RAMSEY, Minn. - Six-year-old Gavin Pierson, a Ramsey first grader, nicknamed his tumor "Joe Bully." It was the way he perceived the fast growing mass, as the bully in his brain. He's had five brain surgeries in the past seven months.
Now, Gavin's family and doctors are taking on a bigger fight. They're asking the drug company Pfizer to offer him what is known as a "compassionate use" of a trial drug only tested on adults.
"If they could give us this drug, it could save his life and we would know as parents that we did everything we could," said his mother, Nicole Pierson, and father, Steve Pierson.
Gavin's tumor is known as germ cell Teratoma, a mass that started as benign, but then became cancerous as it grew near the brain stem, even after chemotherapy. Nicole Pierson says repeated surgeries are wearing on her son, evident in his slow recovery after his fifth brain surgery this week.
"We had to hear from our surgeon he doesn't think he can get it all out and that was really hard to hear, so we felt helpless, well, we just can't give up on Gavin. He never gives up," said his mother.
Now, thousands of people have been inspired to fight alongside him, signing an online petition to plead with Pfizer.
Gavin's team of oncologists at Children's Hospitals and Clinics say a Pfizer trial drug known as CDK may shrink this type of tumor. It's shown to inhibit a protein found in tumor cells and has been tested in around 200 adults, some with similar tumors. But, it is not approved yet and hasn't been tested on children.
Last year, Pfizer said they couldn't make an exception for Gavin, without knowing the risks of a pediatric dosage. But now the Piersons, along with Gavin's doctors, are asking again.
"I think we don't have many other options and I think we are going to come to a point where surgery will cause more harm than good," said Dr. Anne Bendel, a Children's Hospital Pediatric Neurooncologist.
She believes the drug could be Gavin's best chance, and after working with drug companies in similar situations for other patients, she's optimistic Pfizer will come through.
"They usually are open to helping children like Gavin, and if we show we haven't been able come up with a solution, this is our best chance, and if the family is aware they know the side effects and are willing to take risk, than usually we can get approval, but until we jump through hoops we don't know," said Dr. Bendel.
Bendel says Pfizer has requested Gavin's tumor be tested for the retinoblastoma protein found in tumors, and those tests are currently underway at the University of Pennsylvania. If the test is positive for the protein, Gavin could be considered a better candidate for the drug.
Pfizer told KARE 11 patients are a priority, and the company understands the urgency in the situation, working with Gavin's doctors to determine whether this drug, known to them as PD-0332991, is a potential treatment option.
"I assume they work there to try to make a difference in the world to save lives and this is there opportunity to do that and Gavin's life is worth being saved," said his parents.
Even struggling after his latest surgery, he's still the kid who bravely stands up to his bully.
"I love anybody who loves me and my family," said Gavin, in a phone video taken from his hospital bed.
Follow Gavin's fight on CaringBridge here.
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