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Welcome to the Brain Tumor Awareness Organization |
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About Us- |
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My husband was diagnosed with a brain tumor after suffering a grand mal seizure on the job. To be perfectly honest, I don’t think that “brain tumor” was anything that I had ever heard of anyone having...certainly not it’s effects. After my husband’s surgery and the doctor telling me that he only had 6 months to live, I felt totally helpless. The ICU waiting room at our local hospital had computers and the internet, and I went to work immediately to learn about my husband’s tumor type (then thought to be a GBM) and how I was going to save his life. This search went on hour after hour, day after day, night after night, for months. Every time I visited another organization’s web page, they only had part of the answer. I only had a clue to visit another site if there were a link to follow. In the coming months, it became difficult to keep abreast of all the news, treatments and trials across all these sites. Then I found THE list-The BRAINTMR list. Here was a community of brain tumor patients and their caregivers who unfortunately had been in the trenches a while but were always open and welcoming to the newcomers. I learned of The Brain Tumor Center at Duke University Medical Center and what treatments there were there. The list members had so much information to share and experiences to relate, so many are advocates and so much was being accomplished through their willingness and love offered through their online community. Keith’s treatment didn’t cause him as many side effects or as much fatigue as most brain tumor patients experience, we were lucky. However, the chemotherapy and steroids had made him impossible to communicate with much less manage our household and two small children. As desperate as I was to find the right treatment for him, the list became too much for me to manage daily as it had around 900 members, many of which replied as a show of support to one another outside of the daily topics posted. This had been the best resource online that I had found, the most up-to-date and most supportive, and I knew that if I needed an answer, I would find it on the BRAINTMR list. I had those days where I wished that there was one place that I could go and find everything that I needed. Now having lived through all the legal battles with his employer, his loss of benefits, COBRA, Medicaid, Medicare, credit card companies, the state tax office, the state retirement system, the IRS, Social Security disability, I knew that there had to be a better way to get through it all when you find yourself totally alone caring for a brain tumor patient. Just understanding and coping was a full time job and most of us have other responsibilities too. This gave me the idea to begin an online community that would network brain tumor patients and their caregivers together with advocates where information could be easily exchanged, managed and supported by more than just the one “in the fight”. Brain Tumor Awareness.org is the home for learning, advocating, sharing, supporting, and raising awareness. -Julie Houston President-BTAO With your volunteer efforts, this online community can save someone hours and hours of research and provide the comfort and support needed during this overwhelming time. The Brain Tumor Awareness Organization is a 501-c(3) non-profit organization. Your donations made to our organization are tax-deductible. |
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Helping others: Julie and Keith Houston, in their Dacusville home, found tools in their fight against brain cancer, and they want to make the journey easier for others. GEORGE GARDNER/Staff |
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Couple helps others fighting brain tumors |
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By Liv Osby In the weeks after her husband was diagnosed with a brain tumor, Julie Houston spent countless hours searching for information about the cancer, the treatments and how to pay for it all. The information was there, but in so many places. The struggle to find it, while caring for her desperately ill husband and their two children, added to her already crushing burden. So now that Keith Houston has recovered, the Dacusville couple has begun the Brain Tumor Awareness Organization, where patients can find all the information in one place. "It's just overwhelming," Julie Houston says of their experience, "which is why we decided that nobody should have to go through that." The Houstons' lives changed one June day in 2002 when Keith Houston, an emergency medical technician, collapsed from a grand mal seizure that signaled a growing brain tumor. After surgery in Greenville, which removed only part of the tumor, radiation was recommended, Julie Houston says. But fearful of side effects, they looked for other options and found Duke University Medical Center. There, Keith had more surgery and enrolled in a clinical trial of a new treatment fed to the tumor through a port in his head. Then, he underwent chemotherapy for another year. Now, the family, including Savannah, 13, and Ellis, 11, is about to celebrate his five-year survival mark. And Greenville oncologist Dr. Mark O'Rourke says Keith's done better than expected. "His cancer is in remission," he said. "Most people with this type of tumor don't live more than three years." Battling the cancer was tough. But there were other hurdles, too. Keith lost his insurance when he could no longer work. So Julie says she spent months struggling with Medicare and Medicaid to get disability to help pay the bills and to have his treatment covered. "People are falling through the cracks because they don't have access to this information," she says. Joyce Boyette, executive director of the Cancer Society of Greenville County, says the organization will go a long way to help brain tumor patients get the information they need. "It's so overwhelming in the beginning, it's difficult to hunt and peck your way through," she said. "This will be a tremendous service to those families." The Houstons are hosting their first brain tumor vigil on May 7. And Julie, 45, will meet with congressional representatives in Washington, D.C., next month as part of the Lance Armstrong Foundation's LIVESTRONG Day to discuss the struggles cancer patients and their families face. "I am excited about going because there is not one issue that we have not had to go through," she says. "Resources are out there. We just need to make sure they're tangible for South Carolinians." |