Point of View

Getting behind brain cancer research

August 28, 2009 

— When my mother suffered an unexplained seizure in December 1990, my siblings and I pushed the doctors for a full diagnosis, until finally we were confronted with dreadful news: She had a brain tumor. Cancer. And it wasn't an easily treated brain tumor, but a glioblastoma multiforme, the deadliest.

Treatment began almost immediately. It included radiation, to be followed by chemotherapy. We kept her away from germs, asking friends not to visit at first and limiting her contact with the outside world. We took her to weekly treatments and made certain that all her medications were clearly marked and taken at their appropriate times.

Everything about the protocol, as her treatment plan was called, was experimental because there was no known cure for her type of brain tumor. We hoped for a miracle, but within two months she was experiencing difficulty with balance and short-term memory loss. Then her white blood cell count dropped dangerously low, and the doctors said chemotherapy was out of the question.

"There's nothing we can do," we were told.

Helplessly we watched as she finally required full-time hospitalization to allow for intravenous administration of the powerful drugs that no longer were effective when taken orally. Their only effect was to keep her comfortable as the inevitable happened. The tumor had to grow large enough to shut down her body's central nervous system.

It was a process that occurred ever-so-slowly over the next nine weeks. She lost her sight, her sense of taste and her desire to eat, and she finally went into that deep sleep of so many cancer victims. Such sleep is a blessing, to a certain degree, for regular, high doses of morphine make the patient less aware and can help ease the related pain.

When Sen. Ted Kennedy was diagnosed with a glioblastoma multiforme brain tumor in May 2008, my stomach dropped. I knew his prognosis all too well, but prayed for his and his family's sake that since my mom's death in 1991 enough advances had been made to allow a better outcome.

Yet treatment today remains much the same as nearly 20 years ago -- surgery, radiation and Temozolomide, a form of chemotherapy. The nonprofit American Brain Tumor Association, founded in 1973 to promote research and support patients and their families, reports that 12,000 people are diagnosed every year with this form of cancer. It is the most aggressive; only one in four of those affected survive two years.

Kennedy was well enough to speak at the Democratic National Convention two months after his diagnosis and surgery, and he made a number of emotionally triumphant appearances over the past year. But no amount of fame and access to the very best of health care can stop a disease that one physician has described as "a number of different paths and genetic alterations that lead to the same result."

As the end neared, Kennedy had to have known. I said that to my husband after hearing of the longtime public servant's letter to Massachusetts Gov. Deval Patrick advocating a new succession plan for his Senate seat. The expected outcome of a glioblastoma multiforme apparently came without some of the side effects that my mom suffered, for Kennedy appeared lucid and in better physical shape to the end, a true blessing for his family and friends.

What can we do now? I am writing a check to the ABTA to help further its dedication to the elimination of brain tumors. In 2008, it awarded more than $2.7 million to research fellowships, translational and project grants, medical student programs and epidemiology and causation research. In years past, researchers at Duke University, Wake Forest University and UNC-Chapel Hill's medical schools have been recipients.

For these men and women receiving ABTA funding, a ray of hope always exists that one day they will discover a successful treatment for this most common form of primary brain cancer. When that day comes, we won't be bidding early farewells to such notable people as songwriter George Gershwin, movie reviewer Gene Siskel, Broadway singer and actress Ethel Merman, former Republican National Committee chairman Lee Atwater, baseball pitcher "Tug" McGraw, journalists Vivian Sadowski and Eleanor Hope Newell Maynard (my mom) and, now, Ted Kennedy.

Suzy Barile, author of "Undaunted Heart: The True Story of a Southern Belle and a Yankee General," teaches English and journalism at Wake Tech Community College.

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