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An Eagle Creek woman raises brain tumor awareness in honor of her niece

Brewsaugh shares the story of her niece's heroic battle with brain cancer in Goodbyes Before Youre Gone


by: CONTRIBUTED BY CHRISTY BREWSAUGH - Shannon OBrien“Anything I can do to keep Shannon’s legacy alive is a great comfort to me,” said Christy Brewsaugh in reference to her beloved niece, Shannon O’Brien.

O’Brien died after an 18 year battle with brain cancer in June 2012.

Brewsaugh, an Eagle Creek resident, has found solace in sharing the story of O’Brien’s bravery, grace and activism for brain tumor awareness and research.

Brewsaugh has shared O’Brien’s story in the recently published "Goodbyes Before You're Gone," a book composed of the stories of 10 brain cancer caregivers and one woman’s story of her continued struggle with the disease.

The self-published book is available on Amazon. All proceeds are donated to the American Brain Tumor Association.

O’Brien was diagnosed with oligodendroglioma in 1994 at the age of 26 after having a grand mal seizure. She had a grapefruit-sized tumor in her right frontal lobe.

Despite periods of remission, O’Brien endured grueling treatments and surgeries and a tumor that kept coming back.

In 2000, after O’Brien’s first recurrence, Brewsaugh asked her sister Jan O’Brien, Shannon’s mother, what she could do to help.

She suggested that Brewsaugh use her Internet skills to research the disease.

Through her research, Brewsaugh came across an extremely supportive online community.

The first time Brewsaugh posted on a Brain Tumor site, a man welcomed her warmly to the group.

She found out later that he had lost his little girl to a brain tumor but he was still online helping others. “And that’s what the community is like,” Brewsaugh said.

Brain Tumor Treatments (groups.yahoo.com/group/BrainTumor-Treatments/), BrainTMR (braintrust.org/braintmr.htm) and Brain Research (groups.yahoo.com/group/brain-research/) were among the groups she found most helpful.

Through groups like these, people from all over the world can support each other and compare notes on treatments and disease history.

Brewsaugh shared that the groups are a wonderful place, “Just to find other people who are in the same boat and to share research and comfort each other and stuff like that.”

Brewsaugh heard about author Allison Rios’ idea for the Goodbyes Before You’re Gone book through one such email group.

In 2001, Brewsaugh and her niece attended a brain tumor conference in Florida. Renowned Cedars-Sinai neurosurgeon Keith Black informed the audience that brain tumor incidences are increasing and that the cause was unknown.

He admitted that current treatments for brain tumors were “barbaric” and that more funding for research was necessary.

Inspired by Black’s speech, Brewsaugh and O’Brien became brain tumor awareness activists. They were especially moved by his statement (which they reused with permission on a rally poster) that, “If we built one less bomber we could double the cancer budget.”

Brewsaugh and O’Brien lobbied legislators, held a vigil and a rally.

“The present treatments for brain cancer are not curative. We need new and better treatments. More funding for research. Legislation to improve the research system and to provide better access to care, treatment, and rehabilitation services for all brain tumor survivors,” O’Brien wrote on her Virtual Trials page.

O’Brien’s experiences and history with the disease are on the Virtual Trials site.

Brewsaugh explained that the site was formed with the idea that if everyone posted information about their experiences with brain tumors from diagnosis through treatment it would be “a way to pull a whole world of people into one trial and find treatments quicker.”

Since O’Brien’s passing, Brewsaugh continues to visit the online groups that gave her so much comfort.

“I just look at them all every day,” she said.

Brewsaugh’s chapter in "Goodbyes Before Your Gone" includes O’Brien’s story mostly in her own words.

Brewsaugh wrote the second part of the chapter to share O’Brien’s experiences after her disease had progressed to the point when she couldn’t write anymore.

Brewsaugh checked with Shannon and Jan O’Brien before publishing anything about Shannon’s experiences.

Jan O’Brien had been Shannon’s primary caregiver for most of the course of the disease.

“Shannon Patricia O'Brien was the light of my life. Shannon and I shared an unbreakable bond of love. She was such a bright spirit. Everyone who met her loved her. We were all devastated to lose this lovely girl, this bright star. My own sorrow, as painful as it is, doesn't even come close to the depth of sorrow visited on her mother Jan O'Brien and her twin brother Sean O'Brien. It is my hope, through sharing Shannon's story, to give Shannon's loved ones a little comfort knowing that Shannon's legacy -- her gracious generosity, her indomitable spirit, her amazing survivorship — will be widely remembered,” Brewsaugh said.

May is Brain Tumor Awareness month.



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