For the past two years, my right shoulder ached from throwing thousands of footballs to my 14-year-old son AJ, trying to lead him just right on deep post patterns. After the last throw, it would hurt 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 hurt from pitching as fast as I could so he wouldn’t hit me, but he always did. My shoulder hurt enough that I only slept on my left side -- rolling over on it would wake me in the night. But I didn't care. I loved it.
My shoulder eventually stopped aching. Now what keeps me awake at night is my broken heart. I have no one to throw those passes to. On January 5, 2008, AJ left us -- a victim of childhood cancer.
I will never forget the months I spent in the hospital with AJ. Sometimes it felt like my primary function was to not step on the green-colored tiles on my trips back and forth to the break room. That, to me, was the only thing I could truly control. It was my goal to never, ever step on one; then everything would be okay. Sounds ridiculous, doesn’t it? But I bet the nurses knew what I was doing. When you are fighting this war as a parent, it is hard to do much more.
Have you ever 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 try to be cool even though they’re bald and ready to throw up at any time? Have you ever seen a mom, dad or sibling alone in the break room at 3 a.m. with their heads in their hands, feeling alone, helpless, scared and mad?
I've seen it all and more. In December 2007, my son had to ask me, "Dad, what's hospice?"
I’ve seen enough. I want a cure for childhood cancer.
Because childhood cancer is often considered "rare," you may not know much about this devastating group of diseases. You may not be aware that federal and private funding for pediatric/young adult cancer research and survivorship is woefully inadequate. Breast and prostate cancer receive more funding by an order of magnitude than childhood cancer. In 2007, the NCI budget for cancer research was $4.8 billion, with just $0.17 billion directed to childhood cancers. While pharmaceutical companies devote some money to rare diseases, it’s not enough, and it’s not specific to the unique challenges of childhood cancers. As a son who has lost his mom and dad to cancer and as a father who has lost his son, I question the distribution of research money. What happened to women and children first?
Childhood cancer may be "rare" compared to illnesses affecting the entire population, but it’s not "rare" when it’s happening to your child.
Our kids have about a 1-in-300 chance of being diagnosed with cancer before age 20. Cancer is the number-one disease killer of our kids, taking more of them every year than cystic fibrosis, muscular dystrophy, asthma and AIDS combined. While strides have been made, the survival rate has not improved enough in nearly two decades. Each day 40,000 children and adolescents undergo treatment as they struggle to beat the lying, cheating diseases known as childhood cancers.
Pediatric cancers are different than adult cancers and require specialized treatments. And more focus is needed on childhood cancer survivors as they transition from pediatric to young adult care and are faced with are faced with a 60% chance of developing at least one chronic health condition (e.g. secondary cancers, major organ damage, developmental problems or infertility) from the "cure."
But it’s tough for parents in the fight to do much advocacy work. Those with children in treatment are advocating every day for the health of their child. Those who’ve lost a child may be overwhelmed with grief. Those with survivors may be ready to escape from the childhood cancer world. All understandable.
And the kids themselves? Well, they can’t vote, write checks or pick up the phone to call Congress.
Thanks so much Bob for your powerful story and for all you do for childhood cancer. I really, really wish that your arm was sore. AJ is so proud of you.
Thank you SU2C for publishing this article and taking an active stand in helping to bring recognition and education on Childhood Cancer. So much more is needed!
Well said and I didn't think you wrote too much. My hearts broken too so I cried pretty much the whole way through it, especially after Sis' part. Thanks for all you do. Being able to channel your grief into action takes tremendous strength and I admire you for it.
Mom of Keith, Jenna, and Sarah (forever 7, anaplastic astrocytoma)
Thank you Bob for all you are doing to raise awareness about childhood cancer! And a big thanks to SU2C for highlighting childhood cancer this month!
Finally some recognition. It seems to be our dirty little secret - that children DO get cancer and die. You are my hero Bob. Powerful message.
Thank you Bob for the article and thank you SU2C for helping to get awareness out there.This disease is horrible and took our sweet girl from us a year ago.Our hearts are broken and will never be in one piece again.I don't want this to happen to anyone else.We must fight this together.
Helen,proud Mommy of Maggie.
