Battle for Awareness – Do Kids' Cancers Get Short Shrift?

March 31, 2010— -- Deliece Hofen is fed up with cancer and she's doing something about it.

After losing her mother to brain cancer and watching her 5-year-old son, Braden, go through round after round of chemotherapy and radiation for his cancer, Hofen herself was diagnosed with invasive ductal breast cancer five weeks ago and underwent a double mastectomy Wednesday.

But Hofen, of Olathe, Kan., is not down for the count. In fact, her battle with breast cancer has only made her more resolved to fight for better funding and awareness of pediatric cancers.

"My cancer has turned into a mission for Braden," she says, "because when I first got my diagnosis, I realized I learned more about my type of cancer in that first hour-long visit than we had been able to find out about Braden's cancer in two-and-a-half years.

"I want the same level of advocacy as we have for breast cancer for pediatric cancers," she says, adding that pediatric cancers are notoriously under-researched. "No children should go through this. And they can't speak for themselves, so we're doing it for them. "

In December 2007, 2-year-old Braden was diagnosed with Stage 4 neuroblastoma, an extremely rare childhood cancer that affects the nerves. He initially was given a 30 percent chance of survival, and after six high-dose rounds of chemotherapy, a bone marrow transplant, and a brief period of remission, he is now given only a 10 percent chance.

When the family set up a blog to update friends and family on Braden's condition back in 2007, "an army of people started following the story," says family friend Christine Barbour.

Hofen was a principal at the local Stanley Elementary School for eight years and the parents of kids she cared for wanted to give her support, Barbour says.

Over the years, the web of friends, supporters and others who had been touched by Braden's story continued to grow.

"We nicknamed ourselves 'Braden's Army,'" says Barbour, "and before we knew it, there were T-shirts and buttons."

A public relations person by trade and passion, Barbour felt that the Hofens' story needed to be shared and could be one of advocacy for the cause of pediatric cancer.

So when Hofen was diagnosed a few weeks ago, Barbour decided to extend Braden's Army to a larger audience. She created a Facebook page telling Deliece and Braden's story that garnered the support of more than 6,000 members in the first 48 hours.

Today, the group has 19,000 members and BradensHope, the Twitter account Barbour set up, has more than 800 followers after its first three weeks.

With the help of Barbour's social networking and organizational skills, the campaign is moving full speed ahead. The next event, set up by a Braden's Army supporter in Kansas City, is Braden's Race for Life and Miracle Mile, a road race scheduled for April 18.

As of Thursday, $12,000 in donations for the race had been raised for Braden's medical fund and "we still have three weeks to go," Barbour says. A golf tournament fundraiser is also planned for June.

Barbour's nickname and Twitter ID is "Pied Piper" (PiedPiperInKC), a fitting appellation, considering the work she's doing to spread the word about pediatric cancer.

"Sometimes, [all it takes] is a certain someone, a certain story to get the message out. I'm hoping that [through this effort] Deliece and Braden's story will be able to do this the way Deliece has wanted to for a long time," Barbour says.