Linda Frevert’s story
Linda’s mother died at her birth, and she was cared for by her loving grandparents during her early years. This precious time taught her much and may have given her the purpose for her life – to help others. She graduated from nursing school and prepared for a career in nursing with her BSN degree. She married the love of her life and settled down giving birth to her two children, a boy and a girl. Life was perfect until early 2001, she suddenly became ill. As she relates about the early days before diagnosis with a brain tumor, she spoke of “waking up New Year’s Day, 2000, with a terrible headache, dizziness, could barely walk to the kitchen while holding on to the wall, getting very nauseous, and thinking…why do I feel so bad, I had nothing to drink last night!” After many doctors and dentist visits of various diagnoses over two months, a MRI was finally ordered, and the tumor was found on the very last slide at the bottom of the skull base, almost hidden. The neurologist found an epidermoid brain tumor on the CT scan.
After a consult in Kansas City, and later at Mayo Clinic, March, 2001, Linda still knew little about the epidermoid brain tumor. Suffering greatly with trigeminal nerve pain, Linda searched literature on the internet to find more concerning the epidermoid, finding very little. But within a week she found an obscure online email group that gave medical information and support about the epidermoid. She joined membership and found that she was not alone…this supportive brain tumor group had banded together to learn about the epidermoid brain tumor and to support others diagnosed. It was an international group from various geographical locations but with one bond…living their life going forward with the diagnosis of an epidermoid brain tumor. This early loyal group remains friends to this day.
Members posted their experiences good or bad. From their information, Linda realized that this brain tumor wasn’t just a tumor that could be easily removed, but a brain tumor that has to be dealt with over a lifetime. This brain tumor was a recurrent one for some patients and several members of this first organization had many surgeries leaving them with severe deficits. The death of the email group co-founder, Dr. Stephen Engle, at the time she joined had a huge impact on Linda with the realization that this tumor could cause death from complications of surgery. This small group encouraged members to search for a knowledgeable surgeon that had done this surgery more times at the CPA (skull base) location than other surgeons. The epidermoid being a rare skull base tumor is not seen often by local surgeons. At this time in the early 2000s, skull base surgery was not a specialty yet and surgery held many risks for those considering removal of the tumor. Today, it is a priority for a brain tumor located in the skull base to be excised by a trained specialized skilled skull base surgeon. Even so, skull base surgery still holds considerable risk for patients. Linda’s background in nursing created a more supportive environment than ever for this group, and she became a mainstay of the organization with her medical background and knowledge. She could no longer go back to a full time job in nursing, but she could ‘give her two cents worth’ as she often says, to members of this rare brain tumor group, Epidermoid Brain Tumor Society.
Life went on, not as before, but as good as Linda could make it. She had a few more consults throughout the years with skilled skull base surgeons suggested by this group, to possibly excise this rare brain tumor. With each consult, Linda’s decision not to have surgery was reinforced, as the tumor still was not growing. She began her journey as a watch and wait patient in 2001, and today, this journey has been over 18 years – a tremendous amount of time to live with symptoms of this brain tumor. She is most thankful the symptoms seem to have faded a bit over time.
As the small brain tumor organization grew, more and more members began seeing the need for research and outreach. And out of this need, in 2012, a core group of the early organization banded together to become a non-profit charity. The Epidermoid Brain Tumor Society was born to be able to give research the focus and priority as the main mission for the new EBTS group. An EBTS Facebook site was also launched at the same time to give support and awareness of the epidermoid. Facebook created tremendous growth for the epidermoid community.
As one of the core group, Linda became steadfast in her resolve to make this new internet organization, Epidermoid Brain Tumor Society, all it could be and it has become just that. Still a small group (the epidermoid is only 1% of all brain tumors diagnosed in a year) at over 1,000 members worldwide, the membership consists of many patients and professionals. Linda serves on the EBTS Board of Directors, and gives direction and guidance to the organization as President of Epidermoid Brain Tumor Society. This organization would not be today what it has become without her. Linda has used her time as a wait and watcher to be a productive member. She uses values from her early life and her education to support members of the epidermoid community. Her posts to members are full of empathy and caring along with her medical knowledge. Well done, Linda Frevert!
“At birth we are given two teachers. One is called Life and the other is called Time. Life teaches us the value of time, while Time teaches us the productive purpose of life”…Paul A. Adefarasin