Vickroy: Giving a dying son the time of his life
DONNA VICKROY firstname.lastname@example.org | (708) 633-5982 August 24, 2012 8:56PM
Barb and Matt Stoginski hold a photo of their son Kody at their home in Steger, Illinois, Wednesday, August 22, 2012. The picture was taken by Barb at the families vacation spot in Wisconsin as Kody playfully tries to hug her after getting out of the water. Kody recently lost his his struggle with a rare form of brain cancer and the family cherishes the fun memories they had with him including a cruise sponsored by the Make A Wish Fondation. | Joseph P. Meier~Sun-Times Media
For those interested in helping fund the fight against childhood cancer, the Stoginskis recommend the following groups:
Children’s Hospital of Chicago Foundation, Department 4586, Carol Stream, IL 60122, Attn.: Dr. Stewart Goldman/DIPG Specific Research
The Cure Starts Now Foundation at thecurestartsnow.org
Alex’s Lemonade Stand at alexslemonade.org
Make-A-Wish Illinois at www.wishes.org
Updated: September 27, 2012 10:58AM
More than a thousand people came to Kody Stoginski’s wake.
Friends, family, a hundred Boy Scouts in uniform and local firefighters all paid their respects to the 11-year-old on that steamy July evening.
The next morning, Kody, who once served a day as an honorary firefighter with the Riverdale department, was given a firefighter’s funeral.
Knowing their son had touched so many people during his short life has helped Matt and Barb Stoginski, of Steger, work through the pain of losing him.
“Everyone he met automatically fell in love with him,” Matt said. “He was that kind of kid.”
Kody was diagnosed just before Christmas of 2010 with an inoperable brain tumor. Even an experimental proton therapy treatment program couldn’t boost his prognosis more than six to 12 months.
But the spunky Boy Scout whose “halo was held up by his horns,” Matt said, amazed everyone by living more than 18 months, much of that time filled with the goofiness, hijinks and tender moments that make childhood special.
“He was fortunate that he didn’t have the pain, headaches or the nausea that other kids with his condition have,” Barb said.
He was hospitalized only twice, for the diagnosis, Diffuse Intrinsic Pontine Glioma (DIPG), and again in October when he suffered seizures.
“I told his doctor, ‘He’s probably the healthiest dying patient you’ve ever seen,’ ” Barb said.
Matt and Barb were determined to pack Kody’s last days with good times. Kody loved to ride in his golf cart. He also liked to fish and swim at the family’s cabin in Wisconsin. He’d emerge from the lake soaking wet, make a beeline for his mom and ask for a great big hug.
“He was a prankster,” Matt said.
After the proton treatment temporarily shrank the tumor, he rode his bike up and down his street telling the neighbors the good news.
Last summer, the Make-A-Wish Foundation sent the family on a Nickelodeon cruise. They swam with the dolphins, visited the Wizarding World of Harry Potter at Universal Studios in Orlando, Fla., and participated in a live Nickelodeon contest that left the whole group slimed.
It was Kody’s first cruise, and he took an immediate liking to room service.
“We had two cabins. He’d order one thing from one room and then if he didn’t like it, he’d order something else from the other room, thinking they wouldn’t know it was him,” Matt said.
The post-cruise extension to visit national monuments, including the Statue of Liberty and the Liberty Bell, was equally exciting.
They were on a double-decker tour bus in Washington, D.C., en route to the Washington Monument, when an earthquake hit. Kody thought his brothers, Kevin, 18, and Kyle, 15, who were riding on the upper level, were responsible. The brothers thought Kody was to blame.
Later, when they were getting ready to head home, Hurricane Irene came whipping through the nation’s capital.
“I think we got the last flight out,” Barb said. “We were so stressed, but Kody thought it was so cool to be in both a hurricane and an earthquake.”
Later, with Kody’s last Christmas upon them, the family headed to Disney World in Florida.
Kody, who was homeschooled the past year, always thought of his brothers. Not only would he set his cell phone alarm to wake them up for school, something they did not particularly appreciate, but whenever someone gave him anything, he’d mention his brothers. When Bears star Brian Urlacher gave him an autographed football, Kody asked for two more. The middle linebacker said he only gave to the patients. Somehow, Kody ended up with three.
“Kody had the touch,” Matt said.
Barb and Matt took different approaches to Kody’s illness. Matt chose to focus on the present.
“Every day I woke up and said, ‘Whatever Kody wants, that’s what we do,’ ” he said. “We just had fun. I tried not to think beyond that.”
Barb, on the other hand, researched and struggled with what lay ahead and with the compromises she had to make to keep that monster at bay.
“It’s such a balancing act, choosing between treatment that could shrink the tumor and buy him time but make him feel uncomfortable,” she said.
Most days, Kody felt good. But whenever the tumor showed signs of growth, doctors prescribed steroids, which caused fatigue and loss of balance.
“The hardest thing for me was constantly having to move perimeters,” Barb said. “You start with a normal and say, ‘I’m never going to move, never going to resort to a certain thing,’ but then his condition would worsen and you’d say, ‘OK, we’ll do it.’ ”
All the while, Barb said, she knew the cancer was never going to go away.
“There was no magic pill,” she said.
She kept a journal on caringbridge.org and read the journals kept by other parents of children with DIPG. She found online support groups. She knew exactly what her youngest son was going to endure.
The Stoginskis were always upfront with Kody; he always knew what was happening to him. Throughout the ordeal, Barb said, Kody never expressed fear, only worry and only a few times.
Kody died July 20 at home.
Matt and Barb now struggle to fill the void left by their gregarious, high-spirited son.
“One day at a time,” Barb said. “One day at a time.”