Thank you for your inspiration and hard work in raising awareness of pediatric cancer. No family should EVER have to walk in the shoes of those families who have fought this battle. Keep it going and we wil be there to support you.
Lala Smith, Grammy to ^Walker^
Bob, Thank you for sharing AJ's story.
SU2C, Thank you for putting childhood cancer in the spotlight.
I never knew it was so widespread until it hit my child. We are blessed with a survivor but will never stop looking over our shoulder.
Thank you Bob for your article. I have seen the pain and suffering of many children and their families first hand. Pediatric cancers are very different from adult cancers. Children seem to get double the chemo and radiation in most cases. It is a very tough road. Thank you for all of your hard work and dedication.
Thank you, AJs dad, for sharing a very personal journey with us in order to help others. And thank you SO much ,SU2C, for standing up to childhood cancer this month and continuing to do so! Your efforts are very appreciated by many, many people.
Thank you so much for all you do in memory of your son and all of the children that have died from cancer. You are such an inspiration to us all. Keep up the good work! You are making such a difference!
Misty Barger-Mom to Angel Emily(Rhabdomyosarcoma)
www.butterflyfund.org
Thank you for helping to spread awareness of the horrible beast of childhood cancer.
Thank You SU2C! Thank You Bob!
Thank you SU2C for recognizing Childhood Cancer Awareness Month. With awareness will come more money for research which will bring cures for the childhood cancers so kids can grow up and parents won't lose their kids....It will not come soon enough! Thank you Bob for all that you do with PAC2, We are the voice for the kids.
Thank you for featuring Bob's and other stories during Childhood Cancer Awareness Month.
-Amy Bucher, mom of ^^Arden^^ (forever 3) http://www.caringbridge.org/visit/ardenquinn
Thank you SU2C for recognizing Childhood Cancer Awareness Month !
www.caringbridge.org/visit/kelsiemckune
www.curechildhoodcancer.ning.com
Thank you SU2C & Bob for bringing much needed awareness to Childhood Cancer! Hopefully one day there will be no need for awareness, cause there will be no more. Spread awareness...find a cure!
Annaliese Deacon - aunt to ^angel^ Michael Brian
http://www.caringbridge.org/visit/michaelbrian7
PAC2
Thank you SU2C - thank you Bob - for sharing this story and for spreading awareness about a disease that has changed the lives of so many families. As the parent of a child who died as a result of childhood cancer, I applaud your efforts and accomplishments.
Debbie
freewebs.com/courtneynicole
Thank you SU2C for speaking for all of us..there definetly needs to be more attention put forth to finding a cure for childhood cancer. To AJ's dad thank you for a wonderful article..as a parent going through the fight right now, my heart aches for you and I pray each day to never have to face that loss.
Thank you SU2C, on the behalf of all parents and children affected by childhood cancer, for helping with Childhood Cancer Awareness Month!
Bob, thank you for your dedication to bringing childhood cancer awareness to everyone. AJ is looking down with pride in his eyes. I am in your corner, always.
Monique Gebeline, President
Frankie's Fight
www.frankiesfight.org
PAC2
Thank you SU2C, There Is nothing any greater then getting more voices joining in with the One voice united. Bob and the other folks at PAC2 do ROCK. Together we can all help each other, and more importantly, help find Better treatments, maybe even a cure, for childhood cancer.
Thanks for posting this.
Jim
Thank you SU2C for bringing attention to Childhood Cancer Awareness Month and the impact it has on our children and their families. Thank you Bob for inspiring so many of us to get together and fight for our kids, our future generations, our heroes.
Thank you SU2C for spreading awareness on September being National Childhood Cancer Month! So many families are living this horrible reality and anything that can be done to help spread awareness does not go un-noticed. Bob, you truly are an amazing Father!
Thank you Stand Up for letting the public know that Septmeber is Childhood Cancer Awareness Month. And Thank you Bob for all of you hardwork. You are an amazing father!
Thank you Stand Up to Cancer for recognizing Childhood Cancer, and the need for much much more to be done for these kids. AJ's Dad, , thank you also for such an amazing article.
Michelle Konish
thank you STAND UP for recognizing that SO VERY MUCH MORE needs to be done to help our littlest heroes. truly you are making the first step in what i hope to be MANY in this direction.
AJ's Dad Rocks.
dari mcmanus
PAC2
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.
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