I’m running my first marathon ever, on behalf of my daughter, Isabella, and to honor her last gift to me as her Daddy, wrote Stuart Santos of Charlotte, NC, in an e-mail to New York Road Runners a few weeks ago.
It was a letter as heartrending to read as it must have been to write.
Isabella Santos was diagnosed with stage 4 neuroblastoma, a pediatric cancer that forms in nerve cells, after she started having pain in her back and stomach. There is no stage 5. She was just 2 years old.
During her five years of treatment, much of which was conducted at Memorial Sloan-Kettering Cancer Center, Isabella several times was declared cancer-free only to have the tumors return. But Isabella, said her father, “was an unbelievably happy little girl.” She loved her American Girl dolls and her kitty, Jake; she liked going to the beach; and Central Park—which she visited on her frequent and lengthy stays in New York City for chemotherapy, radiation, and surgery—was one of her favorite places.
This year on June 24th, I celebrated my 41st birthday. It was a birthday like no other I have had because I knew it was the last birthday I would celebrate with her in my life. … As she sat on my lap, I opened my last gift from her.
As his birthday approached, “My wife had bought me a tie and a new shirt and just some light gifts, and my daughter said, ‘Mommy, that’s no fun. We’ve got to find something better for dad,’ Santos recalled in a phone interview, his voice cracking. “That was her nature, to always have more fun.” Like the time she had a huge bandage on her little head, covering a six-inch incision after brain surgery, and asked if they could go play in the park with that big slide.
The rapidly weakening girl and her mother, Erin, started searching the internet for the perfect gift, and came across something about training for a marathon. “Daddy’s always said that someday he’s going to run a marathon,” said Isabella. “Let’s sign him up for that.”
On Santos’s birthday, the little girl was struggling, but managed to come downstairs to sing “Happy Birthday” and give Daddy his gift: An entry into the 2012 ING New York City Marathon, to run for Fred’s Team, named for Fred Lebow, the founder and former race director of the Marathon who died of brain cancer in 1994.
She told me that running in this race would help raise money for research and that she knew I liked to run. I remember her telling me that she would cheer me on, with her pom-poms and cheerleader outfit. Neither of us would have thought that, only four days later, Isabella would pass away as she lay between [my wife and me] in our bed.
During her short life, Isabella was a regular at charity events, making cookies for families at the Ronald McDonald House and, on what would be her last birthday, donating all of her birthday gifts to the local children’s hospital. Because of Isabella’s desire to help and to be sure that other children felt the same love and support that she received, the Santos family created the Isabella Santos Foundation, and Isabella enjoyed the attention of TV interviews and radio shows as she promoted her cause. This year’s 5K Run for Kids Cancer in Charlotte, put on by the foundation, drew more than 1,600 between the 5K and kids’ fun run, and raised $175,000 to fund research into finding the cure that would elude Isabella.
While his daughter was ill, Santos often took a short run as a break, to clear his head. Since the end of June, running has served simultaneously as a distraction from his loss and as a way to hang on to Isabella, especially on the days when certain songs he’s downloaded for his playlist—some of Isabella’s favorites—come around.
“It gives me more strength,” he said, “but I’m sure sometimes people watch me run down the road and say ‘Is that guy crying?’”
Santos’s marathon journey has prompted the creation of a Facebook page titled “Let’s meet Stuart Santos at the Finish Line of the NYC Marathon!” Dozens of people are expected to cheer Santos in his final steps of the race, all of them wearing T-shirts emblazoned with a famous line from Dr. Seuss: “Don’t cry because it’s over. Smile because it happened.”
After the race, Santos and his wife will have dinner with their son, Grant, 6, and daughter, Sophia, 3. They will have more to celebrate than Daddy’s first marathon.
Sunday is also Sophia’s birthday.
Through the years of treatment at Sloan-Kettering, Isabella and I talked about the Fred’s Team runners as she noticed the orange shirts worn by her nurses and doctors walking the halls. I had always wanted to run a marathon but time commitments of a parent with a child battling cancer were always hard to come by. One day when she is healthy, I would say, I will run one and you will be there with me, to cheer me on. We will have so much to celebrate when I cross that finish line. But, that day never came.
So now I spend my training days running, dreaming and thinking of her. I talk to her and hope she can hear me as I spend the time reflecting on all the memories we made together. I run with hope in my heart that Isabella’s spirit will be there with me when I cross the finish line in November. I run for her, one of the greatest loves of my life, and the hope that another child can be saved through my efforts. The one last gift she gave me, was the best gift ever… the gift of saving lives. She believed in the dream of a world that would someday have no cancer; my hope it to give her that gift when I see her again.