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Web site lifts a burden for patients' families by keeping loved ones informed By JENNIFER E. O'BRIEN, Special to the Times Union
First published: Sunday, February 17, 2008
Monday, March 24, 2007: Sixteen-year-old Joe Watroba of Rotterdam just wants to be discharged from the hospital after completing one of his early rounds of chemotherapy for the cancer in his leg, especially since he knows he'll have to return for a spinal tap.
Tuesday, April 3, 2007: Joe receives his learner's permit. "Watch out!" writes his mom, Cindy Watroba.
Wednesday, April 25, 2007: Another platelet transfusion. Joe's white count looks good and his red blood cells seem stable, but doctors want to keep an eye on his platelet count.
Wednesday, May 23, 2007: Joe gets the go-ahead to start being more active; he can golf, swim, ride a bike, just no jumping or pounding on his weakened left leg.
Tuesday, Sept. 4, 2007: The long-awaited PET scan results are great! The only areas that lit up on the scan show new bone growth, where his femur is filling in.
For much of 2007, friends and loved ones got updates on Joe's condition in postings on his page on CaringBridge.org during his treatment for large B-cell non-Hodgkin's lymphoma. Regular updates tracked the progress of his illness that was deteriorating his left leg, saying when he was doing well and when he wasn't, when his chemotherapy was completed and when he was back on the golf course. The updates kept friends and loved ones in the loop, without them having to make awkward phone calls to Joe's family.
Cindy Watroba of Rotterdam originally heard of CaringBridge.org several years ago, when the younger sister of her son's friend had cancer and went to Boston for treatment. Watroba was able to follow her medical journey and leave messages for the family on their CaringBridge.org page. She never imagined she'd one day create a page for her own son.
But last Valentine's Day, which is also her birthday, Watroba and her family learned her youngest child, Joe, had cancer. Watroba, whose older brother, Tim, died of cancer in August 2005, said the first few calls to family members were rough. Despite her own pain and worry, Watroba felt the need to comfort others. "I almost felt as bad for them to have to break the news," she said.
After the initial shock, the Watrobas' next few days were a blur of nonstop doctor's appointments. As Joe was being admitted for one of his first few rounds of chemo, Watroba was reminded of CaringBridge.org. Another parent in the waiting room showed her the page she had created for her son on the site. She urged Watroba to do the same.
Watroba remembers sitting with Joe in his hospital bed to create his personal page, which includes photos, a "My Story" page, and space for daily updates and visitors' messages.
The beginning
In 1997, CaringBridge.org's founder, Sona Mehring, created a Web site for a close friend who suffered a life-threatening pregnancy and delivered three months early. The Web site allowed family and friends to stay informed about the critical situation, without putting added pressure on the mother or hospital staff. Visitors to the site were also able to post messages of love and encouragement to the family.
The baby died in surgery nine days later. From that tragedy, a memorial fund was established that allowed The Children's Hospital in St. Paul, Minn., to dedicate a computer and Internet access to families wishing to establish their own online communities. That single computer led to CaringBridge.org, which has since helped 90,000 families across the world create free, personalized Web sites.
The site is free to users, but CaringBridge.org accepts donations and has grown primarily through word of mouth.
Although Joe didn't want to be too involved in the day-to-day posting of journal updates, Watroba said he always wanted to read the messages he received.
"It was a real boost, even to see the number counter go up for visitors," she said. During extended stays for treatment, Joe could bring his laptop and be connected to well-wishers.
Watroba found it was a great way to let everyone know what was going on, especially since some people might not feel comfortable asking.
Helping through
Mehring says her organization aims to make creating an individual Web site as easy as possible.
"We understand it is a stressful time," she said. "We're here to help people through the situation."
As Watroba noted, Mehring finds that once a family creates a Web site, they often feel like a burden has been lifted, and writing journal updates can be therapeutic.
Mehring says that every day, more than 250,000 people receive e-mail notification that a journal update has been posted to a loved one's Web site.
Joe's cousin Mary Donnelly of East Greenbush said she liked the ease and immediacy with which she could communicate with her cousin when he was in the hospital, and she appreciated the daily updates her aunt sent to keep everyone apprised of Joe's condition.
While Watroba says she still holds her breath at every checkup, she reports that Joe's last two PET scans, tests that detect diseased areas of the body, have come back clean. He is back at school at Mohonasen High, played golf and basketball this school year, and is gearing up for tennis in the spring.
Watroba still makes frequent journal updates, such as the holiday greeting that thanked everyone for their support over the past year, and most recently, a report that the regularly scheduled appointment with the oncologist went perfectly.
Jennifer E. O'Brien is a freelance writer from East Greenbush.
On the Web
For more information about how to create a Web site or make a donation, visit
http://www. CaringBridge.org.
http://www.timesunion.com/AspStories/story.asp?storyID=663987
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