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3 institutions diagnosed boy with sarcoma, Utah office says

SHARE 3 institutions diagnosed boy with sarcoma, Utah office says

POCATELLO — A four-page statement released by the Office of the Guardian Ad Litem Monday says that three different medical institutions diagnosed Parker Jensen with Ewing's sarcoma — all of which recommended chemotherapy as the only treatment option that might save the 12-year-old's life.

The Jensens have "not come forward with a single piece of medical evidence" that shows the diagnosis is incorrect or have offered viable treatment options, the statement reads.

The guardian ad litem is a state agency that bears the responsibility of ensuring that the rights of children are protected in court.

"I stand by everything in the statement," said Mollie McDonald, an attorney in the office assigned to the Jensens' case who signed the document. Frustrated by what she called erroneous media reports, McDonald said it was she who asked the juvenile court to lift a gag order imposed on the case. That order was lifted late Friday, she said.

But Daren and Barbara Jensen said that the information in the guardian ad litem statement is erroneous. The Sandy couple disputes an initial cancer diagnosis from Primary Children's Medical Center.

The hospital could only say that Ewing's sarcoma was "suspected" and that doctors were only sure that Parker had "micrometastatic disease," which indicates that some undetectable cancer cells were present in his system, Daren and Barbara Jensen said.

"We wanted more tests and more information before making a decision," Barbara Jensen said.

The Jensens also said that a second opinion from the Los Angeles Children's Hospital was a "rubber stamp" because the data sent from Primary Children's was incomplete.

Daren Jensen showed the Deseret Morning News a copy of a July 10 court document obtained by his attorney that compelled Primary Children's to send tissue samples and other test results to the L.A. hospital. Jensen said that was obtained because the hospital had refused a verbal request. Only July 21, when the Jensens arrived in Los Angeles, the doctor there said the information had not been made available.

The Jensens said they were unaware of any test results from the Los Angeles hospital or from the University of Washington Medical Center Pathology Department. They questioned why the state of Utah would have medical information about their son that they do not have.

"I consider that malpractice," Daren Jensen said.

The Jensens' disagreement with doctors led Primary Children's to notify the Utah Division of Child and Family Services (DCFS) and resulted in juvenile court proceedings, which ultimately landed Parker in state custody Aug. 8. Daren and Barbara Jensen have since been charged with kidnapping by Salt Lake County prosecutors because they were out of state at the time of that court order and have failed to return to Utah. Daren Jensen was arrested in Idaho and now is fighting extradition to Utah.

Gov. Mike Leavitt's office became involved in the case late last week, and state officials are now engaged in negotiations with the Jensens in an effort to resolve the matter. Neither side has talked about the details of a possible deal, but the Associated Press reported Monday that it would likely involve dropping the kidnapping charge and returning Parker to the custody of his parents.

According to the guardian ad litem statement, doctors in both Los Angeles and Washington concurred with Primary Children's diagnosis of Ewing's sarcoma, a rare bone cancer for which chemotherapy is the recommended treatment. Doctors met with the Jensens on four occasions before reporting the couple to DCFS, and the Jensens refused treatment each time, the guardian ad litem statement said.

Dr. David Tishler from Los Angeles testified by phone in a court hearing that chemotherapy was needed. The Jensens say this is the same doctor who told them he could not evaluate their son.

McDonald said she is aware of medical information about Parker because there were references to that information in various pieces of correspondence and from Tishler's phone testimony in court.

But "this has never been about not getting treatment," Barbara Jensen said. The couple said subsequent test results, including bone scans and MRIs, showed no sign of cancer and they were hesitant to launch Parker into 49 weeks of chemotherapy if it wasn't warranted.

"And if those other hospitals ran tests that we don't have and that we don't know about, is that a second opinion?" Barbara Jensen asked.

McDonald said she understood that the additional tests would only detect tumors already present in Parker's body, not the microscopic cells about which state experts and doctors from Los Angeles and Washington expressed concern.

"This is not a 'might' diagnosis," she said. "I understand that the Jensens feel like (the additional opinions) were contaminated because the other pathologists called Primary Children's to discuss the diagnosis with them."

But the Primary Children's pathologist is considered an international expert in soft tissue sarcoma and is frequently consulted by others, McDonald said.

The guardian ad litem document also states that the Houston-based Burzynski Clinic, which the Jensens had selected, was unacceptable because a state expert, Dr. Karen Albritton of the Huntsman Cancer Institute, said it was not FDA-approved and that the clinical trials the clinic is involved in do not include chemotherapy, something the Jensens allegedly had agreed to in court.

The Jensens have said they were not specifically seeking treatment for Parker at Burzynski, only an independent evaluation of his medical condition.

They also object to the guardian ad litem statement that they have never presented evidence to contradict state experts in court. None of their four court hearings have been evidentiary hearings, only pre-trial hearings, Daren Jensen said. An evidentiary hearing set for Aug. 20, which the guardian ad litem claims the Jensens missed, was canceled once the state took custody of Parker and arrest warrants were issued for Barbara and himself, Daren Jensen added.

The guardian ad litem statement concludes by saying that in previous cases wherse parents refused chemotherapy, the children died, so state policy evolved that compels state intervention. The policy considers diagnosis and proposed treatment, likelihood of treatment success and potential treatment side effects, the statement reads.

It concludes that the guardian ad litem's opinion is that neither doctors nor the courts rushed their decision without regard for the parent's concerns.

"I don't believe (the Jensens) are bad people. I sympathize with them. I feel bad that this is happening," McDonald said. "But the clock is ticking for this kid."

E-MAIL: jdobner@desnews.com