal and private funding for pediatric/young adult cancer research and survivorship is woefully inadequate. Breast and prostate cancer (remember the passengers?) receive orders of magnitude more than funding than childhood cancer when calculated per person years life lost. In 2007 the NCI budget was $4.8 billion, with $0.17 billion directed to childhood cancers. And, explain this one to YOUR child, drug companies don’t find research into such a “rare” disease profitable.
In this case, “rare” is defined as 10 to 15,000 kids diagnosed every year. That’s two classrooms of children every school day, with one-half of one classroom ultimately dying from cancer. No warning signs, no unhealthy lifestyles.
It’s “rare” only if it’s not happening to your child.
But it’s tough for parents in the fight to do much advocacy work. Those with children in treatment advocate every day for the health of their child. Those who’ve lost a child may be overwhelmed with grief, and frankly have a hard time just making it through the day. Those with survivors may simply want to escape from the childhood cancer world. All understandable. And those darn kids? Well they just can’t vote, write checks or pick up the phone to call Congress.
Yet apparently our advocacy is needed: “The solution to securing investment includes enlisting friends and ...”. Just asking - did ‘they’ throw the responsibility for your cancer research funding back at you and your friends and family?
So, we try. In August 2008 with my incredible co-founder Lori Keith, a childhood cancer survivor herself, we created People Against Childhood Cancer (PAC2). We researched reports; like those by SU2C’s scientific partner – the American Association for Cancer Research. We spoke to childhood cancer organizations like CureSearch, St. Baldricks, Alex’s Lemonade Stand Foundation, Rally Foundation, and Hope Street Kids, along with doctors, kids and parents.
We knew these organizations and people would be louder and stronger if they spoke as “One Voice United Against Childhood Cancer”. It became our motto. And we created PAC2; a free, grass-roots, on-line social network for the childhood cancer community, to share news, debate, support and knowledge. We focus on raising awareness and uniting with the 80 childhood cancer organizations we proudly count as members.
In January 2009 PAC2 mobilized to ask for increased funding for childhood cancer from President Obama through his Transition Team’s process to rank issues important to the American People. With over 125,000 questions submitted and 1.4 million votes cast, our question finished #5 in Health Care concerns, and was presented to President Obama in the Citizen’s Briefing Book. (no, we haven’t heard back…yet)
So, the volume is increasing and, after one unbelievable year, it’s lead us here. To unite with SU2C to raise awareness of childhood cancer and to fight for a cure.
September is National Childhood Cancer Awareness Month and September 12th is National Childhood Cancer Awareness Day. Throughout this month, SU2C will be hosting stories of amazing children and people all fighting childhood cancer. Let these stories inspire YOU to ACTION. Unfortunately or fortunately, our childhood cancer community is...yeah, rare, and we need all the help we can get.
Help to make sure that every Dad’s arm aches forever; not his heart. That Mom’s worry about her kid’s mischief; not if kidney damage from treatment will postpone the next round of chemo. For the kids, for your kid….help change the paradigm.
· Donate time and money generously to SU2C.
· Participate in fundraising events by CureSearch, Alex’s Lemonade Stands, St. Baldricks, The Rally Foundation and others throughout the year.
· Join the CureSearch Advocacy Network and contact your legislators to support full funding of the Carolyn Price Walker Conquer Childhood Cancer Act.
· Join PAC2 and the fight against childhood cancer.
Thank you SU2C and thank you for listening.
And acting. Because someday, God forbid, you may say…..damn it, it isn’t so “rare”.
AJs Dad
Bob Piniewski is a Project Coordinator, ironically cleaning up Superfund sites and saving bugs and people from risk; i.e. cancer causing agents. As PAC2 co-founder, he helped the childhood cancer community collaborate with SU2C to highlight childhood cancer. He lives a New Normal. He dedicates this to AJ, his “favorite” son and best friend forever….
