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

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."

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