Laptops Ease Pain for Seriously Ill Kids

Doctors poked and prodded, but Jacob Weeda wouldn’t look up. They strapped tubes to his arms and stuck him with needles, and still the 12-year-old could not be distracted.

While undergoing another round of treatment for a rare blood disease, the Santa Paula youngster was focused on mastering a new computer game, clicking away on a high-powered laptop given to him hours before to relieve the drudgery of the doctor’s office.

“This is so cool,” Jacob said, sitting through his ninth blood transfusion in recent years. “I’m going to take this everywhere.”

That’s the idea. For the last six years, a Ventura County group has worked to put computers in the hands of sick children such as Jacob, part of a growing movement to tap technology to ease the suffering of children plagued by serious illness.

Healthcare providers nationwide are turning to computers to connect chronically ill children to the world around them, creating elaborate networks on which youngsters can play games, do homework or navigate a virtual world of chat rooms and e-mail to escape the loneliness and anxiety of prolonged medical treatment.

The Ventura County campaign was launched by Steve and Cathie Knapp of Ojai, who lost their 16-year-old son in 1998 to cystic fibrosis. Danny Knapp loved his computer, using it to do schoolwork and write short stories. It became his window to the world, allowing him to reach out and make friends even when his illness confined him to home.

The Dan’s Room project has raised tens of thousands of dollars and given out nearly two dozen computers to children battling cancer, AIDS and other illnesses. Donations come mostly by word of mouth and through a website -- www.dansroom.org -- created in Danny’s honor.

In recent years, laptop computers have gone to a 13-year-old awaiting a lung transplant at Childrens Hospital Los Angeles and a 6-year-old who was recovering from experimental surgery for congenital heart disease.

Computers remain with the youngsters until they get better or die, returning only long enough to go to the next sick child.

“Danny would be so happy. He’d be so proud of us,” said Cathie Knapp.

“The idea is to provide a way for kids to forget about being sick for a while,” she said. “I wish everyone could see this at work.”

That work is spreading to hospitals and clinics nationwide. The most far-reaching initiative has been spearheaded by the Los Angeles-based Starbright Foundation, which in 1995 launched an interactive computer network linking seriously ill children in hospitals across the country.

Called Starbright World, the program is available in nearly 100 hospitals, including Childrens Hospital Los Angeles, City of Hope National Medical Center in Duarte and Miller Children’s Hospital in Long Beach. The project provides youngsters a three-dimensional play space in which they can trade e-mail, post to bulletin boards and search for friends with similar illnesses.

While such high-tech approaches help youngsters pass time, researchers are starting to chronicle 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. Another by the National Cancer Institute found that the electronic network significantly reduced isolation while promoting a willingness among young patients to return for treatment.

“In this day and age, there’s real value in being able to connect electronically,” said Lori Wiener, a research specialist at the National Cancer Institute and coauthor of the agency’s study.

“I do believe this is the wave of the future,” she added. “There are tremendous opportunities for learning, networking and emotional growth that can be achieved by providing computer access.”

That means little to Jayden Tiscareno, who is almost 5. All he knows is that when he is at the controls of his lightening-fast laptop, he can be like any other computer junkie: highly mobile and just a few keystrokes away from instant entertainment.

The Santa Paula boy received a Dan’s Room computer in January 2004, before going for a third open-heart surgery to correct a heart condition. While waiting to undergo the procedure and during his recovery, he watched DVD movies and plugged into the Internet to download games, impressing his doctors and nurses with his computer knowledge. Now he’s tapping educational programs to learn the alphabet and prepare for his first year of school.

“It was such a positive thing for him,” said his mother, Kathy Tiscareno. “Kids like Jayden are going through overwhelming situations in their lives. They don’t have playmates like other kids have. They don’t get the childhood experiences other kids get. But they’re smart children, and this is something that can help them deal with what they are going through.”

The Dan’s Room computers come loaded with games and educational programs. Lately, Santa Barbara-based software manufacturer QAD Inc. -- where Cathie Knapp coordinates human resources -- has been providing the lion’s share of the money to buy laptops and accessories, including one given last week to 12-year-old William Gil.

While his parents looked on, doctors and medical assistants handed the Oxnard sixth-grader a laptop. They fitted him with a backpack and loaded enough software to get him through many medical appointments.

Good thing. William has aplastic anemia, a rare and serious disease in which the bone marrow stops making enough blood cells. Since being diagnosed three yeas ago, he’s had more than 150 doctors’ visits.

“You can see why he needs a computer,” said Dr. Chris Landon, head of pediatrics at Ventura County Medical Center and one of the first Dan’s Room supporters. “Children like William Gil and Jacob Weeda spend a lot of time waiting, and it’s not always good news at the end of the wait. For a lot of these kids, this connection to the world can make all the difference.”