Isabelle Wagner of Sunnyvale is one of those patients. Five years ago a new treatment protocol at Lucile Packard Children's Hospital at Stanford saved her life. Now, she is celebrating her seventh birthday.
Isabelle is a bright, vivacious first-grader.
"She loves climbing trees, she loves running around," said father, Derek Wagner.
"She's really creative and active and social and friendly," said mother, Heather Wagner.
A remarkable turnaround from five years ago when she was diagnosed with brain cancer. Her parents had known something was wrong.
"She stopped saying things like da-da," said Heather. "She didn't have a lot of words and she started losing the couple words that she did have."
Dr. Paul Fisher, chief of neurology at Lucile Packard Children's Hospital, recommended a new approach for Isabelle after her tumor was removed.
"The thing that was different about her treatment was that she received a novel treatment protocol where she got less radiation, where only the back part of her brain was radiated, and not the whole brain and spine, and chemotherapy was swapped in," said Fisher.
For Isabelle, it was a much less toxic, targeted therapy that minimized the long-term effects that often come with treating cancer in children.
"There aren't a lot of companies out there that develop drugs specific for a child with cancer, so you use hand-me-down drugs that may not be the best thing to go with the tumor in that particular child," said Fisher.
Fisher points out that it's simply not a big enough market for drug companies. Federal funding is lagging as well. The National Cancer Institute spent almost $193 million in pediatric research in 2009, just a fraction of its nearly $5 billion dollar budget.
What's considered a successful treatment of childhood brain cancer can still cause serious disability. The radiation that kills the cancer can also cause brain damage and problems with other vital organs.
"It's almost penny-wise, dollar-foolish not to do more research because the cost long-term for these families and society is huge," said Fisher.
"It was really clear early on that there is a big difference between the adult world when it comes to cancer and treating it and options, and the pediatric world," said Derek.
But the Wagners know they are among the fortunate in their fight against brain cancer.
"I think we got blessed in the sense that she kind of seemed made for the treatment that we got," said Heather.
And five years later, she's cancer-free and loving life at age 7.
This weekend the "We Can" Pediatric Brain Tumor Network is holding a fundraiser. To take part in the event or to make a donation, click here.
