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. "

Pediatric Cancer and the Pied Piper

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.

Living With Hope

Braden's story is a perfect case for awareness, Hofen says, because doctors found the tumor early on but didn't recognize that it was a tumor, never mind that it was a malignant one.

"They found a shadow and thought it was an enlarged liver due to a virus, so they missed it," she says. "My cry is that if the doctors aren't even aware enough ... to recognize pediatric cancer -- we have a problem. ... We need more awareness and better-funded research."

Pediatric cancer organizations echo Hofen's concerns.

"We are definitely the stepchild of cancers -- there is no question that it is totally underfunded," says Nancy Franks, executive director of the Pediatric Cancer Research Foundation.

"There is less federal money that goes towards research [than for other cancers] and the pharmaceutical companies are not willing to put out the dollars to support pediatric research because…there's not as much return on their investment," Franks adds. This, she says, means that it is predominantly up to the private sector to rally funds and research, but in the shadow of more prominent campaigns such as those for prostate and breast cancers, pediatric cancer doesn't get the attention it deserves.

And "unlike adult cancers that might emphasize prevention measures or early detection, we know that only research cures children's cancer," adds Laurie Ann Phillips, a spokesperson for the national adovacy group, CureSearch for Children's Cancer.

"I'm certainly not saying that breast cancer and prostate cancer aren't important to find a cure for, but the publicity out there is obviously with adult cancers because the adults become advocates. For pediatric cancers, the children need us to become advocates," Franks says.

This fact has become painfully clear to Hofen throughout her own breast cancer treatment. Compared with the plethora of treatment options and in-depth knowledge that she was offered upon her diagnosis, there is still painfully little known about Braden's cancer and many other pediatric cancers.

"I am so grateful to have had such great treatment for my cancer," she says, "but children and their parents need to have that same level of care and knowledge."

Hofen's advocacy comes with her own blend of maternal instinct, indefatigable hope, and "wonder woman energy" -- as her friends and family have termed it.

When asked how she copes with raising a child who might die at any time while facing death herself, she says that learning to live in the moment has been incredibly important for her sanity.

"As a parent, you always say that you'll treasure every single moment," Hofen says, "but we really take that extra 10 minutes -- we call them detours -- to do something special.

"Hope and believing in miracles has gotten me through every day," she adds.

And now, Hofen, her husband Brian, Barbour and all the other soldiers in Braden's Army are trying to pull off a miracle of their own.

While advocacy for pediatric cancer happens in many places across the U.S., there is no united front for it the way there is for breast cancer, Barbour says. With their advocacy efforts, they hope they are sowing the seeds of such a movement.

"These children can't necessarily speak out for themselves," Hofen says. "So they need us to speak for them."