Getting behind childhood cancer fight
September is Childhood Cancer Awareness Month.
I was not aware of this until just last year.
I also wasn’t aware of the fact that close to 0 percent of pharmaceutical company research dollars are spent on childhood cancer research as compared to over 60 percent on adult cancers.
Or that only two drugs have been developed for pediatric cancers in the past 20 years.
Or that approximately 13,500 children are diagnosed annually with cancer. Or that over two-thirds of survivors will suffer long-term effects.
Or that another 40 percent suffer from severe illnesses or die from illnesses such as secondary cancer, and that by the time the survivor reaches 45, more that 90 percent will have a chronic health problem. The incidence of invasive childhood cancers is up 29 percent in the past 20 years.
I also didn’t realize how much childhood cancer differs from adult cancers.
Children’s bodies are in developmental stages and cancer treatments substantially affect that development. Many cognitive and physical abilities are altered for life. Radiation to a child’s brain can significantly damage cognitive function, limiting the ability to read, do basic math, tell time or even talk. Physical and cognitive disabilities may prevent childhood cancer survivors from fully participating in school, social activities and eventually work, causing depression and feelings of isolation.
I think it’s safe to say that most of us know of someone who has been at least marginally affected by childhood cancer, while some of us are intimately connected through friends and family.
So why don’t we know more about many of the challenges facing this disease?
Because unfortunately, childhood cancer isn’t considered a "large enough" market to take seriously.
The first step to finding a solution to a problem like this, is to identify the problem. In my opinion, the problem here is clear. Collectively, we’re just not doing enough.
But luckily, there are some brave young fighters who intend to something about that.
Meet Dakota Bennett
Shortly after I joined the Cleveland Browns in 2010, I received a call from a local restaurant called Sushi Rock. They heard about a regular TV segment we did in New Orleans with local sports anchor Fletcher Mackel, where we’d bring in teammates each week to create custom sushi rolls, and a portion of proceeds from the sale of each roll would benefit an organization that provides care and support for children living with cancer and their families.
Customers could walk into Rock-n-Sake New Orleans on a given night and order the "Bleu-Brees Roll" or the "Marques Roll-ston" or "Vilma’s Viciously Delicious Roll." Good meal. Good cause. Players and fans alike loved it.
We decided to launch a similar campaign in Cleveland to benefit children in Northeast Ohio who were battling cancer. For our opening show, we held a sushi rolling contest at the restaurant where we matched the kids up against some of my teammates, including Ben Watson, Ray Ventrone and Tony Pashos.
That was the day I met Dakota Bennett, a 15-year-old star distance runner in a battle for his life.
When the contest began, it became clear that Dakota was a natural leader. He encouraged his young teammates, organized the line-up, and even barked trash-talk at his gargantuan Browns opponents. At one point he shouted: "Why don’t you guys move that fast in your football games?!" He was in my teammates’ heads, and I loved it.
Dakota had brain cancer. And Dakota never stopped smiling.
That was the beginning of our friendship.
Dakota is now 3 1/2 years cancer free, and there’s no call I look forward to more than his, every six months, telling me his cancer scans have come back clean.
But Dakota hasn’t let the "end" of his cancer be the end of his battle with the disease. In fact, I would argue that his fight has just begun. Now he’s on a mission to help other kids like himself.
In the last few years, Dakota hit the public-speaking tour to share his story and has organized fund-raising campaigns.
Dakota graduated from high school this year and is now enrolled at a school where’s he studying to become a homicide detective. He loves forensics. I guess you could say he’s a natural problem solver.
We spoke on the phone this week, and he was busy working away in a crime scene lab. He’s also the school president and writes regular blogs on campus. None of this surprises me — he’s an absolute go-getter.
Meet Karlie Plas
At the sushi-rolling competition in 2010, I met a young lady named Karlie Plas. She was quiet and sweet, but fiercely competitive.
I learned that day that Karlie had been diagnosed in early 2007 with stage IV Aveolar Rhabdomyosarcoma – a type of cancer in the muscles attached to the bones – shortly after she had found a bump on her inner thigh.
Karlie was given a 10 percent chance of survival.
The cancer spread rapidly throughout her body, with bone lesions in her skull, both femurs, her pelvic area and ribs. She endured a seven-hour surgery to remove the main tumor from her upper thigh, which was the size of a child-sized football. She had 54 weeks of intense chemotherapy along with 11 weeks of radiation in her first year of treatment. Her first remission was only four months long.
In the six years since, her cancer has continued to spread and the tumors have continued to grow. She has had 20 different kinds of chemotherapy drugs and five rounds of radiation during her treatments. She battles with short- and long-term memory problems, neuropathy in her hands and feet, has difficulty with balance and walking, menopause, permanent hair loss and no left breast.
Every glimmer of hope seems to be met with another dose of bad news.
