A SHOULDER TO LEAN ON RARE CANCER UNITES LOCAL MOTHERS.

Byline: KERRY CAVANAUGH Staff Writer

It was just an afternoon stop at a Del Taco drive-through when Lori Tucker got the first sign of things to come. She turned to the back seat to hand 19-month-old Trinity her drink and noticed her daughter's left eye was crossed and moving around.

Tucker reached back and covered Trinity's right eye with her hand, saying, ``Look at me, baby. Look at me.'' But Trinity's left eye rolled up and down and side to side.

``I knew she couldn't see me.''

With a doctor's referral a few days later, Tucker took her daughter to a pediatric opthamologist, who took one look and ordered Tucker to drive immediately to Childrens Hospital Los Angeles in Hollywood.

``I said to the doctor, `I've got to pick my kids up from school, can't we go tomorrow?' And the doctor said, `No, you're going today.'

``My heart dropped when she said that. That's when I knew something was really wrong.''

Within a few hours, Tucker and Trinity were in the office of Dr. A. Linn Murphree, the hospital's director of ocular oncology. He dimmed the lights, peered into Trinity's pupil and knew what he was looking at.

Retinoblastoma.

The rare, fast-growing eye cancer is found in children under 5 and can begin growing while the child is still in the womb. Often it isn't detected until it has grown so large that the eye must be removed.

Some 250 children in the Unites States and Canada are diagnosed with retinoblastoma each year. There are roughly 11 cases per million children under 5.

There are about 115,000 children under age 5 in the entire San Fernando Valley, yet Tucker has found at least seven others in the Valley's far west end who have been diagnosed with the disease -- far more than statistics would predict. And she's begun networking with their moms.

They call themselves the West Valley Retinoblastoma Club.

It's an informal group with no meetings or agendas. It's just a half-dozen moms who lean on each other and understand a world of MRIs, prosthetic eyes and chemotherapy that most people hope never to share.

``A lot of people don't get it. They kind of freak out on you, `Oh my God, your kid has cancer,' and you think, `Now I have to counsel you?''' said Cindy Mays, a Woodland Hills mom whose daughter Sullivan, now almost 3, was diagnosed with retinoblastoma at 4 months.

``But with these women, you all have gone through this horrific experience. I feel like I could just call up these people and just say the worst things. The things we talk about you can't talk about with other people.''

Friends for life

``I know I'm going to be friends with these women for the rest my life,'' said Mays.

The women of the club have gone to Disneyland together, met at the park, shared hospital war stories. Together they've tried to understand how such a rare cancer has touched so many lives in the West Valley.

They worry there could be a cancer cluster in the community and that, somehow, their children's illnesses could be linked to Santa Susana Field Lab -- the former nuclear research and rocket engine test facility in the hills a few miles away.

Earlier this year, two studies paid for by the federal government found slightly higher rates of cancer among residents who had lived within two miles of the lab between 1996 and 2003.

Since then, the women have talked to the researcher, Dr. Hal Morgenstern, who is chairman of the University of Michigan School of Public Health.

He has few answers for the mothers, who have counted eight children with retinoblastoma in the West Valley.

``It's definitely worthy of investigating,'' he said earlier this summer. ``We need to confirm the actual cases in a well-defined period and well-defined population to ascertain whether there's any possible connection with Rocketdyne or anything else.''

Murphree has treated all the children diagnosed with retinoblastoma in the West Valley and has heard the moms' concerns.

His team is one of two that treat all retinoblastoma cases in the western United States, and he warns patients that it's difficult to figure out if there are higher rates of the disease in certain areas.

``The problem always with retinoblastoma is that when you're dealing with a very rare cancer like this, a few cases can seem like a cluster when it's just a random distribution.''

For Trinity, the tumor had grown so large inside her left eye that she could no longer see. The toddler would have to lose her eye.

The day after Murphee diagnosed her, mom and daughter were in the hospital waiting room for her first eye exam, which must be done under anesthetic.

Sitting nearby, Cindy Mays could see Trinity's eye and recognized the signs of retinoblastoma. Only a few months earlier, Mays had pushed her pediatrician to take a second, closer look at her own baby daughter's lazy eye.

Four hours after the second exam, Mays was sitting in Murphree's Hollywood office planning chemotherapy. Because they caught the tumor early and began treatment quickly, Sullivan was able to keep her eye.

