'You don't even have to explain'
Jan 08, 2015 09:41PM
● By Kerigan Butt
By Richard L. Gaw
When asked what she enjoys most about the many National Brain Tumor Society walks she has attended, Kristina Knight, the foundation's director of marketing, does not hesitate to reel off a few images that depict families, couples, friends and communities locked in harmony.
"These walks are an incredibly powerful and emotional day," Knight said from the foundation's headquarters outside of Boston. "I think the most exciting thing for me is to see that it brings together a large group, all of whom have been affected by brain tumors in one way or another. Living with a brain tumor and fighting for your life can be an isolating disease, but when you are here, everyone gets it. It's cathartic and it's the biggest support group you'll ever be a part of."
Currently in the United States, 700,000 citizens are living with a brain tumor diagnosis, and every year, 70,000 more are diagnosed. It does not discriminate on the basis of age, gender or ethnicity, and owing to its complexity, there are 120 known types of brain tumors. Knight said that federal funding for brain tumor research has flatlined in recent years, but through an advocacy team numbering more than 15,000 people, the foundation's Head to the Hill efforts have continued to push for federal funding.
"Part of our efforts are focused on integrating public policy programs, in order to understand what needs to be done, to earmark timelines for new treatments, and determine what decisions need to be made," she said.
Although Knight said that while there has only been small steps toward a cure for brain cancer, that the United States has seen a rise in the number of brain tumor research centers in recent years, which has led to increased research.
"There are incredible things going on in science, and fields of study have been emerging, which has yielded incredible amounts of data," she said. "We are learning to look at the entire system of what's feeding these tumors, including the potential environmental impact. Finding a cure will not just be discovering one miracle drug, but through different solutions triangulating together.
"We are in an unprecedented time of new breakthroughs," Knight added. "We're truly at a turning point, and our goal is to get the funds to do the things we want to do, in order to help those whose lives are affected."
Although the bulk of what she does takes her to boardrooms and meetings, it is during the fundraising walks where Knight sees the work of the foundation at its clearest. "To see people honoring and remembering their loved ones or celebrating with survivors, everyone knows that they are among wonderful people who get it," she said. "You don't even have to explain."
The following pages are dedicated to two Middletown residents -- Karen O'Brien, whose fight to overcome the loss of her husband Chris has become nothing short of a crusade in his memory; and Stephan Francisco, an active 28-year-old who survived a brain tumor diagnosis and 27 months of chemotherapy -- when he was just two years old.
Chris O'Brien of Odessa was nearly invincible, and his love of life was surpassed only by the love he had for his wife, his family and his friends.
When Karen, the woman who would become his wife, first met him, she was a recent graduate of the University of Delaware and had taken a teaching position in Maryland. She joined the local gym, and there, standing behind the desk ready to take her on a tour of the facility, stood a handsome man with a huge smile on his face. After the tour, Chris O'Brien waited for her, and right then and there, he asked her out for a date.
"I learned he was Irish and that he was from a big family, and he spoke so spoke lovingly about his parents," Karen said recently. "After about an hour with him, you could say that I fell in love with him. For all of the things I was looking for in a life partner, he was answering them."
By that October, they were engaged, were married the next August, and for the next 19 years, they lived in Odessa, where they raised three children. Whenever Chris was not at his job at State Farm Insurance in North Wilmington, he was actively engaging in the pursuit of enjoying life to the fullest, whether it was with his children Sarah, Brendan or Colin, with Karen, hanging out with his State Farm buddies, or with his family in New Jersey. He golfed. He went to the gym every day. He took vitamins. He ate healthy foods. He rode in bike challenges. He ran 5Ks. He played pick-up basketball. If he had a sinus problem, he didn't reach for medication. He'd simply sweat it out in the sauna at the gym. He was the strong arm of the family, the provider -- the compass by which the O'Brien family moved.
"He used to say, 'It's just another day unless you celebrate it,'" Karen said.
In April 2008, Chris began complaining of headaches, which concerned Karen because her husband rarely complained of anything. He and Karen went to Christiana Hospital for consultation, and then to Johns Hopkins in Baltimore for more testing. The doctors sat he and his family down. Chris O'Brien was diagnosed with a brain tumor. Radiation and chemotherapy began immediately.
