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Gayle Koochin says she noticed her son's foot move this week as she rubbed it tenderly, even as doctors claimed the boy was dead.
Doctors at Primary Children's Medical Center say 6-year-old Jesse's life is over and it's time to put the boy who struggled so valiantly with brain cancer to rest.
But on Thursday, Gayle and Steve Koochin were frantically trying to make arrangements to take Jesse to the family's temporary Salt Lake City home, where his care will be supervised by Gary Holland, Hospice for Utah's medical director, and a hospice nurse.
He could be moved as soon as today.
"Hopefully, he will be under our hospice care at their home," said Holland, who is trained to operate a ventilator in private residences. "We hope for the best and will prepare for the worst."
Jesse's parents insist they are not in denial about their son's condition, and want to again try alternative treatment they say saved his life in June at a Tijuana, Mexico, clinic. The dilemma was temporarily decided Wednesday when a judge barred the hospital from removing Jesse from life support until a hearing scheduled for Oct. 27. Doctors expect his heart to stop beating before then.
The Koochins "are folks who have had difficulty accepting the incurable nature of this child's condition," said Jeff Botkin, a pediatrician and a member of Primary Children's Division of Medical Ethics. "Everybody hoped along with them that something extraordinary would happen, a miracle if you want to say. . . . But people do not wake from the dead."
Doctors determined Jesse was brain-dead through separate examinations Monday and Tuesday by two physicians.
The Koochins brought the Florida boy to Utah about a month ago, seeking help from several alternative medicine practitioners. But he was taken to Primary Children's on Sept. 15, when he became so ill he had trouble breathing on his own.
The Koochins point out they tried conventional treatment for Jesse's brain cancer, which was diagnosed in April. They first sought alternative treatment in Georgia, but when Jesse became severely ill, they agreed to radiation. He was then too ill to survive chemotherapy, they say, so they went to an alternative clinic in Mexico.
"Chemotherapy and radiation do work for some candidates, but not for Jesse because he was too far advanced," Gayle Koochin said.
The Mexican techniques his parents credit for his temporarily improved health are relatively unknown. They included injecting him with live cells from the embryo of a blue shark and placing an ointment on his head, which his father described as killing and pulling out the tumors.
Nonsense, says Stephen Barrett, a retired Pennsylvania psychiatrist who runs a Web site - http://www.quackwatch.org - where he alerts the public about questionable medical practices.
Many of the tactics used by the Mexico clinic and others that claim to holistically heal cancer patients come from William Kelly, a Texas dentist who lost his dental license in 1976 after treating and diagnosing cancer in patients in his office, Barrett said.
Kelly wrote a book called Cancer: Curing the Incurable without Surgery, Chemotherapy or Radiation. Barrett objects: "His main ideas are completely nuts."
But Gayle Koochin defends Kelly.
"Everybody has a past," she said. "People in the holistic fringe have no protection. They're going to be attacked even though they help people who are sent home to die."
Hugo Rodier, a doctor who practices integrative health in Draper, partially agrees with Koochin, but warns some unscrupulous people will take advantage of desperate parents and patients. He believes people should use herbs and vitamins, but also incorporate standard care and pharmaceuticals.
"Medicine needs to be integrative," he said. "[But] you do not touch these therapies unless you have good evidence. A good rule of thumb is don't even go there if it hasn't been validated in several journals."
Rodier said he is unaware of insulin potentiation therapy, billed as a gentler chemotherapy, which the Koochins said they hoped to obtain in Utah for Jesse.
Steve Koochin took Jesse to the Modern Health Clinic in Bountiful, which offers other treatments, but the clinic didn't treat him because his condition was too severe.
Botkin said parents and the public in general need to seriously weigh the merits of alternative medicine if other proven therapies are available.
"When folks have tried standard ways and they don't work, I think that's OK," he said. "I have concerns when folks use alternatives that haven't been adequately effective and pass up other treatments that could be beneficial."
The Utah Division of Child and Family Services has no plan to step into the dispute, which is unlike the case of Parker Jensen, a Utah boy whose cancer diagnosis also caused controversy.
The division tried to force chemotherapy on the then-12-year-old, but his parents fought back and won.
Carol Sisco, a spokeswoman for the division, said the two cases are starkly different.
With Jesse "it is not a situation where a family is withholding a treatment that could save their child's life," Sisco said. "It's one where they're making a difficult decision, and they've done what they need to do to seek an injunction. They don't really need us to help them with that. And we have not received any reports that he's being neglected or abused."
Even with the Koochins' highly publicized battle with Primary Children's, the parents have no regrets and disregard critics of their medical decisions.
Before Jesse was diagnosed with cancer, the couple, Jesse and their three other children - ages 18, 15 and 10 - lived what they say was a normal life in Clearwater, Fla. Gayle worked in graphic arts and Steve had a job as an engineer. They have had to quit their jobs and rely upon family for financial and moral help and their church members - they are Scientologists - for support.
"We did the right thing," Steve Koochin said. "I would not sleep good at night if I didn't do the right thing with my son."