Article published March 28, 2007
CLICKING AND CARING
Web sites serve as support networks for patients, families
Staff Sgt. Matt Keil smiles from his bed in Walter Reed Army Medical
Center in Washington as his wife, Tracy, adjusts his clothing. The guestbook portion of Sergeant
Keil’s site on CaringBridge.org contains hundreds of messages of support to the wounded soldier, a graduate of Anthony Wayne High
School, and his family.
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By ANN WEBER
BLADE STAFF WRITER
Hundreds of supporters sit daily with Tracy Keil at the bedside of her husband, Staff Sgt. Matt Keil, at Walter Reed Army Medical Center in Washington, where he's being treated for injuries inflicted Feb. 24 by a sniper's bullet in Iraq.
They're with the wounded Anthony Wayne High School graduate in spirit, through messages they've posted on CaringBridge.org. That site, another one called CarePages.com, and others like them provide free, private, and secure Web pages on which family members can post patient updates and pictures, and receive messages of concern and encouragement from people near and far.
They're electronic group hugs that bring together the best of man and technology.
"Dear Matthew and Tracy, even though you have no idea who I am, I want you to know that you both are surely in my thoughts and prayers. I work with your Uncle Jim ..." writes a woman from Napoleon.
"Hi Matt and Tracy, I am a friend of Lyne's in Chicago, and I just wanted to drop you a line to let you know that I am so happy to read that you are making progress ...." says a message from a Chicago resident.
Alexis Flynn, 6, shown with her father, Tony; brother, Austin, 16; and mother, Erica, has received thousands of visits to her site on CaringBridge.org. ‘The uplifting words that people put in there, especially in those down times, really give you strength,’ Erica Flynn says. The youngster was diagnosed with leukemia in 2004 and finished chemotherapy in October.
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THE BLADE/LORI KING
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"You may not remember me, but we were classmates at AWHS. My mom told me your story and I just want to pass on our best wishes to you ... " a person named John writes.Another comes from relatives in Grand Rapids, Ohio: "Tracy the last thing we do before bed is check for your update. We are able to go to bed each night, reassured by your daily updates. ... Till we see you two in person, know that you are loved and we keep you inour prayers minute by minute."
On and on the words flow in the guestbook portion of Sergeant Keil's site - www.caringbridge.org/visit/matthewkeil. It has registered thousands of visits and holds hundreds of messages from relatives and close friends, acquaintances and former classmates, Army buddies and complete strangers.
"I read him the site, what people are writing," Mrs. Keil says in a phone interview from Washington. "He loves hearing how much support he's getting. It really perks him up."
She hopes that eventually her husband will be able to compose his own daily updates for the page using voice-activated software.
For now, the daily report she writes for readers is an easy way to tell everyone how things are going, she says. It gives her something to do when she returns to her room every night, and serves as a record of his progress. "I can re-read the journals and realize, wow! He's come a long way," Mrs. Keil adds.Benefits for all
It's therapeutic for everyone who uses it, she points out - those who are writing, those who are reading, and the patient at the center of their overlapping worlds.
"The uplifting words that people put in there, especially in those down times, really give you strength," agrees Erica Flynn of Montpelier, Ohio. Mrs. Flynn and her husband, Tony, set up a CaringBridge page for their daughter, Alexis, 6, who was diagnosed with acute lymphoblastic leukemia in July, 2004.
Alexis finished chemotherapy in October, and "things are pretty normal right now," Mrs. Flynn says. She updates the page at least once a month after Alexis sees her doctor, and the Flynns continue to share the address of the site (www.caringbridge.org\\oh\\alexis) in hopes that it will inform and inspire other families who are coping with a child's serious illness.
Since the page was created, it has had more than 24,000 hits, Mrs. Flynn says, including someone who posted a message from Africa.
"The ability to leave a message is a very big deal, and in turn those messages add up to a large part of the healing process," says Eric Langshur, founder and CEO of CarePages.com, in a telephone interview from the company's offices in Chicago.
He and his wife, Sharon, understand the power of having an online support community during a medical crisis: The first CarePage nine years ago was theirs.
The Langshurs' son, Matthew, was born with a congenital heart defect that required surgery when he was just a week old. "We created a page to let friends know how he was doing, and how we were doing," Mr. Langshur says. By the time Matthew had his third open-heart surgery at the age of 18 months, they were receiving 2,000 visitors a day on the page - not just family, friends, and co-workers but also families of other children with heart defects.
The Langshurs were so moved by the support that they decided to make such pages available to anyone who needs them. "So we quit our jobs and we've been at this now for seven years. We have built the largest online community of its type in health care," Mr. Langshur says.
Personal Web sites for patients reduce stress for families by making it easy to communicate what's happening, and by providing a source of comfort, he continues. For visitors, the page is a way to stay up to date and in touch without feeling as though they're intruding at a difficult time.
"We have an average of 63 people who visit every Care-Page, and they come back over and over and over," Mr. Langshur says. (Visitors have to create a member name and password to use to sign in every time they visit a patient's page.)Setting up pages
A personal page at sites such as CarePages or CaringBridge can be set up by or for any patient -whether he or she is hospitalized, in a nursing home or rehabilitation facility, in hospice, or at home. Just go directly to the Web site and follow the directions for creating the page. Some health-care institutions establish partnerships with the providers and offer links from their own Web sites.
ProMedica Health System's Flower Hospital is a sponsor of CaringBridge, and expects to have a link up and running in April, says spokesman Jenny Goldberg. At least six computer work stations will be available throughout the hospital for patients to use, she adds.
Mercy Health Partners offers a link to CaringBridge for all its facilities. Go to www.mercyweb.org and look for the list of hospitals at the upper right. Click on, say, St. Vincent Mercy Medical Center; when that page comes up, look to the left-hand column to find the small rectangle with the CaringBridge logo, and click.
You have to know the address of a patient's page to access it; you can't just wander through reading everyone's updates and messages. Nor can you find a patient's secured Web site by typing the name into an Internet search engine - unless the address has been published, such as Sergeant Keil's.Cancer patients
Sarah Bednarski, spokesman for Mercy Health Partners, says their biggest users of CaringBridge sites have been families with children who are cancer patients at St. Vincent Mercy Children's Hospital. Parents often find out about CaringBridge from other families, or through the hospital's Family Resource Center where they have access to computers for research and personal use.
St. Luke's Hospital in Maumee is supporting the trend toward electronic communications through free patient "e-Greetings." Accessed through the hospital Web page, www.stlukeshospital.com, the service delivers e-mail messages to inpatients. Click on e-Greetings to bring up a form that asks for information about the patient and sender, and includes space for a message.
"They don't need to know the room number, just the patient's first and last names," explains spokesman Kathy Connell. "When it arrives on our end, we print it out and hand-deliver it to the patient's room."
Meanwhile, Mrs. Keil maintains her reports to her growing online family.
One recent posting relates that day's events, asks for prayers during a medical procedure planned for the following day, and again thanks everyone for support.
"Okay now I am done for the night. Goodnight!
With Love,
Tracy and Matt"
Contact Ann Weber at: aweber@theblade.com or 419-724-6126.
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