New World at Ill Children’s Fingertips

In a virtual world of chat rooms and e-mail, 14-year-old Dulce Magana can stop being a sick kid for a while.

She can push aside the unyielding pain brought on by the cancer burrowing deep in her bones. She can forget about the clumps of hair that fall out after long bouts of radiation and the waves of nausea that wrack her body, leaving her too weak to walk.

Clicking away on a high-powered computer on loan at her Port Hueneme home, the frail teen can be like any other Internet junkie. Highly mobile. And absolutely anonymous.

“On the computer I can be anybody I want to be,” Dulce said. “When I talk to somebody, I can invent a whole new person. Nobody has to know I’m sick. I can just be a normal kid.”

Across the nation, health-care providers are turning to computer technology to ease the suffering of children such as Dulce, youngsters plagued by chronic illness and cut off from the outside world.

The campaign to put computers into the hands of sick Ventura County kids, however, was started by an Ojai couple who lost their only child earlier this year to cystic fibrosis.

Steve and Cathie Knapp created a program called Dan’s Room in memory of their 16-year-old son who loved computers and for whom the Internet was an escape from the loneliness and anxiety that came with prolonged medical treatment.

Dulce was the first recipient of a Dan’s Room computer. But in the next year the Knapps and the loose-knit group of fund-raisers and financial contributors they have assembled hope to place a dozen more computers, most of which will be in the pediatric ward at Ventura County Medical Center and the children’s chemotherapy lab across the street.

“Danny got so much pleasure on the computer, it was such an important part of his life,” Cathie Knapp said.

“It’s important to give these kids the feeling that they’re not alone, that they’re not the only ones who are going through what they’re going through,” she said. “But it’s just as important to let them explore a world where they can forget about being sick, where their age or appearance or physical condition just doesn’t matter.”

All of the machines will be loaded with a software program allowing youngsters to play games or do homework together, to talk with each other or explore on their own, to share their thoughts--if not their fears--about sickness and death.

Ultimately, the Knapps hope to link the system with similar networks tying sick kids together in hospitals across the state and the nation.

“My vision is to have all these kids chatting with each other,” Knapp said. “Frankly, I can’t figure out why somebody hasn’t done it before.”

Increasingly, hospitals are doing exactly that. The most far-reaching initiative has been spearheaded by the Los Angeles-based Starbright Foundation, led by Chairman Steven Spielberg. In 1995, the foundation launched Starbright World, an interactive computer network linking seriously ill children in about 30 hospitals nationwide to a 3-D play space where they can explore and communicate with each other.

Medical Benefits of Computer Play Studied

In Southern California, the network is online at UCLA Children’s Hospital and Miller Children’s Hospital in Long Beach.

The goal is to be in 50 hospitals by the end of the year.

While such high-tech approaches help youngsters pass the time, researchers also are studying the medical benefits.

One study, conducted at Mount Sinai Medical Center in New York, found that children who explored Starbright’s on-screen universe experienced less pain and anxiety than other youngsters.

Such research is necessary to prove the program’s value because the technology is costly and resources are limited, said Dr. Melvin Marks, administrator for Miller Children’s Hospital.

“We have seen children and their families benefit in many ways,” said Marks, who sits on Starbright’s board of directors.

“However, reading a good book, singing songs or drawing with children might also be very beneficial,” he added. “One of the reasons we are doing research is to assess the value of this very special but expensive resource.”

For now, Starbright World is only available to hospitals with 75 or more pediatric beds, but plans call for the program to eventually expand to smaller hospitals and clinics.

In Ventura County, Dulce Magana couldn’t wait that long.

She was diagnosed at age 11 with an aggressive bone cancer called Ewings sarcoma. It started as a tiny lump on her left leg and quickly took over her body. Cancerous tumors now nest on her pelvis, ribs and spine.

She has undergone countless hours of chemotherapy and radiation. She has had two surgeries to root out malignant cells. Still, the disease has the upper hand.

“She is the sweetest, kindest, most gentle person you’ll ever meet,” said Dr. Chris Landon, head of pediatrics at Ventura County Medical Center, which oversees her care in conjunction with Children’s Hospital Los Angeles.

“She is a brave and wise little girl,” Landon said. “Unfortunately, there was little we could do for her.”

Because Dulce’s prognosis was grave, last month the nurses who befriended her over the years hosted a quinceanera, a traditional Mexican celebration for girls on their 15th birthday.

It didn’t matter that she wouldn’t turn 15 until later this month.

Or that her relatives planned to stage their own quinceanera closer to her birthday. Dulce deserved a big party, the nurses reasoned. And she deserved one now, before it was too late.

An Emotional Dance With Her Father

On a Saturday night as the sun set over Oxnard’s La Colonia barrio, dozens of friends and family members gathered at Our Lady of Guadalupe Catholic church for the event--part religious ceremony and part birthday celebration.

Dulce wore a white gown that resembled a wedding dress. A wreath of flowers crowned her cropped black hair.

She sat at the head of a long table in a church hall decorated with crepe paper and orange and blue balloons.

It is customary for the birthday girl to dance with her father, but few people thought Dulce would be able to uphold that tradition. An operation to remove a tumor from her leg has left her unsteady on her feet, forcing her to use a metal cane for balance.

Still, she danced. Her father, Jose Magana, clutched her tightly to prop her up as they turned slow circles across the floor. All eyes were focused on them.

There were times when she was so sick that her 15th birthday seemed out of reach.

Now, with the birthday waltz winding down, the emotion of the moment became contagious.

Even the nurses, well-practiced at coping with death and disease, bolted from the room in tears.

