Always smiling, Jonathon Fletcher seems happier than most 5-year-olds.
“He’s the happiest of all my kids,” said Jonathon’s father, David Fletcher, who has six other children.
“Jon Jon” as family and friends call him, also appears healthy.
But looks can be deceiving.
“They (doctors) say we will be lucky to have another three or four months with him,” David says.
Underneath the playful smile, the blond hair and glasses lurks a silent killer that will snatch Jon Jon from this earth.
His killer is named brain stem glioma. It’s a disease in which non-cancerous or cancerous cells grow in the tissues of the brain stem.
“He has a tumor in it,” David says.
The brain stem controls breathing, heart rate, and muscles and nerves used in seeing, hearing, walking, talking and eating.
The tumor is growing, forcing pressure on the brain stem. One day, the tumor will rupture the brain stem.
It’s like a ticking bomb.
“Basically, we can wake up tomorrow and the thing can herniate and he could be gone,” David says.
It wouldn’t be a sudden death. He could be unconscious for days or weeks until his breathing ceases.
Jon Jon was diagnosed on Dec. 2, 2008. Doctors said then that normal life expectancy was 6 to 10 months.
“They didn’t expect him to be here for Thanksgiving, Christmas or 2010,” Tina Fletcher, his mother, says. “We still expect the same outcome but how much time we have we just don’t know. You pray for a miracle but at the same time, you’ve got to be realistic. In a way, it’s a miracle that we’ve have him here 14 months. They didn’t expect that.”
But the likelihood of Jon Jon celebrating Christmas 2010 is “very minimal,” Tina says.
Survival past 12 to 14 months is near zero percent. Brain stem tumors account for 10 percent of pediatric brain tumors. Peak incidence is between ages 5 and 10.
Jon Jon is living the rest of his days filled with excitement, much like the months following the grim prognosis.
The family took him to Orlando, Fla., on a week-long Dream Factory trip to Disney World in January 2009.
They went to Branson in 2009, and numerous trips to CoCo Key Water Resort in Kansas City and the Great Wolf Lodge.
“He absolutely loves the water,” Tina says.
And speed.
Jon Jon rode shotgun in a NASCAR stock car, speeding down Kansas Motor Speedway on April 4, 2009.
They took him on a helicopter ride in St. Joseph before Christmas.
On Jan 2, Jon Jon was the toast of Sugar Creek, receiving a key to the city. He got to ride in a fire truck and police car.
Sugar Creek businesses donated several items to the family.
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Jon Jon’s symptoms involved a droopy eye and an odd walk.
His left eyelid was droopy, like a form of palsy.
Tina thought Jon Jon’s sagging eyelid was related to stigmatism the boy had endured previously.
The palsy-like symptoms grew worse.
But David and Tina got worried by their son’s strange walk.
“It was sort of like he was shuffling his feet,” Tina says. “He was walking very stiff legged. It got to the point where he would drag one leg.”
The pediatrician attributed the palsy to cold weather. Jon Jon did not walk strangely at the time of the doctor’s visit, Tina says.
A week later, on Thanksgiving 2008, the boy could barely walk.
“We were holding his hand when he stood up because he was so unsteady,” Tina says. “All he would say was ‘will you hold me?’
Jon Jon did not tell his parents what was bothering him. He never has. “Never once has he complained throughout this entire illness,” David says.
A battery of CT and MRI scans revealed the tumor.
Jon Jon started radiation treatment shortly after that. The treatment ended in January 2009. He also underwent chemotherapy.
An MRI a month later revealed the tumor had shrunk a sizable amount, Tina says.
But the mass has started growing again last December.
Surgery is out of the question.
“Because of where the tumor is located at, doctors told us they can’t operate on him,” Tina says.
Jon Jon’s tumor may not be malignant, but doctors could not perform a biopsy for the same reason they cannot do surgery: It’s too risky because of the location.
“Everything I’ve read about surgery says that he would die in surgery,” David says. “There’s nothing else that they can do.”
Tina copes by staying busy. She stays busy by taking care of Jon Jon and her three other small children. Jon Jon also has three step-siblings, all teenagers.
“There’s days you kind of forget this is even happening,” Tina says.
Jon Jon doesn’t know his condition.
“He doesn’t understand,” she says. “We’ve had conversations like this around him ever since he’s been diagnosed.”
The mere morbid thought of making funeral arraignments for their smiling 5-year-old was one of the toughest aspects of the ordeal.
There will be no visitation.
“I want this to be a celebration of life,” Tina says. “I don’t want it to be drab and dark like a visitation.”
Tina mentioned a balloon release in memory of Jon Jon. The balloons would be a mix of his favorite colors: pink, green and purple.
“We think we’re going to have something at our church rather than a funeral home,” David says.
They belong to the Kansas City Church of Christ at 103rd and Quivera in Kansas.
“Everybody’s like ‘I don’t know how you guys are handling this.’ Well, it wasn’t like we were given a choice.” David says.
