He's also campaigning to persuade pediatricians nationwide to include dilated-pupil examinations as part of newborn and well-baby checkups; it's the only way to diagnose and treat retinoblastoma while children's lives and sight can be saved.

Checking a baby's eyes is a simple, inexpensive procedure — the only cost is a $30 bottle of eye drops that should last a pediatrician for a moth and a half — but many doctors are erroneously convinced that it would be too complicated and time-consuming to dilate the eyes of every baby they see at least once, Murphree said.

"You can see why they feel that way when you realize that most pediatricians will see a tumor like this only once in a 30-year career," said Murphree.

But Murphree and researchers at Children's Hospital, who have pioneered eye-cancer treatment for the past dozen years, see 300 to 400 young patients a year with retinoblastoma, a cancer that's caused by a single missing gene on chromosome 13, one of the 23 pairs of chromosomes that make up the retina's 3 million cells.

viscous interior. Of children diagnosed with retinoblastoma, 60 percent have tumors in only one eye. Forty percent have tumors in both eyes, and 25 percent of those children lose both eyes.

In 7,000 of the 8,000 children worldwide diagnosed with the disease every year, the cancer spreads outside the eye, affecting the brain. Those are the children who die.

Children's Hospital doctors save more than 98 percent of the new retinoblastoma patients they see each year by administering doses of chemotherapy to shrink the tumors, then zapping the remaining tumor with a laser beam.

"We don't always save the eye,' but we usually save the patient, Murphree said.

For a parent, a diagnosis of retinoblastoma is a shock.

"The idea of babies and cancer just doesn't mix," said Ashford, whose daughter was diagnosed when she was just short of 4 months old. He and his wife, Christina, thought Emma had a lazy eye; their pediatrician referred them to a pediatric ophthalmologist.

"He took one look and said, `She has tumors in her eyes....They're malignant; they're always malignant.' "

As devasted as the Ashford were by the diagnosis, they were thankful to have caught the disease early.

"Most of the time, they don't get children (diagnoses) until they're 13, 15, 18 months....and by the time they come in, the tumors are just blossoming in their eyes. They have to take the eyes out and try to save their lives."

After Emma had begun undergoing chemotherapy, Ashford was looking through photos taken of the family for their 1997 Christmas cards. And in Emma's eyes, he could see the telltale white pupils.

"It was just the scariest thing. You realize you're looking at tumors."

The Ashfords have joined with the Tylos and director Tim Zinneman (A Small Circle of Friends, 1980, Impulse, 1984) and his wife, who also have a children who was born with retinoblastoma, to organize the upcoming benefit.

"Someday when Emma grows up, we'll be able to tell her, 'Because you had this, many children will have sight and will live,' Ashford said.

Rough on Parents

Learning that their child's life will likely be spared, parents heave a sigh of relief, Murphree said. But when they realize that to save that life, one or both eyes must be removed, a new wave of panic sets in. Their child will not only be blind, but will be disfigured.

Murphree explains to frightened parents that the interior of their child's eye will be replaced by an inert plastic implant, which will be sewn in place permanently and covered by a thick contact lens-like prosthesis with the color of the pupil matched to that in the remaining eye. The lens, he tells them, will be replaced as the child grows.

It's a difficult concept to grasp — until the parents meet with second-grader Amy Drummond. She whips of her glasses and goes nose-to nose with kids and their parents.

"I let them look at my eyes and see what their child is going to look like," Amy said, "I've had lots of people look at my eyes, and only one's been able to tell which one's mine and which one's fake."

Amy was 21 months when she lost her eye; her prosthetic lens was hand-painted to match her left eye, which is brownish-green.

"Sometimes I forget about it and I feel like I have two eyes," said Amy, who attends ballet and gymnastic classes, swims and goes bike riding just like any other little girl. The only problems she experiences are a lack of depth perception (that's resulted in her overshooting the glass when pouring milk) and a lack of peripheral vision on her right side.

"There have been near-accidents on the playground because she can't see people coming at her from that side," her mom said.

Fifteen-year-old Tyler Dumm of Carpinteria, who lost both eyes to retinoblastoma when he was 2 1/2 and his right leg from the knee down to bone cancer when he was 10, also offers peer talks.

"Not being able to see doesn't bother me a whole lot, " said Tyler, who — with the help of his friends — bodysurfs, boogie boards, skate-boards, rides horses, throws the shot and the discus on the Carpinteria High School track team, and plays trumpet and keyboard in a band. In his honors classes, where he takes notes in Braille and on a special computer, a single B-plus marred his record of all A's this year. His future includes college, possibly with a career ahead as a musician — or maybe a marine biologist.

Which just goes to show that as terrible as retinoblastoma is, it's not the end of the world for a child, say Amy and Tyler's mothers.

Sue Dumm said when she learned her son would be blind, she was worried— until she went to the Institute for Blind Children at Children's Hospital, to meet other blind youngsters.

"I wanted to know what we were going to be faced with," she said. "The kids were happy; they were playing, and that made me feel like I could handle it."

["We don't always save the eye, but we usually save the patient," says
Dr. A. Linn Murphree, one of 20 retinoblastoma surgeons worldwide.]