Patient blogs help some people find support

The Philadelphia InquirerJune 16, 2013 

— Kate Leong of Phoenixville, Pa., said more than 4.3 million visitors have come to her blog, Chasing Rainbows at www.kateleong.com, for the same reason people stop and watch a car wreck.

“When there’s a tragedy,” she said, “people need to slow down and look and stay a while.”

Leong, 43, is a gifted storyteller, and her accounts of her son Gavin’s life, and death, now draw 25,000 to 30,000 visitors a day. Her blog is raw, honest, and immediate.

She posted from the Intensive Care Unit April 11, at 2:30 a.m. after Gavin, 5, suffered a seizure and cardiac arrest. She took her younger son, Brian, 4, in to see him.

“I kept thinking – if Gavin does die, I want Brian to know that he said goodbye,” she said in her blog. “I sat him on the side of Gavin’s bed and he whispered in his ear. I don’t know what he said to his big brother, except I heard ‘I love you’ at the end. It ripped my heart in two.”

Responses poured in:

2:59 a.m.: “Can’t stop thinking of you and your sweet Gavin. Sending love (it’s total stranger love, but as I sit here with tears streaming down my cheeks, it feels pretty real to me).”

5:03 a.m.: “Being in Australia, I have been able to follow your journey. Keep the updates coming Kate as there is a whole world behind Gavin and you.”

5:05 a.m. “I can’t sleep and you are in my thoughts. Much love from the West Coast.”

After Gavin died April 14, Leong asked readers to donate to the child life team at Nemours/Alfred I. duPont Hospital for Children in Wilmington, Del., or to Gift of Life Family House in Philadelphia, where families stay awaiting organ donation. Each got over $13,000. At duPont, scores of baby dolls, rattles, books and whistles arrive daily.

“We’ve never experienced this magnitude,” said Alaina Norvell, who is on the duPont child life team.

Blogging from her kitchen, or the ICU, Leong never realized she was part of a revolution – the rapid proliferation of what are known as patient blogs.

Lisa Gualtieri, a professor at Tufts University School of Medicine, studied 250 patient blogs last year and published her findings in the Journal of Medical Internet Research.

Most blogs are read by few, and a few by many. Most bloggers fit Leong’s demographic: Caucasian, age 25 to 55, highly educated and predominantly female.

Gualtieri estimated there are tens of thousands of patient blogs, and disputed Leong’s contention that readers come to her blog to rubberneck. She found that readers of patient blogs are quite sincere, and come for inspiration and information.

“It’s an enormous audience, far beyond what most bloggers have,” Gualtieri said. “I think it’s wonderful if it helps her and she feels like her telling her son’s story has helped others.”

Kate Gallagher was a flight attendant and had nearly given up on motherhood when, at 34, she met Ed Leong on a flight to Puerto Rico in 2004. She never flew to Puerto Rico because her curly hair frizzed in the humidity, but a colleague begged her to switch, and there was Ed in first class on an upgrade.

Ed, now 42, graduated from the University of Pennsylvania and worked in IT.

Six months after Gavin was born, Leong was pregnant again with Brian, now a 4-year-old. Brian became Gavin’s greatest friend and teacher: Gavin would see what his little brother would do, and try to model him.

Leong had lost a set of twins, got pregnant with twins again, and lost one in pregnancy. Gavin, the other, was born Sept. 29, 2007. She has had a total of nine miscarriages and a stillborn daughter, Darcy Claire. She blogged through it all.

“Believe me when I say – there is nothing in this world worse than a silent delivery room,” Leong said in her blog.

Gavin had such poor muscle tone, doctors told Leong he would never sit up and never feed himself. Doctors eventually lumped his myriad of problems into a diagnosis of cerebral palsy, but Leong never accepted it.

‘Like an extended family’

In the first days, Leong set up a CaringBridge.org page to keep loved ones informed. More than 430,000 CaringBridge sites have been created since the website’s founding in 1997.

Leong grew to love posting daily updates.

“My writing has always been my therapy,” she said. “I know very well what can happen if I keep things inside. I kind of self-destruct.”

After a few months, she outgrew CaringBridge and created Chasing Rainbows.

“I do care about my readers, and in a way many of them have become like an extended family …” she said. “I’m grateful to have this platform, and over the years it has helped me find ways to help Gavin. And it helped me to help others.”

Leong’s blog and others like it are emblematic of another trend in health today – patients using the Internet to change the face of health care. This is known as patient engagement.

WEGO Health, an Internet home of 50,000 health activists at www.WEGOhealth.com, “estimates that there are well over a million health bloggers, and many more people using” social media, according to CEO Jack Barrette.

Involvement often goes far beyond blogs.

Breast cancer patients have an extremely active Twitter group, #BCSM, with weekly tweetchats on Mondays. Thousands of the world’s sickest patients share information on cures and treatments on www.patientslikeme.com .

The Internet and social media technology have unleashed the power of patients to change health care from the bottom up, Barrette said.

Some astonishing news

Just a week after a revealing April 3 post detailed her personal struggles, Gavin suffered his seizure and cardiac arrest. And by April 14, he was brain dead.

On her birthday – the day her son would be declared brain dead – Leong woke up in bed next to Gavin, knowing that she was pregnant. She could feel it. She was sure Gavin waited to die until Leong discovered she was pregnant.

She blogged, “Gavin has always been generous.” Leong believed that Gavin, a boy who never spoke, had used her and her blog to influence people, to help and inspire. Even in death: His family donated his organs.

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