Spirited, high-pitched yelps of Norwegian are coming from the game room at the Hackerman-Patz House across the street from Sinai Hospital.
"He's playing Donkey Kong," explains Silje Lokeng, whose five-year-old son Martin has quickly mastered his latest obsession. "Just before he had the surgery, he saw a commercial for Donkey Kong. And the first thing he said when he woke up was 'Donkey Kong!'"
While Martin frantically tries to avoid pixelated barrels, his mother is in an adjacent lounge, putting together a photo slideshow to post to Martin's blog (martinsperthesforening.com). On the site, she has carefully documented her son's long struggle with Perthes disease, a rare degenerative disease of the hip joint, that can lead to severe osteoarthritis and make it difficult or impossible to walk.
"Martin's first day was pretty tough when the epidural suddenly stopped working and it took 17 hours before someone found out about it," she wrote, in Norwegian, the day after Martin underwent surgery last November. "It was very hard to see him with so much pain... As you know, we have a real tough guy. Although there is pain now, we try to comfort ourselves that it is better with a couple of months of pain than a lifetime."
When Martin first began limping at age four and was diagnosed with Perthes, a corrective surgery was performed in Norway. After recovering from the surgery, Martin still had significant pain, but doctors said he was healed. His mother took to the Internet, seeking out doctors abroad who specialize in Perthes, including Dr. Shawn Standard, an orthapedic surgeon at Sinai and one of the world's foremost experts in the disease. Lokeng sent Martin's x-rays to Standard, who advised another surgery. It was then that she started the blog, both to raise money for the trip and to detail the emotional struggle of trying to get help for her son.
"Probably 10, 15 years ago, we wouldn't have had the opportunities we've had today," she says. The blog got the attention of the Norwegian media, helping to attract more than 21,000 visitors. It ultimately raised more that $30,000 for Martin's treatment, but Lokeng says the website has been most valuable as a way to endure an experience that has clearly taken a toll on her.
"It's been tremendously helpful for me," says Lokeng, who has dutifully maintained the blog during the three months she and Martin have been staying at Hackerman-Patz, a home for families coming to Sinai for long-term care. "When I'm having bad days, it helps to get it out of my system, to write about it. There are a lot of things about being here that are hard: being away from friends and family—I have a four-year-old daughter at home. We have a second family here now, but it's not home."
Martin trundles out of the game room as fast as his legs—which are clamped with metal braces, called Fixators, screwed into his bones—and walker will carry him. An older boy, Zachary, who is staying at Hackerman-Patz while he undergoes limb-lengthening surgery, follows closely behind in a wheelchair. In increasingly desperate tones of Norwegian, it becomes clear that Martin is asking if he can go up to Zachary's room to play Call of Duty. (Martin speaks almost no English, but is somehow fluent in the international language of gaming.)
Lokeng lets her cherubic-faced boy down gently—they're about to have lunch—but smiles at how active and happy he is.
"He'll be totally recovered," she says, still seeming slightly astonished, considering that he spent the better part of a year in a wheelchair. "He'll be able to play sports again."
And thanks to the blog, friends and family back home in Norway have been part of the process at every step.
"They see Martin when he leaves, in a wheelchair, they'll see him when he comes home in a brace, but they wouldn't know anything in between," she says. "This is a great opportunity for friends and family and people who have donated money to see that it's worth it, that everything that we have done is worth it."
Dr. John Cmar, the associate director of the residency program at Sinai is active in the hospital's efforts to integrate blogs and social media into the patient experience. He estimates that 10 percent of patients maintain blogs, but, he adds, the number is quickly rising.
"People with an illness or an injury use blogs as their outlet to honestly talk and, not only update people they know about their situation, but in a therapeutic way, talk about things and have this broader community of people be able to respond and offer perspective and reassurance," he says. "You can see the human side of their story coming through in what they're writing."
Sinai often suggests that patients undergoing long-term, inpatient care open a page on CarePages, a website that helps patients maintain blogs where they can write updates, upload photos and videos, and read wishes from friends and family who visit the site.
Starting a page is particularly encouraged, Cmar says, for patients who are undergoing treatment far from home, like Martin.
