In February of last year, little Carter Kettner was sleeping — a lot.
Some days he’d be out for 20 hours. When bath time came around, he wasn’t able to sit up.
Doctors diagnosed a malignant brain tumor in the 5-year-old. Carter called it the cookie inside his head.
By November, he lost the ability to walk. Last month, he could no longer hug his parents.
Carter, 6, whose 15-month battle with cancer moved a community, died Wednesday, May 12, at his home in Huntley, his father, Joe Kettner said.
“Neurologically, his body couldn’t carry the tumor anymore,” Kettner said. “His smile went away.”
Doctors couldn’t operate on the massive, complex tumor because it was so tightly fused to healthy brain tissue, Kettner said.
Carter’s family moved to Memphis for radiation treatment at St. Jude Children’s Research Hospital in March 2009. After 33 treatments in three months, they returned to Huntley. Two weeks later, doctors found the cancer had spread to his spine.
“At that point, we knew we were losing this battle,” Kettner said. “So we had to spend every single minute with him.”
Carter and his dad, along with mom, Cinnamon, and brother Bowen, 3, went to Disney World twice. They traveled to New York to see “Mary Poppins” on Broadway. On a trip to NASA’s Johnson Space Center in Houston, Carter was patched through to the International Space Station and sucked on a lollipop as he asked an astronaut if he could see Mars from up there.
Carter — who loved ’80s movies, who threw pennies in fountains and wished for everyone’s dreams to come true, and who spent hours watching penguins waddle around at the zoo — became a rock star in his community.
Bartlett police swore him in as honorary officer. Huntley declared Aug. 7, 2009, Carter Kettner Day and renamed the street he lived on Carter Kettner Drive. Later that month, Carter threw the first pitch at a Cubs game.
“The dreams kept piling up and up,” his father said. “Even though he was losing the battle, he didn’t know.”
Carter dreamed for it to rain gumballs but was told it was impossible. Then a candy shop in Skokie donated 5,000 gumballs. Friends and family dropped them from the roof, and it rained gumballs.
None of it would have been possible without the family, friends and strangers who held more than a dozen fundraisers and were dubbed Carter’s Crew.
“We’re so blessed to be able to have such a strong network around us,” said Joe Kettner.
Carter went to two months of kindergarten at Mackeben Elementary School in Algonquin, catching a yellow school bus just like he always wanted.
He spent his last three weeks at home, the last nine days of which he lay unconscious. His parents brought him into their bedroom, sang the same “Curious George” song that helped him go to sleep during his radiation treatments and told him it was OK to go.
In his last hours, his parents lay silent by his side in their bedroom lit only by candlelight. He wore his favorite E.T. shirt and had his trusted stuffed companions — a baby pig given to him when he was born and his beloved St. Jude bunny — on the bed with him.
His parents took turns hugging him.
“To have to physically take your son’s hands and wrap them around somebody is a very difficult thing to do,” his father said. “But it made it very special to have one last hug from him while he was still breathing.”
His parents continued to hold him, watching his breaths.
When he took his last, they watched for one more.
“We waited and waited and waited, and he was done,” his father said.
He is also survived by his grandparents Carol and Joe Scanio, Jim and Joan Kettner, and Steve and Barbara Tyler.
A service will be held from 4 to 8 p.m. Sunday in DeFiore-Jorgensen Funeral Home, 10763 Dundee Road, Huntley, followed by a mass at 10:30 a.m. Monday in St. Mary Catholic Church, 10307 Dundee Road, also in Huntley.