Thursday, November 30, 2006
During her short life, 3-year-old Ottawa resident Chloe Robinson developed a love for knock-knock jokes. She told them to anyone who would listen: doctors, nurses, family members. Her favorite:
Don’t cry, it’s just a joke.
“We joked that she knew every knock-knock joke that you could ever know,” said her mother, Chrissy. “She was very smart for being locked up in the hospital room.”
Chloe died earlier this month at Children’s Mercy Hospital in Kansas City, Mo., after a lifelong battle with severe combined immunodeficiency, or SCID. This weekend, the Ottawa elementary school where Chloe’s father works is holding a silent auction fundraiser to help the family defray its medical costs, which haven’t yet been tallied.
“Anyone that’s seen pictures of Chloe or heard about her struggle … you couldn’t help but fall in love with her,” said Tori Wilson, a technology aide at Garfield Elementary School in Ottawa. “That same spirit is alive in Josh and Chrissy too … They’re part of us.”’
The auction will be from 9 a.m. to 4 p.m. Saturday at the elementary school. Items donated include autographed Kansas City Chiefs memorabilia and Kansas University men’s basketball tickets from coach Bill Self’s personal allotment, Wilson said.
If there’s any money left over from paying bills, the family plans to use it to help start a foundation in their daughter’s memory that will help other families in a similar situation.
“Rather than continue to ask why, we’re starting to decide what we can do to make sure that, even though she died early, her life was still meaningful,” said her father, Josh, a first-grade teacher.
Chloe was born in August 2003 in Lawrence. From birth, she had chronic gastrointestinal problems that were later attributed to her immune system.
She spent only a few weeks of her life in Ottawa. The rest of her time was spent under medical care in Kansas City, Nebraska, Boston, North Carolina and finally in Cincinnati, where she received a bone-marrow transplant early this year aimed at replacing T-cells in her body.
“On her transplant day, we threw a big tea party,” Josh Robinson said. “Since then, tea parties were her favorite thing to do.”
She had a way of making adults laugh, her parents said. They said that once, when she went into surgery, a hospital employee came out laughing because Chloe had been telling knock-knock jokes up until the point that she went under anesthesia.
After her bone-marrow transplant, her immune system improved. But in August of this year, her liver began to fail.
For the last weeks of her life, she left the hospital where she’d been staying in Cincinnati and returned to Children’s Mercy in Kansas City.
“We were basically sent back to Children’s Mercy with the understanding that her liver was going into failure, and we wanted her to be closer to home, wanted her to be able to spend time with her family,” Josh Robinson said. “I don’t think she knew necessarily that she was dying, but we got the sense that she knew something wasn’t right.”
Near the end, the decline in her health happened quickly. Even on her last day, when she developed internal bleeding, she had been sitting up in bed, painting, telling jokes and reading books with people, her father said. She died Nov. 11.
“Our greatest fear, knowing that she was dying, was that we were going to have to be the ones to decide to turn something off or stop something. There weren’t any choices. It was that quick,” Josh Robinson said. “She curled up with her mom and went to sleep.”
At her memorial service, the Robinsons had a photo of Chloe with room for visitors to write a knock-knock joke around the edges. They also gave away tea bags with a note that said, “With your next cup of tea, think of Chloe.”
The Robinsons said they’re grateful for the help they’ve received from the community.
“It’s been amazing,” Josh Robinson said.