Howard and Dana Scott know the searing pain of losing a child. But from that loss comes hope for other cancer patients.
The first hint of the heartbreak to come for Howard and Dana Scott happened in January 2006 when 5-year-old Tyler fell while playing basketball.
Tyler was the easygoing, sweet-tempered one of their four boys, but that afternoon he cried hysterically. He had trouble moving his left arm and couldn't grip with his fingers, yet Dana didn't see anything wrong. For a week, neither did the doctors. They suspected a strained nerve.
The diagnosis, when it finally came, seemed unthinkable.
Tyler hadn't hurt himself playing ball. It wasn't something Dana and Howard could fix the way parents are supposed to fix cuts and bruises.
Tyler had cancer.
It was a rare, aggressive form of cancer on his brain stem that they had never heard of, called diffuse intrinsic pontine glioma. They flew to St. Jude Children's Research Hospital in Memphis, but cancer specialists there told them there was nothing they could do to save Tyler.
One day he was playing with blocks in preschool and life was good and the biggest challenge was to get him to clean his room.
A few days later, he was dying.
It hurt so badly, Howard had to do something.
An idea came to Howard at St. Jude. As painful as it was to watch his son die, Howard felt a sense in the hospital of unbelievable hope. Its mission is to find ways to prevent and cure catastrophic childhood diseases.
“There was no hope for Tyler,” Howard said. “We wanted to give somebody else a chance, and have Tyler's legacy live on.”
Howard decided then, before Tyler died, to set up a foundation to raise money to find a cure for the type of brain-stem glioma that Tyler had. Howard and Dana agreed that they would also donate Tyler's tumor to St. Jude for research.
About 250 children are diagnosed every year with diffuse intrinsic pontine glioma; every year about 250 children die because of it.
Brothers say goodbye
After four days at St. Jude, Howard and Dana flew back with Tyler to Charlotte so his brothers could tell him goodbye. The boys were 9, 7 and 3 then, and they brought farewell messages with them to the hospital:
We love you.
We'll miss you.
We hope you build a beautiful house in heaven.
Then the boys went home with their grandparents, and Howard and Dana lay down on Tyler's hospital bed, one on each side of him, as his breathing tube was removed.
Tyler gasped for breath. Howard and Dana held theirs and waited.
To their surprise, he began breathing again and settled into a rhythm.
For 81/2 hours, Howard and Dana lay beside their son and listened for every breath until he took his last.
‘We talk about him'
Many parents know what it's like to lose a child. Only Howard and Dana know what it's like to lose Tyler.
“I don't expect people to feel the same way I feel,” Dana said. “But we don't want people to feel like he's a subject that can't be brought up. We talk about him all the time.”
They celebrate his birthday. They hang his stocking at Christmas. They visit his grave. Aidan, their youngest boy, now 5, tells him good night every evening before he falls asleep.
Their memories are happy memories – of Tyler tagging along with his plastic mower as Howard mowed the lawn, or trying to cut down limbs with his little saw, or cleaning up a neighbor's yard with an electric leaf blower almost as big as he was.
Tyler didn't live long enough to build a house or write a best-seller or leave his mark on the world in a conventional way.
And so it has fallen on Howard and Dana to make sure he is not forgotten.
The path to healing
Howard, who is 39, channeled his grief by doing what many grieving parents have done – raising money to help other children.
You may recognize some of their children's names:
Hope Stout, who died of a rare form of bone cancer called osteosarcoma. Margaret Harris and David Silverman, who both died of brain tumors. Alex Ervin, who was killed in a car crash.
And some of their causes:
Make-a-Wish Foundation. Hopebuilders 5K. Slow Down for Alex.
Just as no one grieves the same way, no parent heals the same way. Some parents who lose a child find that it helps to do something that could save another child's life.
It gives meaning to their child's death. It helps them heal.
Tyler's Treehouse
Ten days after Tyler died, Tyler's Treehouse Inc. was born.
Dana was hesitant. It seemed too soon. Her way of healing was to turn inward, and to family and friends. She and Howard would also go to counseling at KinderMourn for a year.
But Howard needed something tangible to do, and Dana supported his decision.
“You're supposed to take care of your children,” Howard said. “I had feelings of ‘What did I do wrong?' Could I have done something different?'
“The foundation was something I could control. It was something I could make happen.”
At its first fundraiser, a 5K race and a mile fun run in September 2006, Tyler's Treehouse raised $12,500 to help finance a study at St. Jude of diffuse intrinsic pontine glioma.
Talking about Tyler
Howard works as a business development manager for a bottling equipment company and travels a lot. He's outgoing, comfortable talking with strangers and he tells most everyone he meets about Tyler.
A man who sat next to him in an airplane was so moved that he came to Charlotte in 2007 to play in a golf tournament that raised money for St. Jude.
In its first two years, Tyler's Treehouse donated $125,000 to the hospital. It gave away two $1,500 college scholarships to graduating seniors on their neighborhood swim team and a $1,000 scholarship to a lacrosse player to play for Team Charlotte.
“I'm a positive person,” Howard said. “The foundation helps. It's positive. If I couldn't do something with this, the despair would eat me up.”
Not a day goes by that Howard and Dana don't think of Tyler. Not a day goes by that they don't ache to see their son.
Every morning when they wake up, they remember. Every night, as they drift off to sleep, they remember.
With the foundation's help, they hope that one day researchers will find a cure for the cancer that killed Tyler. It is comforting to know that he will have played a role.
In his short life, Tyler will have made a difference.