“I guess I didn’t handle that too well,” said Dee Johnston, wiping her eyes as she reentered the church hall. A nurse with the Livingston Memorial Visiting Nurses Assn., she has helped care for Dulce since the day she was diagnosed.

“It took so much courage for her to do that,” Johnston said. “She’s just an awesome kid.”

It was the nurses who got Dulce hooked on computers. She got her first one three years ago through the Make-A-Wish Foundation. When that one became obsolete, the nurses plugged her into the Dan’s Room project.

Online, she leaps from one virtual universe to another with the click of a mouse. But what she likes to do most is drop into chat rooms and join electronic conversations.

Most of it is typical teenage chatter. More than one conversation has been with boys wanting to get to know her better.

She also uses the computer to keep in touch with her doctors and nurses, firing off regular volleys of e-mail.

“She e-mails me all the time with blooming flowers and dancing penguins just to wish me a happy day,” said Tracy Lyou, a nurse with the Landon Pediatric Foundation. “Can you believe it, this kid telling me to have a good day?”

For Dulce’s mom, Maria Refugio Gaytan, the new technology is as difficult to understand as the network of malignant cells that have taken over her daughter’s body.

A former factory worker, she knows little about chat rooms and e-mail. But she knows they make her daughter happy, that they take her mind off the pain. And there has been too much pain in all of their lives.

Gaytan already has lost one child. It happened in early 1996 on a day she drove Dulce to Childrens Hospital in Los Angeles for radiation treatment. Her 15-year-old son, Luis, was supposed to go with them but there was no room in the car.

Instead, the youngster set out for his father’s home--he and Gaytan had divorced before Dulce was a year old--a few blocks away. He never made it. Magana was riding in a car sprayed with gunfire after a confrontation with alleged gang members in a residential neighborhood in Oxnard.

Eight shots were fired, two hit Gaytan’s son. He died two hours later at St. John’s Regional Medical Center.

Gaytan is devoutly religious and leans heavily on her faith to get through tough times. Still, sometimes it all gives way to confusion.

“There are times when I think, ‘Is God testing me?’ ” she said, her voice barely above a whisper as she waited at Childrens Hospital recently for her daughter to undergo another round of radiation treatment.

“But then I see Dulce, I see how she is around people, how she is like a light in their lives,” she added. “She has something special, something inside her that makes people love her. That’s a good reason to continue forward.”

Dan’s Room Project a Grass-Roots Effort

A mother’s grief can be a powerful thing. Just ask Cathie Knapp. When she lost her son, she needed to find a way to work through her pain.

That is when she came up with the idea of creating a computer network for sick children in Danny’s name.

The Dan’s Room project is a grass-roots campaign that consists mainly of Knapp asking for donations and tapping doctors, nurses and others in the community to help spread the word.

She is persistent and effective. And it’s hard to say no to her.

She persuaded Oxnard-based Golden Express, a manufacturer of advertising materials, to donate 150 Dan’s Room mouse pads to the project. All City Computers in Camarillo is providing computers at a discount.

Even Knapp’s dentist, Jeffrey Trester of Oxnard, plans to soon hold a fund-raiser, during which all the money he collects for a day of dental work will go to Dan’s Room.

At ComputerFocus in Oxnard, where Knapp is a receptionist, co-workers volunteered to set up the computer network and write the software program that will allow youngsters to chat with each other, play interactive games and access the Internet.

Two computers have been purchased, the first with money donated in Danny Knapp’s memory by family and friends.

The second computer, which is being mounted to a hospital tray table for use at Ventura County Medical Center, was purchased by El Rio-based transportation company Wilsey Bennett, where Steve Knapp works.

John Yamashiro, Wilsey Bennett co-president, said he didn’t think twice when asked to contribute to the project.

“We are a family oriented company, and we all kind of lived through the ups and downs with Steve and Cathie,” he said. “I think this is a great idea. To me, the cost is insignificant when it comes to the happiness of a child.”

Hopes for a Trip to Disneyland

Most recently, the Ojai Valley Woman’s Club has raised $650 to buy a third computer, which will be installed in the pediatric chemotherapy lab. Club members plan to hold card parties and luncheons to generate the rest of the cash.

“I can’t sleep at night because I want to get a computer in there so badly,” said Glennetta Berthelson, who overheard Cathie Knapp talking about Dan’s Room at a rummage sale and persuaded fellow club members to adopt it as their fund-raising project this year.

“I just think it’s a wonderful thing to do,” Berthelson said. “It really gives you hope for what you can do for some of these kids.”

Dulce’s hopes are all short-term at the moment.

She has been in and out of the hospital in recent weeks, battling a series of life-threatening complications. She has decided that when the time comes she wants no heroic measures used to save her life.

Until then, she has plenty to occupy her. She hopes to take a trip to Disneyland, making up for one she missed a couple of weeks ago when she was hospitalized with excruciating lower back pain.

She can’t wait to take part next Sunday in the quinceanera her relatives have planned for her. It will be an elaborate affair. She hopes once again to dance with her father.

She also hopes to see the Dan’s Room project set up at the county hospital so she can explore cyberspace with other sick children tied into the hospital network.

“Sometimes you think you’re the only one suffering this much,” she said. “It would be nice to talk to other kids and tell them they’re not alone, that there’s someone else who knows exactly how they feel.”

FYI

The Dan’s Room Project seeks to put computers into the hands of critically ill children in Ventura County as a way of helping relieve the anxiety and isolation that accompanies prolonged medical treatments and extended hospital stays. To learn more about the project, or to make a donation, call the Landon Pediatric Foundation at 289-3338, or e-mail Steve and Cathie Knapp at mendak01@sprynet.com