Marin Family Rallies After Brothers Struck With Rare Brain Cancer
MARIN COUNTY (KPIX 5) - There are more than 100 types of brain tumors. So when a North Bay family was told that both of their children had the exact same form of rare cancer it was both surprising and devastating.
Just before his 17th birthday, Spencer Greene had a series of seizures, which landed him in the ER, and a subsequent MRI of his head. This scan revealed a mass in his brain. Spencer said he then turned to the E.R. Doctor.
"I just remember asking, 'Will I live?" and he said "I don't know,'" recalled Spencer.
"There was this lemon sized mass in his left frontal lobe and three days later he had surgery", said the boy's father Brock.
Surgery confirmed the cancer called Oligodendroglioma or "Oligo" for short. Patients are told there is no cure and to expect to live 8 to 10 years with treatment.
5 years of treatment have also been filled with promise and more uncertainty: not only about his own disease, but what he couldn't see happening to his older brother Zach.
Two years after Spencer's surgery, the Greene's had taken a family trip to Mexico.
"And in the dining room, 3 hours into our vacation, my older son had a grand mal seizure, in Mexico," said Pam Greene, mother to the two boys. "We flew home, went to UCSF, and in my older son they found the same kind of tumor as my younger son."
Doctors said there are really no odds and no way of predicting what happened to Spencer and Zachary. There was no family history of this type of brain tumor in the Greene Family.
"It just felt like our family had the worst luck in the world," said Zachary.
The possibility and reality of both boys having the same type of brain cancer even struck UCSF neuroscientist Doctor Michael Prados. Dr. Prados has been treating brain tumor patients for 30 years.
"To have these 2 boys with essentially the same tumor, almost the exact same part of the brain, is in by experience quite, quite remarkable and very unusual," said Dr. Prados.
Zach had the same surgery as his brother and is now back at Columbia University where, as a graduate student, he studies astrophysics.
"There are deep reservoirs of sadness, fear and anger. They're there. They don't help you," said Brock, "You have to find a... You have to direct your energy at what's possible."
But the Greens found that no one's really funding Oligo research.
"You have no choice. You're either going to step up to the plate and deal with this or roll over," said Spencer.
And stepping up is what the Greene Family is doing:
"I'm sort of the "asker in chief' but the magic is all in the responses," said Brock.
Brock Greene put his marketing skills and contacts to work and created "Oligo Nation."
The goal of the group is to raise money specifically to fight this type of cancer.
"Because of him there's things being done. Because of him the money that we're raising and the research grants, I feel very hopeful," said Pam.
In less than 2 years, Oligo Nation and the National Brain Tumor Society have raised more than $1 million for research.
In June, research grants went to Harvard, and to UCSF.
"What he's done is provide funding that's going to help the next family and the next patient in addition to his kids. And to me that's remarkable," said Dr. Prados.
Unfortunately, time and treatment haven't yet been enough for Spencer.
The uncertainty and the tumor are back.
What has never left is the family's resolve to make a difference and possibly give more time to others. The Greene family wants to raise at least $1 million dollars a year for the next 5 years.
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