Ben Underwood starts controversial treatment

Ben Underwood fought his cancer with chemotherapy, radiation and prayer, but retinoblastoma has apparently returned.

This time the remarkable blind teenager, who gained worldwide fame after The Bee published an article about his ability to "see" with sound, is pursuing a more controversial path to recovery. Ben is swallowing dietary supplements that, while not scientifically proven against cancer, he and his mother believe offer him hope without causing toxic side effects.

"The chemotherapy almost killed him, literally," said Aquanetta Gordon, Ben's mother. "We're not going to do any more of it. We're just going to live our lives. We're just going to live."

The glyconutrient supplements that Ben is taking cost about $600 a month, she said, and are not covered by insurance. Friends and family members have scheduled an event Saturday to raise money to pay for the treatments.

For details, go to www.helpben.com.

Glyconutrients are a group of sugars that are used by cells in the body to make certain proteins. In recent years, various combinations of these sugars have been sold as dietary supplements that some believe can prevent and treat cancer and other diseases.

But according to the American Cancer Society, "available scientific evidence does not support claims" that the capsules "can prevent, treat or cure cancer" or any other ailment.

Ben's doctor, Kaiser Permanente pediatric oncologist Kent Jolly, says he is "very understanding" of patients who choose alternative therapies when conventional ones fail.

"But, in general, these therapies have little or no scientifically recognized benefit," he said.

Because they are not fully regulated, he said, they may contain harmful contaminants or undisclosed ingredients.

"We certainly understand a family's desire to seek out such alternatives," Jolly said. "But, regrettably, in some cases these products prey on the desperate and uninformed."

Norm Schriever, one of the organizers of the Saturday fundraiser, admits he knows next to nothing about glyconutrients.

"But Ben is so amazing, such an inspiration, that I knew I wanted to help him and his mother with this."

Ben has been fighting cancer since he was just 2 years old and developed retinoblastoma, a malignant tumor that grows on the retina. By the time he was 3, he had lost both eyes.

Within a few years he began teaching himself echolocation, a navigational skill used by bats and dolphins but rarely documented in humans. By clicking his tongue and creating sound waves that bounce off objects, he learned to identify obstacles and get around safely.

Now 16, Ben attends mainstream classes at Sheldon High School, plays basketball, practices karate, skates and rides a bike through his Elk Grove neighborhood, and excels at video games. He refuses to use a white cane identifying him as blind.

During the past two years he has been featured on national television, including Oprah Winfrey's and Ellen DeGeneres' shows, in newspaper and magazine articles, and is an Internet celebrity. He also has become a highly sought public speaker and has traveled all over the world to tell his story.

Ben's cancer was in check until last year, when he suffered a recurrence. Intensive chemotherapy and radiation treatments, which weakened and sickened him, have failed to contain the tumor, according to recent tests.

"The tumor does appear to be growing back," said Jolly, the pediatric oncologist.

If further testing confirms the diagnosis, Ben may be a candidate for a revolutionary treatment known as gamma knife surgery, which attacks tumors using a precision dose of radiation. The therapy would represent "his last chance" at beating his cancer, at least through conventional treatment, his mother said.

In the meantime, "we are doubling up on the glyconutrients" and hoping for the best, she said.

Ben and his mother are scheduled to travel later this month to a conference in Amsterdam, the Netherlands, where he will deliver an inspirational speech, said Gordon.

"Whatever happens, Ben is going to be OK," she said. "We all have a purpose, and he has found his purpose. He is totally at peace."

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