A 5-year-old Columbus boy lost his battle to cancer 12 months ago, but his “Angels” are still fighting for a cure.
Just before preschool, Peyton Whittington was diagnosed with diffuse intrinsic pontine glioma, a disease that strikes the brain stem and renders nervous system function impossible. He died a year later.
His parents, Lynn and John Whittington, still are grieving. But they are dedicating their lives to finding a cure.
Lynn Whittington launched the Peyton’s Angels Indiana Chapter of the Cure Starts Now in December. She has been preparing for the chapter’s first event ever since — and now it’s here.
Carnival for the Cure, an afternoon of games and prizes in memory of Peyton, will be from 1 to 5 p.m. Sunday at Ceraland Park.
All proceeds will go toward finding a cure for DIPG and other pediatric brain tumors. Statistics show that fewer than 10 percent of children diagnosed with the disease will live longer than 18 months, and survival is even more rare.
“I look at DIPG as an intruder who broke into our lives, tortured and killed my son,” Lynn Whittington said. “I’m going after this disease with everything I have.”
It was two years ago on Father’s Day when the Whittingtons’ world crumbled.
Peyton was learning to ride his bike on June 15. The next day, he felt dizzy and was seeing two trees in the family’s front yard where only one stands.
“He couldn’t even stand or walk,” John said. “He was acting the same as somebody who drinks too much, but the problem is it just keeps going.”
Peyton was bleeding in his brain and was rushed by ambulance to Riley Hospital for Children at Indiana University Health in Indianapolis on June 17.
He fell asleep there during an MRI — the moment doctors realized how serious Peyton’s illness was.
“The doctor burst through the doors and started shaking him,” his mother said.
“She said he should not be sleeping. He was slipping into a coma. She said, ‘We need to do something now, or we’ll lose him.’”
The tumor was in his brain stem and it could not be removed.
As Peyton went into surgery to release the pressure, his family said goodbye to him. They did not know whether it would be for the last time.
But they had another year with Peyton.
The Whittingtons took a helicopter ride through the Grand Canyon. They saw the Beatles LOVE show in Las Vegas. They painted pictures with dolphins by putting paintbrushes in the animals’ mouths.
John Whittington said the family learned to live for the moments between MRIs, which were scheduled for every 30 days. It was the MRI that would reveal whether the tumor was growing.
“We knew one of the days it was not going to be good news,” he said.
They drove an RV through nine states so Peyton could see his country. They hiked to the top of Pike’s Peak and visited beaches and his great-grandmother. Peyton met Spider-Man and took lots of airplane rides.
“We wanted to experience everything we could as a family,” John Whittington said. “We really did live like there was no tomorrow.”
But tomorrow came and the tumor was growing.
Peyton went through radiation therapy and chemotherapy, but he also had fun with friends and family.
On June 2, 2013, Peyton’s parents threw a party for him after the Miracle Ride for Riley. There was a tent set up and motorcycles rode up the hill to the Whittingtons’ home southeast of the city. There was a magician, food, prizes and games.
Peyton’s mobility was challenged at that point, so he played checkers and Memory with his friends.
As Peyton’s friends left the party, they showered him with hugs and kisses.
“They said goodbye to him that day, but they had no idea it was forever,” John Whittington said.
Peyton died peacefully in his mother’s arms June 4, 2013.
Peyton’s picture still hangs on the wall next to his twin brother Stillman’s most recent school portrait.
“It’s hard seeing Peyton stay the same age and watching his brother get older,” his mother said. “We had a hard time changing that photo out.”
There are still times she is overcome with grief.
Like when she reaches down to hold Stillman’s hand and instinctively reaches for Peyton’s, too. Or when she buries her face in the shirt Peyton died in, only to learn the scent has disappeared.
She said there is not a day that goes by that she does not shed a tear or two.
June 8 marked the one-year anniversary of the day Lynn and John Whittington buried their son.
Though she usually tries to stay strong, Lynn Whittington hid in her bedroom that day. She slept, watched TV and prayed to God and to Peyton.
“Every time I dozed off, I dreamed of him,” she said. “It’s funny, in my dreams I no longer see him as disfigured from the tumor like he was in that last year. I always dream of him the way he was before. He is always smiling and full of life and energy.”
She said she thinks that is Peyton’s way of telling her that he is happy and healed.
His father misses Peyton when he sees the stack of Republic newspapers in his closet. Peyton would run upstairs with the day’s edition before Lynn could throw it away.
He would sit on his bed with John and look at the weather maps to see where it was warm and where it was cold.
John Whittington is not the biological father to Peyton and Stillman, but he wanted to claim the twins officially as his sons after Peyton’s death.
On Oct. 31, he became the first father in Indiana to be allowed to adopt a son post-mortem.
“He has loved them since the first day he laid eyes on them,” Lynn said. “He views them as his own and they only know him as their daddy.”
Stillman also struggles with the loss of his twin. His parents said he talks about Peyton all the time. He races toy cars with him, and he plays checkers with him by moving both pieces.
“He’s still in his heart. They have that bond,” their mother said. “Stillman recently said that Peyton is not in heaven. That he is here with us, but we just can’t see him.”
John and Lynn Whittington have used that opportunity to teach him that like Jesus, those whom they love are both in heaven and in their hearts.
Peyton never met his baby sister, Alexandria Whittington, who was born two months after his death — but he still left his mark on her. Before her birth, Peyton nicknamed her Pickle, and Lynn Whittington sometimes calls her “our little Pickle.”
She said Alexandria has a personality of her own, but her mother still sees Peyton in her.
Peyton also made an impact on the Rockcreek Elementary School community, where he attended school. Lynn Whittington sees that when she browses Instagram and finds pictures of her son with the caption “#MCM,” a hashtag that stands for Man Crush Monday.
The school raised nearly $400 through Caps for a Cure, where students can bring a $1 donation and are allowed to wear a hat for the day. Cierra McCauley, who was battling cancer alongside Peyton, helped raise $800 with her dance class at Sonya’s Dance Zone.
“It’s really amazing to see the impact a preschool student has on the entire school,” John Whittington said.
Cure starts now
Even after he is gone, his parents are convinced that Peyton is continuing to make a difference.
John and Lynn Whittington donated Peyton’s tumor for research. They have learned the tumor is still growing — news that brought them anguish during Peyton’s life but joy after death.
That development means scientists can watch how the tumor progresses and benefit from that information.
“It’s hard, but if people don’t make that decision, research will never advance,” John Whittington said.
They are also going after the cure with money.
Peyton’s Angels Indiana Chapter already has raised more than $17,000, with proceeds from Sunday’s carnival adding to the total.
There will be a silent auction for items including gift baskets and getaways.
Hackman’s Farm Market and Greenhouse donated plants to sell at a booth called Planting for Peyton. Right after Peyton died, people across the country bought plants and on a certain day planted them in memory of him. They would send pictures to Lynn of their gardens.
John Whittington said the chapter is not asking anyone to turn over a blank check. They have done their research on The Cure Starts Now and believe in its mission.
While most money from cancer awareness organizations is allocated to cancers with more victims, The Cure Starts Now focuses on pediatric brain cancer.
DIPG is one of the most resistant of all cancers to chemotherapy treatments. It affects primarily children, whose treatment has in the past led to innovations in other forms of cancer.
“Put together, these obstacles offer researchers a chance to revolutionize cancer research and prevention,” according to the foundation.
The Cure Starts Now, with the help of Peyton’s Angels Indiana Chapter, is searching for the home run cure.
“We really have turned this into a passion,” Lynn Whittington said. “Hopefully one day we’ll stop, but only if we find a cure.”