But at the hospital, Mays could see Tucker was upset and struggling with the diagnosis. She knew she'd seen her in their Woodland Hills neighborhood, so she introduced herself and got her phone number. That night, Mays had dinner from a local pizza kitchen delivered to the family's house.

``I knew we'd be becoming friends because when you have a child like this you tend to cling on to people who are in the same situation,'' Mays said.

Because Trinity's cancer had reached the optic nerve, which increases the chance it will spread to the brain, the doctors decided to give her aggressive chemotherapy designed for a brain tumor.

Trinity spent 73 days at Childrens Hospital over the next five months. In pain and shock from the treatment, she thrashed in her hospital bed and yanked out the intravenous lines, spraying blood in the room and on her mother.

After those episodes, Tucker would stand in the hallway, crying and talking on her cell phone to Mays.

``She'd already been through it,'' Tucker said. ``She was able to say the right things.''

A few months later, Tucker's husband, Dean, was chatting with another father at a middle school orientation for his son who was entering sixth grade. Talk turned to family, and the men discovered they both had babies with retinoblastoma.

Cindy and Glenn Braggs' son Solomon had just had his eye removed the month before.

``This is supposed to be this really rare disease, and we just met each other at the school,'' said Cindy Braggs, who became fast friends with Lori Tucker and Cindy Mays.

Within a few weeks their children were attending birthday parties at the Tuckers' house.

Solomon was diagnosed after his mother noticed a white glow in the boy's right eye when he was about 6 months.

Glint in his eye

Two months later she took him to the pediatrician for a rash and asked her to check the glint in his eye. Right away the doctor saw the tumor and sent Braggs to a specialist who confirmed retinoblastoma.

``Everything went upside down at that point,'' Braggs recalled. ``It was like getting hit by a tidal wave. We went under.''

In Solomon's case, even though he still could see out of his right eye, there was a risk the cancer could recur if he kept it.

``That was a really tough decision, but you have to make a decision for your baby's eye. I'm a singer, but I've always thought I'd rather lose my hearing than my sight,'' said Braggs, a member of the group En Vogue.

``My heart breaks every day at some point when I think about it.''

But Braggs can lean on the other moms in ``the club.'' They try to meet every few weeks to talk and pray.

Today, Solomon and Trinity have prosthetic eyes, which are like thick white, Lucite contact lenses with hand-painted pupils -- bright blue for Trinity and brown for Solomon, both with little flecks of colors and highlights, just like a real eye.

Sometimes the children pop their plastic eyes out, and the moms share horror stories -- like the little boy who lost his prosthetic eye in the ball pit at Chuck E. Cheese.

Nearly 3 years old and growing fast, Trinity's eye socket will soon outgrow her first prosthetic eye, so her oculist, Stephen Haddad, recently fit her for a new one.

With her prosthetic out while the doctor works on it, Trinity's left eye is a pink hole. But she shows no self-consciousness as she runs through Haddad's office telling visitors, ``C'mon, c'mon, let's go look at my eye.''

Tucker said being around other children who have retinoblastoma and have lost their eyes has helped Trinity adjust.

``It is such a rare cancer, and so you don't find many people who are going through the same thing,'' she said. ``But she knows she's not alone.''

And that is an even greater comfort for the moms of the West Valley Retinoblastoma Club.

``My kids ask, `Why did Solomon get cancer?' I can't say why, but God can always make something great of it,'' Braggs said. ``I hope that one day our kids band together and become this group that speaks out and becomes a really awesome voice for this disease. We will make something positive.''

kerry.cavanaugh(at)dailynews.com

[phone]

CAPTION(S):

3 photos

Photo:

(1 -- color) Lori Tucker with her daughter, Trinity, 3, who lost an eye to the rare, fast-growing cancer retinoblastoma.

(2 -- color) Cindy Braggs and her son, Solomon, 17 months old, share a moment. ``It was like getting hit by a tidal wave,'' she said of his retinoblastoma diagnosis. ``We went under.''

Tina Burch/Staff Photographer

(3 -- color) Dr. Stephen Haddad holds Trinity Tucker as she looks in a mirror after having her prosthetic eye replaced during a doctor's appointment in Hollywood. She was diagnosed with retinoblastoma at a young age.

Andy Holzman/Staff Photographer