CaringBridge starts national conversation on 'How We Heal'

Eleven-year-old Gavin Pierson has lived through more surgeries than birthdays. The Ramsey boy endured 27 surgeries for a brain tumor he defeated in an epic six-year battle fought with lasers, scalpels, experimental drugs and his own relentless optimism.

Now Gavin is one of the poster boys for a new campaign by CaringBridge called "How We Heal." The campaign, launched by the Eagan-based nonprofit social network for families and friends facing health issues, blends science and storytelling.

CaringBridge also is partnering with the University of Minnesota to research how its website can affect health outcomes, with the aim of sparking a national conversation on healing. Researchers are trying to better understand healing and even quantify it a bit.

"How does our service help drive potential health outcomes? We are at the right time to be exploring that question," said CaringBridge CEO Liwanag Ojala.

It's the latest evolution for CaringBridge, one of the first internet social networks when it was founded in 1997 — predating even Facebook — and now part of a crowded marketplace of for-profit competitors.

It continues to stand out because of its focus on health and now healing, its zealous protection of personal information — nothing is sold to other companies — and its no-ads, nonprofit status, Ojala said.

CaringBridge has 670,000 individual sites and logs 30 million visits annually. The nonprofit has 39 employees and an $8 million annual budget, with 90 percent of its funding coming from individual donors.

"One of the beautiful things about CaringBridge is no one is confused about what it's about. It's the center of a health journey," Ojala said. "In this world of divisiveness, we are still pure and centered on the patient and the caregiver."

Mary Jo Kreitzer, founder and director of the Earl E. Bakken Center for Spirituality and Healing at the U, said it was unusual for a nonprofit like CaringBridge to partner with a major research university. But the collaboration makes sense.

"Relationships are very core to healing," she said. "Social support is very connected to healing and well-being. I see CaringBridge as a powerful intervention."

In one study, a team of health professionals and computer scientists used one of the U's supercomputers to analyze 15 million journal entries on CaringBridge in a search for common threads to better understand how people use the site.

In another study examining how gratitude affects healing — by counting your blessings, for instance, or writing down things you're grateful for — researchers surveyed 782 CaringBridge users.

"We found the gratitude practice is a useful tool," Kreitzer said.

Many people start their CaringBridge sites soon after getting a troubling diagnosis. They use it to communicate updates about surgeries, treatments and procedures in a fast and easy way. "It's an anxious time," Ojala said.

That critical function will continue. But CaringBridge also has become a place that people turn to for emotional support and connection, a place to spell out thoughts and fears, and to celebrate recovery milestones. That's what the "How We Heal" campaign is all about, Ojala said.

"This is a perfect way to showcase the different uses of our site and the different healing journeys people have," she said.

One of the first lessons CaringBridge staffers learn is that people often start their healing journey by making the intellectual and emotional decision to recover.

Another revelation, Ojala said, is that healing "looks very different to a lot of people whether it's through prayer, or animals, or natures, or propelling good in the world."

As part of its campaign, CaringBridge is profiling 20 inspirational healing journeys with photos, articles and videos. One of those profiled is Gavin.

Sitting at home with his parents, Nicole and Steve Pierson, Gavin shared his journey from diagnosis at age 5 to dancing and eating cake on the national TV show "The Doctors." Nicole used his CaringBridge site, visited more than 600,000 times, to document his recovery and connect with family and friends.

But she also found healing herself through writing entries for the site, which she has now turned into a book, "Be Strong and Brave."

Gavin's aunt, who is a doctor, first noticed at a birthday party that his eyes were not tracking correctly. He was diagnosed with a germ cell tumor in the center of his brain that had probably been there since birth.

Doctors ordered chemotherapy to kill the cancer cells, but what was left of the tumor started to grow rapidly; at its peak, it was the size of a peach.

They then performed five craniotomies, removing part of Gavin's skull to cut out the tumor. But they couldn't get it all and the tumor kept growing back. Each craniotomy posed great risk; one time, Gavin lost his understanding of speech, so the family learned sign language until he relearned that skill. Another time, he lost his short-term memory for a while.

"He wanted to know everything. We gave him all the information and he used that to fight," Nicole said.

At one low point, Gavin's surgeon — fearful about the effects of multiple brain surgeries — asked Nicole if they wanted to continue treatment.

"Gavin said, 'Mom, Dad, don't give up on me. I'm gonna make it,' " Nicole recalled. "It was our son pushing us."

Undeterred, she found a new drug by Pfizer that promised to shrink the tumor. It wasn't approved for use in Gavin's case, but Nicole persisted and Pfizer agreed to what is called "compassionate use."

It worked. The tumor — which Gavin had nicknamed "Joe Bully" — began to shrink, and lasers zapped what was left of it.

Gavin, now in sixth grade, ticked off some of the things that kept him going through it all: Skyping with his pet turtles while he was in the hospital, watching the Dude Show on TV, cracking jokes with nurses and doctors, earning his brown belt in karate and watching professional wrestling.

His words of advice for others facing down illness and disease? "Just keep fighting," he said. "Be strong. Be brave. Don't give up. You'll make it. I promise."

Shannon Prather • 612-673-4804