Karlie’s mom, Kellie: "Cancer has been in our lives for over six years but it will not consume us. She is the strongest, most positive person I know and I am lucky to call her my daughter."
Karlie is living with cancer, and she never stops smiling.
In 2012, Karlie was crowned the Queen of her Senior Prom. To say she was glowing with joy and excitement that night would be an understatement. She has become one of my favorite "follows" on Twitter. Her perspective and positivity is inspiring.
During the 2010 holiday season, we participated in a program initiated by the Cleveland Browns through which players and their families would buy gifts for families in need. By chance, we were paired with Karlie’s family.
As my wife and I were reviewing their wish list, we saw that Karlie wanted a music CD of a group called The Band Perry. I had never heard of them, so we did a quick search to have a listen.
That’s when I heard the song "If I Die Young." And that’s when things became real.
I don’t know if it’s because the band’s lead singer is a young blonde woman, and perhaps that made me envision Karlie singing those lyrics. Or if it’s because I have three daughters of my own and it’s painful to imagine them experiencing something similar. Maybe both. But when I hear this song, it rips my heart open.
There’s a boy here in town, says he’ll love me forever
Who would have thought forever could be severed by
The sharp knife of a short life
There are so many of us that want to help people like Karlie, and we just don’t know how. It can be maddening sometimes.
Doctors recently informed her that they discovered three or four new tumors, and she has begun another round of radiation treatment.
Karlie will be 20 years old next month. That means she has been battling cancer through her entire teen years.
Shortly before I began training camp in 2012, I received a message from Dakota while sitting in my condo in Westlake, Ohio. He wanted to schedule a "lunch meeting" with me to outline an idea he’d been working on.
Imagine that — a 16-year-old kid calling a business-style meeting with a professional football player. Like I said, he’s a go-getter.
So we meet at a place called B-Spot, one of my favorite burger joints in town. Dakota came prepared with notes, ideas, bullet points — he was on a mission. The gist? He wanted me to help him create a national Childhood Cancer Awareness campaign in the NFL, much like the Breast Cancer Awareness campaign we see every Sunday in October in NFL stadiums.
The color signifying Childhood Cancer Awareness Month is gold. Dakota’s vision was to see gold towels, shirts, billboards and the like, in the same way we see the color pink highlight our fields during Breast Cancer Awareness Month.
My mother is a two-time breast cancer survivor, so I’ve always had a deep appreciation for the NFL stepping up in this area. Lives have been saved because of it, for the mere fact that this campaign creates early-detection awareness at a level that’s unprecedented.
So this got me thinking: Dakota’s right. Why can’t something like this happen to support children living with cancer? There are clear areas of need, and it’s important for more folks to understand where our efforts have fallen short. More can be done.
It’s probably better to just let Dakota explain:
"I want to see this campaign happen because I want to bring a stop to cancer’s crusade. My mission ever since I was diagnosed with cancer was to make a difference — it doesn’t matter the size. All that matter is that I made one. Children are our future and some kids, including myself, had no one to look up to when I was fighting. Kids need support when going through a life changing journey — kids look up to superstars like NFL players. If we could get support from them, together we can end childhood cancer forever. Enough is enough."
Just a kid? I don’t know about that. This sounds like a man on a mission.
One year after that "business meeting" with Dakota, we hear from Karlie’s family. She, too, wants to see a similar campaign in football. Karlie and Dakota weren’t conspiring here either. These are two independent requests from two "kids" who recognize the need for help — one who needs help and the other who needs to help.
Enough is enough, right? We were given our marching orders. Time for some action.
We began reaching out to teams on a club-by-club basis to gauge their interest in participating in some capacity. The response? Overwhelmingly positive.
The Browns and Saints were immediately on board and wanted to know what they could do to help spread the word. The Jaguars, Vikings, 49ers, Raiders, Chiefs and Rams — all in. We discovered that there are countless other teams with existing Childhood Cancer Awareness Month activities, like the Eagles, Colts and Seahawks.
Nearly every team has responded with their support and has some kind of initiative in place. And Tom Coughlin of the Giants is a staunch supporter of Childhood Cancer Awareness Month and even wears a gold pin on game days.
This weekend you’ll see young patients and their families sitting in the bleachers and standing on the field during pre-game, wearing gold and supporting their favorite teams.
Then I thought to myself: I work at FOX Sports now. Might as well see if they want to participate. Again, all in. Talent on their weekend broadcast teams will be highlighting the campaign during their on-air coverage, wearing gold pins in honor of the children who so bravely fight this disease.
All of this support has been so encouraging. The conversation has already been started around the league. Everyone wants to help. And collectively, we can help.
So, hopefully, one of these days you’ll turn on your TV to watch your favorite team, and you’ll see gold towels on the playing field, coaches wearing gold pins, and players who have shaved their heads in support of children with cancer. And when that happens, remember how that movement got started.
It started with two kids, Dakota and Karlie, who had an idea.
They just needed a little help.