SARASOTA — All Children’s Hospital in St. Petersburg will leave this year’s lobbying during the Children’s Hospital Association’s Advocacy Day in Washington, D.C. to one of their most charismatic speakers — 14-year-old cancer survivor Tony Colton.
Since the Sarasota teen was admitted to All Children’s at the age of 11 with a rare tumor, Colton has captivated his doctors, donors and, most importantly, other patients with his devotion to bringing awareness to issues facing pediatric cancer centers — one of his most recent efforts convinced the All Children’s staff to install a “weight-gaining station” in the hospital where patients can make their own protein-packed milkshakes.
Colton, the youngest of six adopted children of retired Sarasota police officer Connie Colton, barely bats an eye when he reads off the names of legislators he’ll speak to June 25, including Rep. David Jolly, Rep. Kathy Castor and Sen. Bill Nelson. He’ll share with them the importance of funding the Children’s Health Insurance Program, which provides insurance for children who don’t qualify for Medicaid but can’t afford private coverage.
Tony said he’s confident going into a week of lobbying in the nation’s capital with a team from All Children’s. The D.C. train routes and sidewalks he “knows like the back of my hand,” and his mother and 16-year-old adoptive brother are taking an extra week to sight see with him after the work is done, he said.
But memories of Colton’s last romp through the capitol could hang heavy over the trip. Last year, Colton was placed in a highly-selective trial treatment at the National Institutes of Health in D.C. While his treatments saw mixed results, he gained new friends to explore the metro lines and call with encouraging words when it came time to return to their hospital beds.
“Most of my friends I’ve made in the hospital, and a lot of them I still hang out with, too,” Tony said. “But that’s the problem when all your friends are sick, you don’t know how long you have together.”
One of Colton’s best friends from the National Institutes of Health, 17-year-old Michael Bruhn from Oregon, called him about one month ago to give his “brother” the news that in just a few days his cancer would claim his life. When he talks about that call, Tony’s voice never waivers and his eyes take on a somber, stoic stare.
“I remember leaving the house and talking with him for hours about all the stuff we did together and our plans,” Tony said. “But I don’t think going back to D.C. will be hard, because I know what I’m doing will be very good for other people. Though I do want to see NIH, just from the outside.”
Tony’s war with cancer began July 9, 2011, when he was 11-years-old.
The precocious child, who had already begun dreaming of which college engineering program he would attend and how his middle school “Odyssey of the Mind” team could top winning the world finals, became sick with what doctors at Sarasota Memorial Hospital initially thought was appendicitis. He mother drove him to All Children’s at 1 a.m. that night and he was diagnosed with clear cell sarcoma.
“My kidney was the size of a football,” Tony said with the faint smile of a fascinated teenager.
Tony was cleared of his cancer in February 2012 after removing his kidney and undergoing radiation and chemotherapy treatments, but the following year he relapsed. He had a tumor near his liver and another by his colon, and it took a three-month stay at the National Institutes of Health, treatment for a ruptured appendix and months of grueling treatments for him to once again get a clear scan in October 2013. Despite a 10-day stay at All Children’s when Tony contracted E. coli last month, he has remained in remission.
“It was horrifying, it all happened so fast, but I’m so thankful they sent me to All Children’s because they have so many specialized doctors and the staff is so hands on. He’s actually had his life saved there four times,” Connie Colton said. “It’s hard, I don’t know how we do it, I just use my faith and trust in the faith of God. You have to get through it first and then you can look back and think about how sick he was. I’m just so proud of him. You can see there’s something special about him, and we’re just living day for day.”
His small house in Sarasota is covered with artifacts from his battle with cancer — an old wheelchair sits outside by the front door and a large stack of board games and intricate 3-D puzzles that used to help make the days go faster are on a dinning room chair. His home is covered with photos of bald children hugging members of the Colton family.
If he weren’t going to D.C. he would be in All Children’s cancer camp with his friends, said Connie Colton. Yet Tony’s room is also full of reminders that he’s still a 14-year-old boy. He’s excited to start track and long distance running, and summer plans are full of trips to the beach and Orlando amusement parks.
Instead of trying to forget the constant discord the disease has created in his life, Tony embraces it. He would put together complicated Lego-scapes and give them to younger children in the hospital. He sold many of the intricate 3-D puzzles he put together in the hospital for $10 to $30 a piece at a local Relay for Life event, and donated the money to cancer research. When Ashley Krueger, one his best friends at All Children’s, was re-diagnosed with T-cell lymphoma and was in need of a bone marrow transplant, Tony raised about $25,000 through car washes, garage sales and other fund raisers. When his doctors saw how mature and well spoken he was, Tony became a regular at speaking engagements and fund raisers, often for crowds of 500 people or more. Sometimes he makes an outline, but mainly he speaks from the heart, he said.
“I want this to get very, very big. I want to do something important,” Tony said. “If I could do anything in the world I would make everyone aware, so whenever they’re on Facebook or watching TV they would see something about pediatric cancer. I want it be very well known that pediatrics only get a small percent of the funds set aside for cancer and they need more support.”