Ken Powell and his wife, Amy, were on the road back home to Tallahassee. In the backseat, 4-year-old Knox was chattering, but the seat next to him was empty.
Kase, Knox’s twin brother, born just three minutes after Knox, had died two days prior, at 5:48 a.m. Wednesday, March 5, after a more than two-year struggle with a rare brain tumor.
But his family sounded at peace. Or maybe it was shock.
“It really hurt us when he left us,” Ken Powell said. “For it to happen so quickly.”
Up until the Sunday preceding his death, Kase had been his usual happy self, playing in the yard and on the swing outside with his parents, going on a bike ride. He even went to school with his brother on Monday, at Christ the King Lutheran Church, where he had been excelling. He was attending class five days a week. Whereas he used to be timid around his peers, now he was interacting with them.
He was a normal kid.
“But the illness was progressing at that time,” Powell said. “But you’d never know. His personality and his spirit, it was bigger and brighter than ever.”
The Monday before his death, Kase came home from school with a stomach bug. Pair that with the new meds he had been taking, and the chemo that did such damage to his immune system, and soon he got pneumonia.
“That sort of tipped him over really, really quick,” his father said. “His body had been through so much. For lack of a better term, it was the perfect storm. He was tired.”
Powell remembers a nine-month period of stability, though. The tumors in Kase’s brain weren’t growing. “He was really taking off, developmentally and emotionally.” But soon, the masses started swelling again — not extreme at first, but enough.
The Powells will attend a 2 p.m. Tuesday service for their son in Tallahassee. But a second, public service, 1 p.m. Thursday, March 13, at Christ the King, is also planned. After all, Palm Coast may not be the family’s hometown, but its residents have rallied behind Kase since the very beginning — with charity drives and online support groups.
“We weren’t originally from Palm Coast, but it has wrapped its arms around us and our family,” Powell said. “We’ll never be able to repay everybody for all the kind things they’ve helped us with over the years.”
But they are going to try. The family intends to start scholarships and foundations, to “make sure Kase’s legacy lives on.” They’re also going to donate Kase’s brain to science — “to at least shed some knowledge on the situation ... help save another child and family some heartache.”
Although Kase wasn’t diagnosed with pilomyxoid astrocytoma until almost two years after his birth, Powell says his son’s impact on people started as soon as he entered the world, at only 2 pounds, 4 ounces.
“He’s so much more than just a kid with cancer,” he said. “He was so small when he was born ... and people just marveled. He just fought. He was always a fighter.”
And that touched people somehow, he added. Kase didn’t have to do much to make others smile — only live.
“Just him — his glowing smile, his blue eyes — he had a way of uplifting people by just being himself,” Powell said. “We knew that Kase would probably leave us at some point in time, but this is not how anybody envisioned it. He may be gone physically, but I think he’ll be remembered for a long, long time. ... He accomplished more than a lot of people ever do in their lives. ... He inspired others.”
Kase Powell was born Dec. 11, 2009.