HIDING IN PLAIN SIGHT; CELEBRITY PARENTS CALLING ATTENTION TO RARE INFANT EYE CANCER; EARLY TREATMENT IS KEY.

Byline: Carol Bidwell Daily News Staff Writer

When Amy Drummond was born seven years ago, Kathy Drummond counted her newborn daughter's 10 fingers and 10 toes and breathed a sigh of relief that she was beautiful and healthy.

The new mom wouldn't know for nine more months that her seemingly perfect baby had been born with a potentially fatal disease called retinoblastoma, a fast-growing eye cancer that affects about 1 in 15,000 newborns each year.

When Drummond, a Glendale resident, noticed that Amy's right eye was ``slow'' and the pupil looked milky in low light, she took the baby to her pediatrician. He shined a light in the infant's eyes and pronounced her perfectly healthy.

But, with the doggedness of a mother convinced something was not right, Drummond insisted on a more thorough examination. This time the doctor sat Amy in a darkened room so her pupils would dilate, then took another look.

``He looked inside her eye and saw the tumor,'' Drummond said. ``If I had trusted my doctor the first time, it would have been a horrible thing.''

Horrible indeed.

Worldwide, about 8,000 children a year are diagnosed with retinoblastoma in one or both eyes, said Dr. A. Linn Murphree, director of the Ocular Oncology Service at both Childrens Hospital Los Angeles and University of Southern California School of Medicine, and one of about 20 eye surgeons worldwide who treat children with this condition. About 7,000 of those diagnosed die by age 2, most of them in Third World countries, where they are never treated because of lack of medical facilities or money.

But as serious as this cancer is, few people had ever heard of it until two Los Angeles-area soap opera stars - Hunter Tylo of ``The Bold and the Beautiful'' and Matthew Ashford, formerly of ``General Hospital'' - announced recently that they had children born with the condition.

Tylo's daughter, 6-month-old Katya, has had her right eye removed; chemotherapy continues to try to save her left eye, in which five more tumors were found. Ashford's 1-year-old daughter, Emma, is undergoing chemotherapy that has shrunk tumors in both her eyes.

`Orphan disease'

Murphree, the only surgeon in the Southwest region of the United States who treats large numbers of retinoblastoma patients, calls the eye cancer an ``orphan disease'' because it is relatively rare when compared to other childhood diseases, so few major hospitals or universities have established centers to fight it.

But the doctor and some of his patients are trying to remedy that with the proceeds from an Aug. 21 benefit that will honor TV talk-show host Rosie O'Donnell for her work with children. The money raised will go to expand an eye-cancer research center at Childrens Hospital of Los Angeles.

Murphree, who was recognized as the nation's top surgeon in 1997 by the American College of Surgeons, is also designing a system for doctors around the world to share via the Internet information on eye-cancer cases, including diagnosis and treatment.

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 month 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 Childrens 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.

``It happens at the time of conception or maybe at the first cell division after that,'' Murphree said. ``(Tumors) tend to arise in cells that have not finished differentiating ... A child's retinas aren't formed completely until he's about 2-1/2. The eyes grow and the retina grows. That means there is a window of risk until a child is about 2-1/2.''

Some cases of retinoblastoma are hereditary; others occur spontaneously, with no family history of the disease. Childrens Hospital researchers, armed with $15 million in private grants, have isolated and cloned the retinoblastoma gene. They're now working on a way to replace the defective gene and on new chemotherapy methods.

Early detection

When doctors look inside the eye of a child with retinoblastoma, they see tumors that look like blobs of creamy white floating in the eyeball's 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.

Childrens 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 opthalmologist.

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

As devastated as the Ashfords were by the diagnosis, they were thankful to have caught the disease early.

``Most of the time, they don't get children (diagnosed) until they're 13, 15, 18 months old ... 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 child 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 parents meet with second-grader Amy Drummond. She whips off 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 old when she lost her eye; her prosthetic lens was handpainted to match her left eye, which is a brownish green.

``Sometimes I forget about it and I feel like I have two eyes,'' said Amy, who attends ballet and gymnastics 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 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 pep talks.

``Not being able to see doesn't bother me a whole lot,'' said Tyler, who - with the help of his friends as guides and lookouts - bodysurfs, boogie boards, skateboards, skis, 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 Childrens 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.''

Use camera to check child for eye cancer

It's easy for parents to check their baby's eyes at home for signs of retinoblastoma, said Dr. A. Linn Murphree, Childrens Hospital surgeon who specializes in diagnosing and treating children with eye cancer.

To get a look inside your baby's eyes, put the child in a darkened room for about five minutes to let the pupils dilate. Then, while still in the darkened room, take six to eight flash photos with a Polaroid or a cheap throwaway camera - not an expensive one with an anti-red-eye feature. Wait about one minute between shots to allow the pupils to dilate again.

When the pictures are developed, ``if you see something white in one or both eyes, that means it needs to be checked out,'' Murphree said. ``There's not a 100 percent guarantee they'll find it. But if the tumor's big enough to see, there'll be a white pupil.''

Parents should also look for signs that one or both eyes are crossing; that can mean a tumor is in front of the eye's central vision, so the eye has no reason to stay aligned straight ahead.

Ninety-five percent of eye tumors are discovered by parents who notice one or both problems with their child's eyes, Murphree said.

- Carol Bidwell

THE FACTS

What: ``Miracles,'' a celebrity-studded, black-tie event to raise money to establish an eye-cancer research center at Childrens Hospital named after TV talk show host Rosie O'Donnell.

When: 6 p.m. Aug. 21.

Where: Beverly Hilton Hotel, 9876 Wilshire Blvd., Beverly Hills.

Who: Guest list includes O'Donnell, Richard Dreyfuss, Hal Holbrook, Dixie Carter, Steve Lawrence and Edie Gorme.

Admission: $250 per person, with all proceeds going to research center. Seating is limited. Donations also can be sent to Vistas for Blind Children Inc., Miracles Event, 9903 Santa Monica Blvd., Suite 421, Beverly Hills, Calif. 90212.

Tickets and information: [phone].

CAPTION(S):

5 Photos, Box

Photo: (1--Cover--Color) On the cover: Emma Ashford, 1, is undergoing chemotherapy to shrink tumors in both eyes. Tumors are nearly gone in her right eye; she's legally blind in her left eye, where doctors are still trying to shrink one large tumor.

(2) Actor Matthew Ashford and wife Christina recently revealed that their 1-year-old daughter, Emma, is being treated for a rare cancer known as retinoblastoma, in which tumors grow in the eye.

(3) Emma Ashford's 6-year-old sister, who made this poster, is rooting for her recovery, too.

David R. Crane/Daily News

(4) ``We don't always save the eye, but we usually save the patient,'' says Dr. A. Linn Murphree, director of the Ocular Oncology Service at both Childrens Hospital Los Angeles and University of Southern California School of Medicine.

Gus Ruelas/Daily News

(5) Amy Drummond, 7, was diagnosed at 9 months after her mother insisted on a closer examination of her daughter's ``slow'' eye.

Myung J. Chun/Daily News

Box: Use camera to check child for eye cancer (See Text)