Long before the case of Parker Jensen became a media event, it was a story of a mom and dad and their questions about mainstream medicine.
After doctors told Daren and Barbara Jensen their son had a rare form of bone cancer known as Ewing's sarcoma, they asked, are you sure? Where was the proof? How often had doctors treated this disease? Could the family get a second opinion?
And about treatment: Was chemotherapy the only option? Or is there something with less toxic and potentially harmful side effects? Something more holistic in approach?
In the absence of answers they felt were reliable, the family delayed following the course of treatment set out by Primary Children's Medical Center and began doing research of their own.
In the weeks that have followed the state's attempt to place Parker in state custody, the 12-year-old has become the poster child for a looming battle over parental rights. But his case also reflects a latent anxiety among a growing number of Americans about conventional medicine — and their willingness to try anything from magnets to wheat grass to cure their cancers.
Americans are taking the alternative route to solving a range of health-care problems with increasing frequency and spending an estimated $40 billion doing it.
The efficacy of many such therapies is still hotly debated, but both the U.S. Food and Drug Administration and the National Institutes of Health have offices of alternative medicine and conduct hundreds of millions of dollars worth of clinical health trials annually.
Confusion over the details of the Jensen case has fueled public angst. Citing privacy laws, Primary Children's and the laboratories that did Parker's pathology tests have declined requests for specifics. As a result, said Primary Children's spokesperson Bonnie Midget, media reports have contained inaccuracies.
Regardless, a flurry of e-mail and telephone calls to the Deseret Morning News expressed support for the Jensens' rights as parents to make medical choices for their offspring. Readers have also been critical of a medical establishment with a tendency to be "arrogant" and to "bully" vulnerable patients into treatments. Many also said they place their confidence in homeopathic remedies and want the right to explore those options, no matter what the illness.
Parker's story, which has received national attention, began without much fanfare with a small growth noticed last October on the floor of his mouth. According to the Jensens, Parker's dentist said it was a clogged saliva duct. When it hadn't disappeared after six months, the dentist referred them to an oral surgeon, who removed the nodule and sent it to the Laboratory Corporation of America in Kent, Wash.
After reviewing the lab work, Dr. Cheryl Coffin, chief of pathology at Primary Children's, confirmed that the tumor was Ewing's sarcoma, an aggressive cancer generally found in the bone but occasionally in soft tissue.
The Jensens have claimed that the second opinion they sought from Los Angeles Children's Hospital about Parker's diagnosis was simply a "rubber stamp" of Primary Children's original diagnosis. They also claim that subsequent tests conducted on Parker were "negative" and that Primary Children's is only assuming that their son has cancer, based on "micrometastatic cancer" that can't actually be tested for. Parker, they point out, looks and feels healthy — and seems so in recent photographs that show him riding a motorbike and jumping on a trampoline with his siblings and cousins.
Chemotherapy, they argue, is too toxic to be prescribed for a child who might not really have cancer.
Doctors have a different take. Although physicians associated with the case won't talk on or off the record, a Guardian Ad Litem report issued last week said three laboratories had tested tissue sample, and each had confirmed the Ewing's sarcoma diagnosis.
"If it's been looked at by two different labs, I'd be pretty comfortable with the diagnosis," said Dr. William H. Meyer, a pediatric oncologist at the University of Oklahoma Health Sciences Center.
Whenever Ewing's is diagnosed, said Meyer, chemo is the required response.
Yes, Parker may look healthy. Yes, micrometastatic cancer cells are impossible to test for. But years of caring for children with Ewing's — most patients are between 4 and 20 years old — have shown that chemotherapy is the only thing that works, said Dr. Joe Simone, a pediatric oncologist who was former clinical director at the Huntsman Cancer Institute and now runs a private consulting service in Atlanta.
Micrometastatic cancer, he said, is like a barrel of water into which you've dropped a tiny blob of oil. "Over time, the droplets will disperse. Little tiny bits of it mix with the water, and you can't see it with the naked eye." With Ewing's, the cancer may show up as a tumor, but tiny cancerous cells may also have infiltrated between normal cells.
