Coping with a health crisis, one click at a time

The leading sites have taken different paths to providing services. CaringBridge is a nonprofit business with a $2 million annual budget that last year relied on $1.6 million in donations, according to federal records. Mehring said it’s company philosophy to rely on users who appreciate the service to support it.

CarePages is a privately held business whose parent company, TLContact Inc., was acquired last year by Revolution Health. The site licenses 700 hospitals nationwide and accepts screened advertisements to support its work, Langshur said.

In October, the Langshurs, along with Mary Beth Sammons, published a book gleaned from patients’ experiences: “We Carry Each Other: Getting Through Life’s Toughest Times.”

There’s no question the patient Web sites have caught on. CaringBridge staff estimate that a new site is created every 10 minutes.

The Web sites are most active in the early weeks of an illness, but they remain useful after the health crisis has passed. Katie Pagano’s parents post about once a month, but since she entered remission, it’s mostly the life of a normal preschooler.

NBC VIDEO Making a Difference NBC's Jonathon Alter reports on an organization that is making it easier for families with sick members to keep in touch with friends and loved ones. Nightly News

“We truly believe we’re done with this and this is nothing but a speed bump on Katie’s road of life,” said Matt Pagano. “I know my little kid is not sick anymore.”

Lasting testament
When the outcome is not good, the Web pages can become an important memorial for those who remain — and a testament to the patient’s legacy.

That was true for Miles Levin, the Detroit teenager who gained national fame last year after he blogged about his experience with a rare pediatric muscle cancer. The 18-year-old chronicled his feelings and philosophies on a CarePages site that attracted some 25,000 followers.

“It meant absolutely everything,” recalled his mother, Nancy Levin, who has begun her own site. “Miles always said, ‘I’m not scared of dying; I’m scared of dying without an impact.’”

Months after Miles’ death in August, visitors continued to take comfort from his words. By the end of the young man’s life, his CarePages site had become a vehicle of mutual support.

“Miles found deep and profound satisfaction in knowing he had helped others,” Nancy Levin said. “It was his way of giving back.”

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