Haley Wohlford of Roanoke, VA, is another such patient. The 17-year-old girl has spent all of two recent summers at Sinai undergoing the often painful process of limb lengthening. Her mother, Marcy Wohlford, started a CarePages blog for Haley before the treatment began and it proved to be a lifeline.
"We started it thinking it was a good way to pass on information and not having to say the same thing over and over," says Marcy. "We didn't realize it was going to be more than that."
During the three months after each surgery, when Haley's movement was limited and her physical therapy was often painful, maintaining the blog became a highlight of her day. "When I woke up, the thing I always wanted to do was go look at my CarePage and see how many messages I had," she says. "You only do, like, four things a day and that was the top of the list."
After the first surgery, in the summer of 2006, Marcy mostly updated the blog, noting Haley's progress, posting pictures, and responding to questions, while Haley mostly enjoyed going through the hundreds of messages from family, friends, and other well-wishers that poured into the site's virtual guestbook. But when they came back for the follow-up surgery in 2009, Haley started writing the entries herself.
"Now, we have to remind her to keep it to just medical updates," says Marcy. "And use Facebook for personal stuff."
Through the blog, the Wohlfords also became a great resource for other families considering limb lengthening. They frequently hear from strangers who found the blog and have lots of questions. They even went out to dinner with such a family the night before their child's first surgery.
Cmar says this type of exchange—where patients share experiences and medical advice—is the one area where these blogs can sometimes be problematic.
It's great, he says, for patients about to go through a difficult procedure—chemotherapy, for example—to seek out and talk to other patients who have endured the experience. The comfort patients get from such an interaction can even, he says, improve their response to the treatment. The danger comes when patients without medical training offer medical advice.
"I've seen enough examples of people getting misinformation from well-intentioned people at other patient blogs," says Cmar.
What can be particularly difficult about patient blogs, as opposed to other sources on the Internet, is that the patients writing them are often seen as unimpeachable sources.
"Patients who are not medically trained may misperceive something about their own treatment," says Cmar. "If someone takes something they learned from a comfortable source, the physician is faced with someone who is convinced that this is actually true. The physician has to overcome this disbelief."
Despite his concerns, Cmar says the benefits of patients maintaining blogs generally outweigh the risks. This is particularly true, he says, of patients facing life-threatening circumstances.
"Our current culture doesn't do very well with confronting things like death," he says. "To see someone else going through that can be very educational and can also prompt readers to reflect on those things themselves, and get to a more comfortable place."
Amy Kulp, a Carroll County resident, was diagnosed with Stage 2 breast cancer in April of last year. She had surgery in July at Greater Baltimore Medical Center and has since undergone a grueling regimen of radiation and chemotherapy treatments. She started a blog on a site similar to CarePages, called CaringBridge, soon after her diagnosis and gave detailed accounts of her ordeals, including all the emotional struggles.
"Most of my hair is gone," she wrote last September, after her chemotherapy treatments had begun. "It has fallen out mostly in the shower the last two days. I allowed myself a few grieving tears, but I am over it now."
Kulp says she was shocked at the kind of responses the blog got.
"It was set up with the intention of being convenient," she says, citing the ability to update a large group of people on her progress at one time. "But I found that I was getting a lot of support and encouragement, and people were writing things on there that, had I never had cancer, I never would have heard from them."
Kulp, who is deputy director of the American Association of Suicidology, says high school friends she hadn't heard from in 30 years found the blog and shared reminiscences of their childhoods and other friends publicly wrote about their own health struggles. For Kulp, who is active in her church, the sharing of faith was especially powerful.
"When people know that you're going through a rough time and you need to hear positive things, they're forthcoming," she says. "Whereas in day-to-day interactions, you wouldn't hear those heartfelt words from them."
That kind of broad support, from such a large community of people, was impossible before the age of the Internet, when only a limited number of people could be in regular contact with a patient. "It becomes this interactive, healing experience," says Cmar, who notes that, while studies haven't been conducted, patients who maintain blogs may experience more successful recoveries.
Amy Kulp, who is still undergoing radiation treatments, says it has definitely helped her.
"I'll be honest with you, this entire journey—from diagnosis to now—has been much easier than I anticipated it would have been," she says, noting how the blog has been an essential tool in her treatment. "I haven't had much to complain about. I have everything I need."
