September 15, 2008

Reaching Out for Hope — Family and Friends of Patients Are Taking Advantage of Technology to Stay Connected

By Mary Powers

When Memphian James Brownlee was diagnosed with leukemia, he called his mother and sisters with the news but relied on e-mail and text messaging to alert several dozen friends and other family members that he faced a health crisis.

Since then, he has heard from hundreds more as news of his illness went viral on the Web among friends, colleagues, church members and relatives scattered up and down the Mississippi River and across the globe.

While there have been calls and letters, much of the communication has been electronic.

"My life would be hell," Brownlee said of battling cancer without the Web. "I'd have to wait for people to get off work or two or three days for a letter or card. Opening up an e-mail that says I'm thinking of you ... it helps you get over the hump."

Wireless technology is revolutionizing not only patient care, but also the support systems individuals and families fashion to weather a health crisis.

Along with the standard list of 21st century electronic communication tools such as e-mail and MySpace, organizations have sprung up offering free Web pages specifically for patients and families.

In the past decade, a Minnesota nonprofit group known as Caring Bridge has helped patients and families create more than 150,000 such Web sites.

In January, Methodist Le Bonheur HealthCare and CarePages, a Chicago-based nonprofit group offering free Web sites, signed an agreement to expand the service from Le Bonheur Children's Medical Center to Methodist's six other Mid-South hospitals.

"CarePages are a perfect way to support and uplift someone who's facing a health event," said Donna Abney, Methodist executive vice president. "We think the CarePages service is an important one to offer our patients and families."

At least one other Memphis hospital is considering a similar arrangement.

Wings Cancer Foundation, which provides resources and support to Mid-South cancer patients, offers links to both groups on its Web site.

"It really is a great tool for patients and family members," said Sally Hensley, Wings programs coordinator. It allows patients to create a communication hub, she explained. "A lot of times our patients will receive so many phone calls it is almost overwhelming."

A Web site provides both patients and well-wishers a place to go for updates and even photos.

"For people dealing with a long illness, it is so nice to be able to go (to a Web site) and read those encouraging and inspiring messages," she added.

Hospitals are catching on. A growing number allow patients and visitors with laptops to tap into the institution's wireless network. Others provide computer stations in the hospital library or critical-care waiting rooms.

For patients without personal laptops, Methodist has a handful of computers that can be wheeled into patient rooms. This summer, volunteers at Methodist University Hospital were dispatched to help patients set up a personal CarePages Web site.

Patient satisfaction rose after Baptist Memorial Healthcare started offering free wireless connections to patients and families, said Vicki Harden-Balash, of Baptist's information systems department.

"There is a big demand from patients to offer this," she said.

Earlier this year, one family tapped the technology so a father in Iraq could witness the birth of his child in Memphis via a Webcam inside the Baptist delivery room, she said. High-risk pregnant women also use it to stay in touch with the outside world while hospitalized for weeks.

St. Jude Children's Research Hospital's two teen rooms allows teenagers to log in anytime day or night to chat electronically or update their MySpace, Facebook and other Web-based social networking sites.

"It is one way for them to maintain their identity, to stay connected and not be a cancer patient," said Alicia Huettel, St. Jude's family-centered care coordinator. "At 2 a.m. you can't make a phone call (to a friend), but you sure can jump on a computer."

When Brownlee packed recently for an expected three-week stay at Baptist Memorial Hospital-Memphis he included his Blackberry, electronic notebook and two laptop computers.

"Cancer isolates you. You feel like you are alone and you fear being alone during the roughest part of your life," said Brownlee, 30, who taught fourth grade last year at Gardenview Elementary School in Memphis. The Internet has helped him stay connected to the world, including a cousin in Iraq and aunt in California, despite being confined to a cancer isolation unit. He also uses his laptops to download music, watch movies, research his disease and keep up with the news and his writing. He's considering using one of the free services to launch a Web site.

Mike Perry set up a CaringBridge Web page on May 3 just hours after his 5-year-old daughter was diagnosed with a brain tumor. Allyson Perry's site - allysonperry - now runs 16 pages and has received nearly 62,000 hits.

"It's been a lifesaver for us," Michelle Perry, Allyson's mother, said recently from the family's Bartlesville, Okla., home.

That was particularly true earlier this summer when the family spent five weeks in Memphis for surgery at Le Bonheur . Allyson is battling a rare childhood tumor known as a pituitary macroadenoma.

"This allows us to send them updates without having to make all the phone calls, that was a huge benefit to us," Michelle Perry said. Allyson is scheduled to return to Memphis in October for more treatment at St. Jude.

Early on, the Perrys decided the Web site would provide an honest account of their daughter's ordeal. So, the update after Allyson's most arduous surgery included photos showing her with her eyes swollen shut, looking as if she'd been in a fight.

"We wanted people to experience this with us and let them know what she was going through," Michelle Perry explained.

Even more important were the inspirational messages others left on the site. "That was a great support," she said, particularly when the family's return home was delayed. The family eventually plans to turn Allyson's Web page into a book. CaringBridge offers the service to families.

In one of his Web posts, Mike Perry mentioned that Allyson never cried when blood was drawn. It prompted a family friend to order 500 rubber wristbands with the message "The Power of Allyson." The friend used Allyson's Web page to tell others. The wristbands spread across 38 states and at least six foreign countries.

"It is just so supportive," Michelle Perry said of coming across someone wearing the bright purple bracelet. Along with teachers at her children's school and the doctors and staff at her pediatrician's office, Perry said she often spots them on the wrists of folks she's never met.

- Mary Powers: 529-2383



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Originally published by Mary Powers / [email protected] .

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