Over the coming days and weeks I will be sharing a series of posts that tell the story of Uplifting Athletes–a charitable effort that grew out of the personal tragedy of losing my father, Don Shirley, a respected role model and community hero. In writing these posts, I hope that I might be able to share personal insight into the hurdles that had to be cleared before the growth of Uplifting Athletes could begin. I encourage you to share your own thoughts and experiences with me as I relive this journey.
A Simple Plan
Jones, me & Costlow in the early days
Uplifting Athletes started with an innocent conversation between two college football players. The story has been well documented, but I never mind sharing the details. In the fall of 2002, I was a receiver with the Penn State football team. I was on my way home from practice one day when my cell phone rang. When I saw my mom’s name on the screen, my heart dropped to my stomach. It was one of those calls that I knew was going to bring bad news. Sure enough, I answered the phone and she was so choked up that she couldn’t even talk. I pulled into the parking lot in front of the Nittany Lion Inn while she composed herself enough to tell me that my father had been diagnosed with renal cell carcinoma (commonly known as kidney cancer). They were told that he’d be lucky to see me graduate six months later.
Thanks to Coach Joe Paterno’s teachings–You’re never as good as you think you are when you win, and you’re never as bad as you think you are when you lose–I had developed a pretty level head. You hear about people beating cancer all the time, right? My dad had lived a healthy lifestyle – he didn’t drink or smoke and remained active as a high school baseball coach for 30-plus years. He was a fighter. He was going to be a survivor. Everything was going to be OK.
That fall, I went with my parents to the best medical centers in the mid-Atlantic region. Everywhere we went, though, we were told that nothing could be done. In my mind, that meant we just hadn’t found the right doctor yet. We finally got a referral to Johns Hopkins, which in my mind was like going to see the Wizard of Oz. As excited as I was to go, I was equally heartbroken when we left. The doctor didn’t even stay in the room long enough to close the door. All he said was that there was nothing they could do.
On the way back to State College, it hit me that there had to be more to this story. So I called the American Cancer Society and was told that kidney cancer does not typically respond to standard first-line treatments such as chemotherapy or radiation and is not one of the organization’s priorities. They were sorry, and I was now more desperate. My next call was to the Kidney Cancer Association. That is when I learned why nothing could be done: Kidney cancer affected fewer than 200,000 Americans and was classified as a “rare disease,” meaning there was little financial incentive to make and market new treatments.
The rest of the trip home left me plenty of time to think. I had always assumed that cancer was cancer. I never considered different cancers to be different diseases. But they are. Different molecular pathologies. Different treatment protocols.
So now what? By the time I walked into my apartment, I was pretty aggravated. My roommate and teammate, Damone Jones, was sitting on the couch watching TV and greeted me as usual. Except this time, when he asked how my day was, I expressed my frustration with the situation that my family was facing. It wasn’t that “nothing could be done.” It was that it wasn’t important enough to do anything. Without hesitation, Damone shrugged his shoulders and suggested that we do something. “We’re Penn State players,” he said. “If we do something stupid, it’s on the front page of the papers. Let’s take advantage of the position that we’re in and use that spotlight to make a difference.”
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