Chandler High School assistant principal Chris Knutsen reached the cap of his medical insurance policy last week and now must wait in limbo as his daughter’s life wanes.
Haley Knutsen, 9, battled leukemia into remission three months ago after seven years of chemotherapy, radiation treatment and bone marrow and blood transplants. But now she has a ravaged liver and needs a new one soon.
Next week might be too late. "It’s killing me because we’re just waiting," her father said. "She’s in a lot of pain, she’s getting sick and needs a liver transplant."
But the procedure costs money.
The Gilbert family applied for emergency state coverage from the Arizona Health Care Cost Containment System, and help might come.
AHCCCS administrators told the Knutsens no on Friday, then yes, then maybe and then probably. Wednesday night the Knutsens learned that AHCCCS will pay for their daughter’s evaluations in San Diego.
But coverage for the liver transplant remained uncertain.
"We can find the money somewhere," Chris Knutsen said Wednesday from his daughter’s hospital room at University Medical Center in Tucson. "Heck, we’ll sell the house. I want to get her going on this before we lose her."
Haley will fly to San Diego today in a helicopter with her mom, Angie, and her dad will follow in the family car. Both parents stand ready to donate portions of their livers — depending on who doctors determine would make a better match.
Back in Arizona, the Chandler school community and Gilbert neighbors have been scrambling to raise money in $5 and $10 increments. If AHCCCS will not cover the transplant, the family will need to come up with $300,000 to $500,000 on their own.
Chandler High students will collect cash during a school luau on Friday and wash cars next week. They also have rallied with a "Penny War" during their homeroom and lunch periods.
Professional entertainers also will perform Monday night in a benefit concert at the Chandler Center for the Arts.
Chandler parent Kelli Dickerson has organized fundraisers throughout the year at the Bashas’ grocery store where she works as a scan coordinator. So far she has raised about $10,000 to help the Knutsen family.
"Haley is just so close to my heart," said Dickerson, who first met Haley three years ago when Haley’s mom was her daughter’s sixth-grade teacher at Humphrey Elementary School. "She is the sweetest little girl."
Chris Knutsen lamented Wednesday that money has become his main worry — even as his daughter struggles in pain.
"It’s reality," he said. "And it hit us right in the face on Friday afternoon."
That’s when he and his wife found out that a Houston hospital had backed out of a scheduled transplant surgery after hospital administrators learned the Knutsen’s $1.5 million insurance policy had run dry. That surgery had been scheduled for Monday.
Another hospital in Minnesota has also backed out of doing the surgery. Now the Knutsens have turned to California Children’s Hospital because the facility works closely with AHCCCS.
"We don’t determine where we go," Chris Knutsen said. "It’s totally up to the insurance company."
People who know Haley said the girl has captured their hearts.
"She always has a smile on her face," Chris Knutsen said. "She’s been sick her whole life but she’s just a joy."
Haley loves music, the outdoors and catching bugs.
Chandler resident Dawn Zuber said her children play soccer with Haley’s older sister, Kylene, and younger brother, Jayce.
"We’re all better people from knowing them," Zuber said. "It’s kind of made you not sweat the small stuff and appreciate your kids."
How to help
Chandler students and businesses have planned several fund-raisers.
What: Bake sale
When: All day Friday
Where: Pima Medical Building, 941 S. Dobson Road, Mesa
What: Free benefit concert. Make donations to Chandler Education Foundation When: 7 p.m. Monday Where: Chandler Center for the Arts, 350 N. Arizona Ave.
What: Student concert, car show When: Aug. 19 (time to be announced) Where: Chandler High School, 350 N. Arizona Ave.
What: Donation jars will be available during meet-the-teacher event at Zuni Elementary School
When: 8 a.m. and 5 p.m. Aug. 19
Where: 9181 E. Redfield Road, Scottsdale
What: Student carwash When: 6 a.m. to 2 p.m. Aug. 20 Where: Chandler High School
What: Bashas’ supermarket, McQueen and Pecos roads, is selling special wristbands and car magnets When: Ongoing
Mail checks, payable to the Hope for Haley Fund, to the Chandler Education Foundation, 1525 W. Frye Road, Chandler, AZ 85224. Or visit any Bank One branch and make donations. To also make donations or to get updates on Haley’s condition, visit