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Rhode Island news

A lifeline for Jonathan

Computers and video technology give 10-year-old Jonathan Walker, of South Kingstown, a window into a normal childhood.

01:00 AM EST on Sunday, January 22, 2006

BY KATIE MULVANEY
Journal Staff Writer

SOUTH KINGSTOWN -- Stacks of textbooks sit on the table in front of Jonathan Walker. The fifth grader can guide an old-school math student through the complexities of lattice multiplication. He reads aloud at a fast clip and easily digresses into a fantastical world of aliens and creatures that save planets.

Jonathan is a typical 10-year-old boy. His innocence is still unrestrained, his imagination vivid. But leukemia has carved a dividing line between Jonathan and his peers.

The disease kept him from the classroom throughout first grade and on and off during the following years. He underwent a bone marrow transplant last spring and cannot return to school until his immune system fully rebounds. That date lies ahead indefinitely.

That means Jonathan rarely plays with or even visits with friends or fellow patients.

Jonathan's parents, South Kingstown schools, several companies and the hospitals that care for him have collaborated to bridge that isolation. Employing the same technology businesses use to hold videoconferences across the globe, Jonathan is able to connect with his class daily, or as often as his health allows.

On a recent morning, a video monitor in the corner of Helen Pernicone's fifth-grade classroom at Peace Dale Elementary School rings softly -- a call is coming in. A moment later, Jonathan's face appears on one screen, his view of the classroom on the other.

"Hey, Jon," his classmates call out. They wave. He is tuning in from an isolation room on the fifth floor of Hasbro Children's Hospital in Providence, where he has been since just after Christmas, fighting a fierce and lingering stomach flu.

His twin brother and classmate, Matthew, watching from the classroom, fixates on Jonathan's red shirt: "Look at his shirt. It's weird." Matthew is quiet; his dark brown eyes soak in everything.

"When are you coming home?" their teacher asks. "I'm hoping soon," Jonathan replies.

A handful of students stand in a half-circle in front of the monitors as the teacher announces the next class project: building robots related to the Olympics.

"Catapult!" shouts Jonathan. His IV tubes dangle as he retrieves a motorized truck to show the class. A person in scrubs briefly comes into view.

From a laptop next to his hospital bed, Jonathan controls a Web cam fastened to one of the monitors in the Peace Dale classroom. He is able to zoom in on classmates, and rotate the camera view around the room. Another Web cam aims at him from atop his laptop.

"It's cool because I get to see my brother. Jon's away most of the time," Matthew says.

Jonathan solemnly repeats the pledge to read often and uphold the qualities exemplified by the Book Buddy program, in which fifth graders help first graders read. Pernicone asks students what citizenship means. Jonathan raises his hand, which the teacher doesn't catch. He listens as first-grade teacher Donna Santaniello reads about Martin Luther King and tips the pages toward the camera.

He receives a gentle scolding when his attention wavers. "Jonathan, are you with us?" says Pernicone, who meets weekly with his tutor to keep his lessons current.

"I like it because I get to do what my class is doing," Jonathan explains. "I can do everything except gym." The best part is seeing friends.

The feeling is mutual. Connor Ford lives in Jonathan's neighborhood and misses hanging out. "At least I get to talk to him."

JONATHAN'S FATHER, Hal Walker, conceived the idea of videoconferencing after Jonathan was selected by CISCO Systems to say hello to Santa from Children's Hospital Boston in December 2004.

Dave Anderson, of the consulting company Skill Builders in Wakefield, tested out remote Web cams that Jonathan could access from Memorial Sloan-Kettering Cancer Center in Manhattan, where he received the transplant last year. Anderson would pose a question on his white board; Jonathan would answer by e-mail the next day.

The family and Anderson contacted CISCO for technical advice about streaming video to keep Jonathan connected to his classroom. CISCO was intrigued by how far they got on such a limited budget and offered a more-technologically advanced solution with the help of Videre Conferencing in Quincy, Mass.

CISCO loaned the Walkers Tandberg videoconferencing units, one of which was initially placed in his fourth-grade classroom at South Road Elementary School and the other in their home. Cox Cable donated the cable connection, Sciences International Corp. the laptop.

The system allows Jonathan access to his classroom from home or the hospital, usually at prearranged times. When hospitalized, he can link with his family at home and check in on Buddy, the family's miniature schnauzer. The connections between an immune-suppressed patient and his classroom were a first for Memorial Sloan and Hasbro, Jonathan's father says.

"It's incredible," said David Hemendinger, chief technology officer at Hasbro. "Hopefully, it brings somewhat of a level of normalcy to his life."

Hasbro has the ability to provide all its patients with similar services and expects to see more in the future, he said.

JONATHAN IS an upbeat boy, but his patience frays every now and then. He wishes he could play with other patients, and he imagines what his friend Connor will eat as a snack after school. Solid foods have been running through him since late December, and his diet is limited. Bruises mark his right arm from the intravenous lines.

The interactions are essential, says his dad, Hal, a researcher with the U.S. Environmental Protection Agency.

"It's really a lifeline," says Hal, who alternates sleeping at the hospital with his wife, Kate. "He would be a different kid. He can't touch, but he can share."

His parents hope Jonathan, who is now leukemia-free, will return to the classroom in the flesh in April, one year after his marrow transplant.

kmulvane@projo.com / (401) 277-7417

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