"There was absolutely no doubt in Chris's mind that he was going to beat this thing," Karen said. "He was so ready to stare it down and defeat it. In fact, he and his brothers and his father took a train trip to Montana, right during the middle of his chemotherapy and radiation."
By the next year, the diagnosis was clear -- and for the nearly the next two years, there was no further evidence of cancer. Chris had fully regained his health and in the process, had created a clear path to the rest of his life.
On a November 2010 trip to New Jersey to celebrate his father's 80th birthday, Chris told Karen that he wasn't feeling right, and that he didn't feel like himself. The next morning, he woke her up in their hotel room in Brick, New Jersey, and said, 'You've got to take me to the emergency room.'
After a few more tests, what they feared most had come back. The diagnosis had returned.
On January 3, 2011, he underwent brain surgery at Johns Hopkins. The doctors removed more tumor that had formed. As soon as Chris got sick the second time, his parents moved from their home in New Jersey into the Odessa house. Her sister-in-law wrapped herself around the family. She had a calendar of Chris' brothers posted in the house, detailing which brother at which time would be the one to drive Chris to his appointments. In those catastrophic months of hospital visits, medications, waiting and worry, Team O'Brien -- Team Irish -- had formed.
Several members of the O'Brien family accompanied Karen and Chris to the brain tumor center at Duke University for more diagnosis later in the year. There, the doctor looked Chris straight in the eye. “It's bad," he said. "You have a grade four glioblastoma.”
"How much time?" Chris asked.
"Best case scenario? Twelve to 15 months."
Nearly without hesitation, Chris stood up from his chair. "All right," he told the doctor. "Let's go. What are we going to do about it? Tell me what I have to do to beat this disease?"
In June, they talked to the top doctor in radiation at Duke University, who advised them that Chris should stay in North Carolina for an entire week of testing. The prognosis continued to be poor, and the life in his eyes -- the eyes that first drew Karen into the world that she eventually had with Chris, the one that told her of promise, slowly began to drain away.
In August 2011, Karen and Chris decided to spend two weeks in the Outer Banks of North Carolina. Family came. State Farm people came. His friends and family were all around him. The medications went with him.
By Labor Day, Chris said to his Karen, "I think I am ready for Hospice."
Karen moved Chris from the bedroom into the family room. There, he stayed in bed, and visitors were constant. Many decided to spend the night by his side. On the last day of his life, he woke up. "Give me the morphine,” he told his sister.
On October 13, 2011, there were 15 people gathered around Chris O'Brien. Everyone took their turns saying goodbye, including Sarah and Brendan. There was a brief moment when Chris was alone in the room. There, then, at about two-thirty in the afternoon, he took his last breath. Karen then met Colin in the driveway after he got home from school.
Chris O'Brien was 48 years old.
"I lost my partner in life," Karen said. "He was the leader and we were the four little duckings who walked behind him. It took the wind out of my sails to have him gone. I took more responsibility when he got sick, but once he was gone, my biggest fear was, 'Who was going to take care of me?' The pain, the loss, it never ends. The world looks at young widows differently. To have to go from 19 years of marriage to all of a sudden being a widow at 46...”
Since 2009, Karen has led Team Irish -- easily distinguishable in their shamrock logo t-shirts -- at the Delaware Brain Tumor Walk in Wilmington, not only to raise funds for the National Brain Tumor Society, but to honor the memory of her husband. About a month before this year's event, Team O'Brien had collected over $5,000 for the foundation.
"In 2009, Chris walked, but in 2010, he didn't want to be a part of it, because he thought he was fine," Karen said. "In 2011, when he was sick, he walked the entire two-and-a-half miles. After Chris passed away, I knew I wasn't going to give up. The next year, we had 110 people and last year, we had over 75 people walking."
One of the many pleasures of Chris's life was to go golfing with his State Farm buddies on Fridays. In keeping with his love of the sport, Karen kicked off The Chris O'Brien Invitational golf tournament in 2011. Now in its third year and scheduled for June 23 at the Deerfield Golf & Tennis Club in Newark, the tournament has already raised over $10,000 in support of the National Brain Tumor Society.
