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Fred B.

Fred B.

The Brain Tumor Network stopped us from stumbling along and navigated us to where we needed to go. BTN has remained a companion along the way, one with expertise that I am certain kept me alive. Perhaps tenacity and empathy best describe how they help patients plot a course beyond those life-changing words, “You have a brain tumor.”

Told by patient

The Brain Tumor Network is a gift that was there for me before I ever knew I would need them.  
 
In April 2017, we thought we had the years ahead of us planned. Our daughter was a junior in college, our son was a junior in high school, and my wife and I were approaching our 28th anniversary. We had every intention to work several more years and then retire on our terms. That month I experienced the one and only symptom that would lead to a brain tumor diagnosis. While at work, my vision suddenly flashed and included all the colors of a painter’s pallet, which appeared to melt before my eyes. That lasted about 15 minutes and was followed by a headache, but nothing severe.
 
A quick check with reputable medical references online indicated I should contact my eye doctor to see if I had a torn retina. I made an appointment and went to her office late that afternoon. Afterwards I felt fine and attended my son’s high school soccer game. My eye doctor wanted me to have further tests the next day, but she called me that night and told me to go to the Emergency Room and get checked for a stroke. There were no stroke indications but I had a CAT scan to rule that out. That scan revealed a “mass” or a “lesion.” Those were the first two terms in a new vocabulary that I would soon master as the diagnosis unfolded. An MRI verified a brain tumor. “Brain tumor” might be the most jarring words a person will ever have to process.
 
The Sunday after my diagnosis, the sermon in church included, “If you want to make God laugh, just tell him your plans.” Ours had certainly changed, and no one was laughing. An outpouring of love and prayers came from many places, as suddenly a whole new reality began for us. We were nevertheless stumbling without direction. Fortunately, having heard of BTN from a friend whose husband had a brain tumor, my sister pointed us in BTN’s direction and then came to help my wife and me while my brother worked with BTN to help find the right course of action. BTN answered the phone, returned calls, sent emails, investigated options, and kept my family updated. They worked on my behalf, just like motivated family members. BTN found a study that I qualified for, and helped me get into one of the top hospitals in the world. I believe my surgical, radiation, and oncology teams were the best combination possible. Fortunately all were located close to home and that has helped keep family life as normal as possible. Their navigation kept our family moving forward. Our daughter is now a medical student, our son attends a college that will lead to a military commission, and my wife and I just celebrated our 30th anniversary. God has smiled with us.  
 
The Brain Tumor Network stopped us from stumbling along and navigated us to where we needed to go. BTN has remained a companion along the way, one with expertise that I am certain kept me alive. Perhaps tenacity and empathy best describe how they help patients plot a course beyond those life-changing words, “You have a brain tumor.”
 
A goal was met in April 2019, two years after my diagnosis, when I visited the BTN office in Ponte Vedra Beach, where I was able to walk in, meet the behind-the-scenes heroes, and thank the BTN team for all they had done for my family and me. We will be forever grateful for BTN.