For years, surgeons simply removed the Ewing's tumor. "They would go in and say, 'I got it,' and the kid always died," said Simone. So doctors began adding localized radiation. "But the recurrences still happened at about the same rate." In the early 1970s, doctors began trying chemotherapy after surgery.
The treatment isn't perfect, said Simone, but "you've got a very good chance (for survival)." Survival rates are about 70 percent (although in some of these cases the disease recurs 20 years later).
"They're playing with fire, these people," Simone said about the Jensens. "Every cancer is worse if it comes back. It's much harder to cure. It doesn't mean it's impossible, if it's caught in a very early relapse phase. It's maybe half (the cure rate) what it was before."
The Jensens have said they wanted to explore alternative therapies for their son. They had made an appointment at the controversial Burzynski Clinic in Houston — known for its antineoplaston therapy to treat cancer — but were unable to get an evaluation there after the state of Utah intervened.
The Cancer Cure Foundation of Thousand Oaks, Calif., lists more than 50 alternative therapies on its Web site but stresses that it "does not recommend the abandonment of conventional therapies in favor of alternative therapies."
Dr. Susan Silberstein, executive director of Center for Advancement in Cancer Education in Wynnewood, Pa., said she is sometimes contacted by families who balk at chemotherapy for their children.
"It's such a legal hot potato that what we've suggested is that they at least explore complementary therapy," Silberstein said. Complementary therapy, as opposed to "alternative" therapy, is the combining of conventional (in this case chemotherapy) and non-conventional therapies. These would include botanicals, vitamins, homeopathic medicine and play therapy, with the goal of enhancing the child's immune system, minimizing side effects and preventing recurrence.
"We've had some excellent successes (with alternative therapies), but 99 percent of the time we can't do it without also using conventional therapies" because of the legal ramifications, she said.
The goal, she said, is to avoid an antagonistic situation between families and medical professionals. So she encourages some families to do at least an initial round of chemo. For those who refuse, she encourages them to write a "disclaimer letter" to their doctor and hospital saying that the family respects their recommendation of chemotherapy but "at this time we accept full responsibility for a decision to work with another credentialed physician." This would be a medical doctor who also believes in alternative therapies, although she said "it's not easy to find people like that."
"We coach them how to write the letters. But we explain that they're really playing with fire," because they might still have the child removed from their custody, said Silberstein.
There are medical doctors in Utah who use complementary therapies to treat cancer, but it's not easy to get them to talk on or off the record for fear of reprisals from the medical community. Conventional medicine views many alternative therapies as unproven, not backed up by double-blind studies. Doctors who are willing to try some alternative approaches point out, in turn, that there are no deep-pocket pharmaceutical companies to fund that kind of research.
That's not to say that hospitals don't allow some unconventional approaches. Erin Jordan, whose son Zack died of cancer, said that Primary Children's lets parents supplement their children's diets with herbs like echinacea or use therapies such as guided imagery while they're going through chemotherapy. The only exception is when those complementary approaches might interfere — for example, vitamin B can weaken the effectiveness of one type of chemo.
"I've never met a doctor at Primary Children's that wouldn't work with you to treat your child," said Jordan, who is executive director of Candlelighters for Childhood Cancer, a support group for families who have children with cancer. Jordan took her son off chemotherapy after he relapsed for the third time, had 40 tumors in his body and was given a 10 percent chance for survival.
"Chemotherapy is not a walk in the park, but it's what we have to offer, and our treatments are getting better," she said.
David Hargraves agrees. His son Sebastian was diagnosed with Ewing's sarcoma in 1999 and went through a lengthy course of chemotherapy similar to the 49-week one Primary Children's recommended for Parker Jensen. Sebastian is now in remission.
"At some point I don't understand the Jensens," Hargraves said. "I don't understand how anyone could wait and prolong something that could be getting worse."
E-mail: jarvik@desnews.com; jdobner@desnews.com