Brave Battle: Brain tumor survivors hope to help others

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    At first, Ronald E. Hall, Sr. thought the mild headaches that began to creep up on him in the latter part of summer 2006 were the first signs of a simple head cold. They came, diminished, and returned, beginning a vicious cycle that never seemed to stop.  But by December of that year, the Detroit business executive and Real Times Media board member realized something was radically wrong when the headaches continued.

    An MRI confirmed a slow-growing benign tumor, a mass the size of his hand, was advancing on the right side of his brain just behind his eye.  Dr. Donald Seyfried, a celebrated neurosurgeon at Henry Ford Hospital in Detroit, advised the tumor was operable, but warned that his right eye and motor skills could be compromised.

    In February 2007, Hall had the delicate four-hour surgery to remove the meningioma from the frontal temporal area of his brain.  When the president and CEO of Bridgewater Interiors, an automotive seat manufacturing company, awakened, his right eyelid drooped and he wasn’t able to open his eye—yet he was thankful to be alive.

    “My first reaction was relief,” says Hall, a 69-year-old Detroiter. “I was still here; and seemingly in my right mind. They expected a full recovery for me, and the biggest relief is that they were correct it was not cancer.”

    Silently growing, brain tumors can affect anyone. And after looking at factors such as diet, social habits and environment, researchers still aren’t sure what causes them. The American Brain Tumor Association reports about 70,000 new primary malignant and non-malignant brain tumors, the kinds that begin and tend to remain in the brain and affect more children and older adults, will be diagnosed in the United States this year.  In 2013, about 4,300 children younger than age 20 will be diagnosed with a primary brain tumor, and 3,050 of them will be younger than 15.

    In 2010, the last year for which data is available, more than 688,000 Americans were living with brain or central nervous system tumors. And for every 100,000 people in the United States, 221 are living after the diagnosis of a brain tumor.

    LivingWELL Publisher Jackie Berg’s goddaughter Kaitlyn Berg of Novi was 13 when she discovered she had a brain tumor. Before her diagnosis and surgery in January 2011, she also was having headaches coupled with seizures that made it seem as though she had momentarily zoned out.

    “I was kind of shocked because I didn’t know what was happening to me,” says Berg, now a 15-year old Novi High School sophomore.

    Since then, Berg has endured a difficult journey to recovery. The tumor in the back of her head began growing again, and she underwent a second surgery, 30 radiation treatments and several months of rehabilitation. Surgery robbed her of some memories, such as how to add, subtract, multiply and divide. She could barely read, and her parents began a long battle to help her re-learn basic skills that were simple in elementary school.

    Even now, she must have another MRI every three months so her doctors at the University of Michigan’s C.S. Mott Children’s Hospital in Ann Arbor can check on her.

    When it comes to medical issues, adults often are more understanding than teens. She remains conscious about the scar in the middle of the left side her head, visible despite her long, brown hair, and her compromised speech and motor skills. Berg’s schoolmates didn’t know what to say or do, so many walked away from her.

    “I lost a lot of friends,” she says. “They didn’t know how to deal with me. Everything was different. You just feel different from everyone else.”

    Her mother, Lynn Berg, says she would have rather taken on the brain tumor herself than to see her young daughter suffer.

    “I just did what I could to help her through, especially with the school work and trying to deal with the kids. She would come home from school upset about the things that happened, and I tried to run interference with teachers and other parents when I could,” recalled Berg.

    May is brain tumor awareness month, and although she doesn’t enjoy talking about her experience, Kaitlyn Berg is speaking out to help people learn more about the frightening masses that can develop in people’s brains. Along with her mother, Lynn Berg, and father, Larry Berg, and Aunt Jackie Berg,  her team has raised $12,000 for the upcoming “Breakthrough For Brain Tumors Ypsilanti 5K Run & Walk,” exceeding their $10,000 goal.

    The family also wants to help people become aware of the assistance and support the American Brain Tumor Association provides for people who live with the 120 types of brain tumors.

    “When people started finding about our situation, it was literally every few weeks or so that we started to hear about more and more people who have brain tumors,” says Larry Berg, the vice president and general manager of Valassis, a large marketing firm in Livonia. “We started to hear about other people who have them, and you never heard about these things before.”

    Lynn Berg believes the lack of awareness about brain tumors is part of what made life so difficult for Kaitlyn.

    “Most people don’t really know someone with a brain tumor. It’s not common,” she says. “Just that alone made it really hard for people to relate to her, and in some cases even us. The more awareness that is out there, about how many people it affects, the easier it is for people to relate to others when they are diagnosed and you aren’t treated like an outcast, I would hope.” 

    Editor’s Note: The American Brain Tumor Association’s Breakthrough For Brain Tumors Ypsilanti 5K Run & Walk is slated for Saturday, May 11. To donate funds in support survivors like Ronald E. Hall, Sr. and Kaitlyn Berg visit: http://goo.gl/UXRhc 

     Stage Presentation: 8:30 a.m.

    Run Start Time: 9 a.m.

    Walk Start Time: Immediately following Event ends about 11 a.m.

    For more information about the walk or to form a team, contact Michelle Gramza at 773-577-8762 or mgramza@abta.org. To learn more about brain tumors, visit the organization’s website at http://www.abta.org.

     

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