"Chris always gave back and reached out," Karen said. "When he became sick, I needed to find somewhere where I could help. This way, I can help bring awareness to the disease, and at the same time keep my husband's memory alive. I know I can help people in some small way."
'Nothing slows me down'
Stephan Francisco of Middletown can bench press 250 pounds.
He spends a lot of time at the local YMCA, and he knows how all of the equipment works there because for several years, as a fitness instructor, he would teach members the proper way of working with the machines. He takes his dog Toby on long walks. He enjoys fishing, and occasionally, he takes the family boat out for leisurely rides on nearby ponds and lakes. In short, at the age of 29, Stephan Francisco cannot slow down.
And yet, directly into the face of Stephan's full life is the the distant but lingering memory that happened to him 27 years ago.
In 1987, when he was barely two years old, he was diagnosed with a brain tumor.
The pain began when he would wake up in the middle of the night screaming from severe headaches. He was told by his parents later that when he woke up, he could not recognize them. During the Easter season, his parents took their young son to a neurologist, who located a tumor on his brain. He was given only 24 hours to live.
Although his memory of that period of his life is fuzzy, Stephan was later told that the experience of getting back to health was an agonizing ordeal, not only for Stephan buthis entire family. After being diagnosed, he was unable to walk for six months, because the steroids had doubled his weight. He had shunts placed in his head to relieve the pressur of the tumor. His tumor was inoperable and rested on the optic nerve of both eyes. While he was undergoing chemotherapy, he became the first pediatric patient in Delaware to receive the port-a-cath, a small medical appliance that is installed beneath the skin, where his chemotherapy was administered.
"I went through 27 months of chemotherapy and then12 months of steroids, and just the act of getting a vein to pop on a two-year-old was absolute torture on my parents," he said.
Eventually, Stephan was diagnosed as cancer-free, but rather than succumb to the memory of the disease, he actively chose to live his life in the opposite direction. His parents never looked at their son as disabled. He was a pitcher on his Little League team. He was a shot-putter on his high school track team. He bowled. He was named to the Who's Who of High School Students. He later received a degree in Business Administration from Goldey Beacom College, where he was named to the Dean's List and the National Honor Society.
While Stephan was in treatment, his mother Cathy began organizing Christmas parties and picnics for children with cancer throughout Delaware, as well as started a brain tumor support group for parents whose children were facing the disease.
"Stephan is a fighter, and no setbacks with either his medicine or his shunts would hold him back," she said. "He excelled in school and through college, even though he is visually impaired. He is always the person to pick other up when they are down. He is a true inspiration to others."
"I've gotten used to it because I grew up with it," he said. "The only thing I have a problem with is my balance and my vision. But I chose not to let it hold me back. Granted, I do things in a modified form, but I never let the brain tumor stop me. I just chose not to let it get me down and hold me back."
For the past several years, Stephan has devoted part of his time to volunteering for the National Brain Tumor Society. He prepares mailing materials for the Society. He visits high schools to inform students about the Delaware Brain Tumor Walk, where he has become a very familiar face. His most important role, however, is simply talking to others who have been impacted by brain tumors.
"I look at my job now as being someone who can help other people get through it," he said. "Yes, there have been moments in my life when I have wondered, 'Why did it happen to me?' just like everyone who is diagnosed does. But far more often, I think of it as, 'How can I help other people get through it like I did?' It's good for them to talk to a survivor. It gives them hope."
Recently, Stephan attended the kick-off gathering for this year's Delaware Brain Tumor Walk. There, he met a woman who told him that she had been diagnosed with a brain tumor. She told him that she was now on her last round of chemotherapy.
"She told me that it is great that I did not let my illness slow me down in life," he said. "She called me an inspiration to her."
To contact Staff Writer Richard L. Gaw, e-mail firstname.lastname@example.org.
3rd Annual Chris O'Brien Invitational Golf Tourney
to benefit the National Brain Tumor Society
June 23, 2014
Deerfield Golf & Tennis Club
For complete information, visit www.PlayTheOB.com.
Walk for the Cure
Delaware Brain Tumor Walk
April 26, 2014
Dravo Plaza at Riverfront
For complete information, sign up or make a donation, e-mail DelawareWalk@braintumor.org, or visit: http://events.braintumor.org/delaware-brain-tumor-walk/