Family and friends are still fund-raising to help cover the costs of treatment for the Tualatin High School graduate
Isaac Wilcott has the utmost respect for his mother, Yoka. And she for him.
The 20-year-old college sophomore is living through a recurrance of a brain tumor. Yoka handles the planning of medical appointments and plane trips.
He trusts her completely. And to Yoka, Isaac is a walking miracle and the epitome of a strong man.
But whenever the conversation in their living room turns to expenses and fund-raising, Isaac shuts down. He sighs heavily and makes it known that the fund-raisers are all his mother's doing.
He sinks back into the family room couch with his eyes focused on the coffee table and his forearm, which has a tattoo of his mother's name, rests in his lap.
'If it was up to me, no, I wouldn't want any,' Isaac said later about fund-raisers. 'It makes it all reality again.'
At the age of 18, Isaac was diagnosed with a baseball-sized brain tumor. After surgery to remove it, he underwent therapy to learn to walk again. And against doctors' advice, a month later he walked without assistance across the graduation stage as a member of Tualatin High School's class of 2006.
He kept up his chemotherapy treatment even as he left home and attended his freshman year at Arizona State University as an industrial design major. But in June 2007, the tumor came back.
'It was devastating,' Yoka said. Even more devastating was the news that traditional chemotherapy treatment wasn't working.
Isaac is now enrolled in Blood-brain Barrier Disruption Treatment under the direction of Dr. Edward Neuwelt, a neurosurgeon at Oregon Health and Science University Hospital. Neuwelt, who first pioneered the treatment in the early 1980s, said that about 500 people have undergone the treatment.
BBBD, which uses a concentrated sugar solution to outwit the brain's protective blood-brain barrier in order to deliver chemotherapy drugs to brain tumors, has proven to do remarkably well, said Neuwelt, with anaplastic olgodendrogliomas, the type of tumor Isaac has been diagnosed with.
Neuwelt calls the blood-brain barrier - endothelial cells, which are packed closely together and line the walls of blood vessels in the brain and block the entry of various substances, including chemotherapy drugs - the Achilles' heel of brain tumor treatment.
'Very little is spent (by the federal government or big pharmaceutical companies) on getting to the nervous system,' Neuwelt said. 'It's frustrating.'
In 'Strategies for Advancing Brain-Barriers Translation Research,' a paper released Dec. 17 and co-authored by Neuwelt, the authors stress that in order to further research drug delivery to the brain, more training programs and funding opportunities for scientists targeting the brain barrier need to be established.
But Isaac, Neuwelt said, is responding well to the BBBD treatment. Once a month for a week, Isaac travels from Arizona to Oregon. He stays for four days at OHSU undergoing treatment. Then he returns to school. The one-year treatment will finish in June. This summer the hospital will continue to monitor Isaac for changes to the small tumor. And if it comes back, Isaac shrugged his shoulders and said, 'I guess I'll do it again.'
Isaac tries not to miss a beat. At a drop of a hat, he's ready to leave school to come home for treatment. A week later he returns and tries his best to keep up with school.
'It doesn't really affect me at all until my mom calls me and says my confirmation number has been e-mailed to me for a flight home,' Isaac said.
The treatment and the travel are expensive.
And while insurance covers some of the costs associated with Isaac's treatment, Yoka said it doesn't cover all of it. The family is still paying on bills from the first round of treatments Isaac underwent.
And his new treatment relies on medication not covered by health insurance.
'It's a lot. This procedure alone is quite spendy,' Yoka said.
Before Isaac was enrolled in the BBBD treatment he caught a glimpse of an estimate for the procedures.
'Well forget it,' Yoka remembered him saying. The cost is about $20,000 per treatment, which is mostly covered by insurance and includes the doctor's actual surgery. But that price does not include the costs of the four-day hospital stay or the services of the anesthesiologist. In total, the year-long treatment could cost as much as $300,000.
'But you can't put a price tag on it,' said Yoka. 'You sell your house, go bankrupt. Everything goes in order to make sure your child is going to be here.'
Local businesses, friends and community members have all donated money and time to the Wilcotts.
'Just amazingly enough, there's been enough money to send people's way,' Yoka said.
Yoka is working on a fund-raising basketball exhibition with the Harlem Comedy All-stars. The event has been tentatively set for April 12 at Tualatin High School. At the mention of this, Isaac leaned forward and said, 'This is all her by the way. I have nothing to do with this.'
'He doesn't want people feeling sorry for him,' she said.
Isaac noted that he's still far from enduring a life-threatening tumor. His tumor right now is less than 2 centimeters in diameter.
He shrugged his shoulders at the acknowledgement that the new treatment is difficult at times. In the hospital, the medication makes him queasy. Family members, including his father, Jeff, maintain a constant presence at his bedside.
And after a year-and-a-half fight with brain tumors, Isaac is still surprised by the people interested in his story.
'People seem to think I should start crying when I talk about it,' he said.
Most of his friends know his story. They asked early on about the scar on his head. So today when people ask, the answer is routine.
The same goes for breaking the news to professors about his need to miss a week of school once a month.
'I have cancer, and I'll have to miss some classes for treatments.'