- May 5, 2024
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After Sonny’s customer Ken Powell’s 21-month-old son, Kase, was diagnosed with a brain tumor, restaurant staff stepped up to help.
For the past three years, Ken Powell has eaten lunch at Sonny’s Real Pit Bar-B-Q almost every workday. He always gets the same thing — a char-grilled chicken breast, the salad bar and an unsweetened iced tea — and he always asks for Jodi Weed, who has served at the restaurant off and on for nine years. If she’s not on, he requests Alex Bogaert who, every time, will joke that she’s his “last resort.”
But during one August afternoon, something changed. Jodi and Alex, whom Ken calls friends, were told that his 21-month-old son, Kase, had been diagnosed with a brain tumor.
“We were devastated,” Weed said. “When you see someone several times a week, every week, you get to know them. Like I said, (we) are friends. … It’s a little closer to home when it’s someone that you know personally.”
Weed, Bogaert and the rest of staff began brainstorming ways to help.
Little Kaseman
Kase Powell, born 2 pounds, 4 ounces, is quiet and happy. With blond hair wisped across his forehead, he sits and studies the room. He turns his head and smiles at his dad.
His twin brother, Knox, born 4 pounds, 8 ounces, moves with heavy feet and chatter. He stops, pressing the glass on the family’s artificial fireplace. He is healthy.
The Powells first brought Kase for a checkup in early June because of vomiting. Initially, the doctors thought it was his equilibrium. Then, they pointed to his sinuses. Then, a reaction to anesthesia.
A month later, he was given a CAT scan. Instead of the pediatrician, the neurosurgeon met the Powells in the waiting room.
“It doesn’t really hit you until the doctor says, ‘Your small son has a large mass in his brain,’” Ken Powell said. “You don’t know how to be in that moment. … You don’t know how to react.”
“We had our moment when we cried,” Amy Powell said. “We had our breakdown. But we regrouped, because we had to — for him.”
The two say they never believed the initial diagnoses, but they never dreamed their son had a tumor between his brain’s third and fourth ventricles, on top of his pituitary gland, hypothalamus and optical nerve.
After two exterior ventricle drains to relieve skull pressure Aug. 15, Kase had his first surgery, a seven-hour extraction which removed 90% of the tumor. Although the Powells were told that in only 5% of cases do tumors metastasize to the spine, an MRI revealed that Kase was in that 5%.
The tumor had spread as inoperable speckles from his neck down.
The Powells sought second, third and fourth opinions. Containing characteristics from several tumor types, the type of cancer still has not been defined by the doctors.
“He’s just now getting his legs back and starting to eat a bit,” Ken Powell said. “He’s getting back to being the old Kase … He’s always been a fighter.”
Kase returned home Sept. 2. Next, the 21-month-old will begin chemotherapy.
The Sonny’s crew
The Sonny’s benefit event, called “A Kiss from Kase,” will take place Wednesday, Sept. 28. Raffles for free meals will be held, and 10% of the day’s proceeds will be donated to the Powells.
Dana Macdonald, Sonny’s manager, said a similar event held at a Titusville Sonny’s — which she admits is a larger volume store — recently raise about $12,000.
“We couldn’t be any more excited to help out Kase and his family,” Bogaert said. “Sonny’s is kind of like one big family. We work together, make each other mad, cry to each other, laugh with each other, and most of all (we) support one another.”
Florida Hospital Flagler, where Amy Powell works in the emergency room, also came together in support of Kase. Workers pooled money, Amy Powell said, then hand-delivered a stack of checks and cards to Ken Powell during lunch at Sonny’s.
“They knew where to find him,” Amy Powell said with a laugh.
In three to four weeks, Kase will undergo a spinal tap and surgical placement of a chemotherapy port. Then, he’ll have what Amy Powell describes as “very intense chemo” for 10 weeks. Then it will rotate, a few weeks on, a few off, for at least a year.
She said treatments could continue for the rest of his life. But before all that, the family will go to the beach.
“A week of just us — before we start the chemotherapy,” she said of the family’s planned trip to the Florida Panhandle. No cell phones or BlackBerrys allowed.
Ken Powell crossed his arms and stared into the living room, where his sons wiggled around in front of the television.
“We’d like to get away,” he said. “Let them sort of play in the sand and build some memories together. … With cancer, it’s basically just, you do the best you can, and you hope for the best. I think that’s really the only course of action you have. I don’t anticipate him going anywhere for a long, long time.”
Contact Mike Cavaliere at [email protected].
FOOD FOR THOUGHT
Visit Sonny’s Sept. 28 and 10% of your bill will benefit Kase Powell’s fight against cancer.
CONTRIBUTE TO 'THE KASEMAN'
A website has been created to chronicle Kase’s story as well as advertise his benefit events, which the Powells say have garnered offers of help from strangers all over the world.
“He can’t even walk or talk yet, but Kase has touched people in a way that most can’t,” Amy Powell said.
With most of the fundraising initiatives based in the couple’s hometown of Tallahassee, friends and family of the Powells gather weekly for organizational meetings. So far, they’ve put together a foundation, organized a golf tournament, a benefit concert, a poker run and a silent auction and dinner.
The Powells also have a family friend who plays for the Atlanta Braves, David Ross, who has been seeking help within Major League Baseball. Already, Chipper Jones, of the Braves, and Buster Posey, of the San Francisco Giants, have agreed to donate.
For more on Kase Powell, or to donate, visit www.LittleKaseMan.net.
