Nov 12, 2012 12:07 PM
TUCSON - Learning your child is diagnosed with cancer is a life changing experience. But what if the doctors tell you it's a cancer you've never heard of?
A rare cancer even the doctors know little about. So rare in fact there's little or no money for research. They call them "Orphan Cancers"
Chase Lock has one of these rare cancers.
"One day he fell out of bed and he bumped his head and I took him in to the ER thinking maybe he had gotten a concussion," says Angel Lock, Chase's mother.
Instead of a concussion, doctors found something much worse.
"By that time, he had tumor the size of a baseball in his brain," says Angel.
The diagnosis? Choroid plexus carcinomas; an aggressive, malignant brain cancer. And it's extremely rare.
"Within 24 hours we were seeing a neurosurgeon."
Chase's family went into survival mode.
"And that included praying. That included a lot of research," explains Marc Lock, Chase's father. "And I think, starting to surround ourselves for battle if you will."
Treatments, for orphan cancers, are often controversial because so little is known.
The Locks did their own research.
"Not realizing that information, that we were arming ourselves, would be necessary to ultimately make decisions that were not being made for us."
Dr. Anita Mahajan, M.D. is Professor of Radiology/Oncology at MD Anderson Cancer Center in Houston. Dr. Mahajan is on Chase's team. She says there is serious lack of funding for research but that's not the only challenge.
"It's difficult to do a well designed prospective study where we're going to get a large enough group of patients to answer a scientific question."
And then there are the pharmaceutical companies.
"They want to look at developing a drug that's going to give them a profit margin. And usually that comes with bulk," Dr. Mahajan explains.
The prognosis with orphan cancers isn't always good but the Locks focus on hope.
You can learn more about Chase's story at his website www.lockinhope.org.