Participant Stories

Beth Rosenthal

In 1985, at age eleven years old, I was diagnosed with a benign brain tumor. I had two operations and received radiation treatment. Even though I was very nauseated and hiccupped almost nonstop, at the time I lived and breathed gymnastics. I practiced cartwheels and handsprings all spring and summer long. School was also a big priority. I was very proud that I was in the high levels and assumed that I'd go to Brown University, just like my parents did. All of that changed after my treatment, as now I was lucky just to walk. I also couldn't use my left hand and arm well and wanted to chop it off. I can hear my mom saying "No you don't, Beth," when I desperately wanted to. Twenty years ago benign brain tumors weren't discussed or understood. So much has changed in the world but, benign brain tumors still are still misunderstood.

Most people do not realize how devastating this diagnosis can be. It can affect the quality of your life, and can also be fatal. My dreams were certainly shattered after my surgery. I have not done a cartwheel or handspring since I woke up in the ICU in January of 1986. And everything from my education, to my career, to relationships, have been altered because of my tumor.

I tried to find other survivors of benign brain tumors but couldn't. Every search led me to brain cancer. I felt like I was up against a brick wall. So several months ago I started www.itsjustbenign.org, a website that connects benign brain tumor survivors and their loves ones to each other. Apparently there was a need because we have 120 members and are growing daily. Not only can we communicate online to each other, but we can create forum questions, discuss side effects, medications and other topics important to us.

The Have A Chance Walk has been crucial to my "coming out". My illness wasn't discussed in the '80's, and since most people didn't ask me how I was post-surgery, I felt like my tumor wasn't important. My mom was the only person who has been a true constant for my entire life. I'm alive because of her emotional support.

I NEVER spoke of my tumor as a proud survivor until I discovered the HAC Walk in 2006. Collecting donations was a life-changing moment in my life. At first I cried while speaking about the cause, but somewhere into my second year I started really started valuing my struggles. Have A Chance helped me find my voice. That's a big reason why I run my support group and website.

I continue walking for the many people who have inoperable brain tumors and to find better treatments for everyone diagnosed. If that small piece of tumor near my brainstem ever grows, my breathing and swallowing might be compromised. I don't know if I could receive more radiation and I'm not sure if I'd want chemotherapy. So I'm walking for myself, everyone else diagnosed with a brain tumor, and everyone who loves us.

Corrine Swineford

In spring of 2006 my mother Kathy Swineford, who never missed a day of work, suddenly could not stay awake for more than 20 minutes and complained of severe headaches. Several trips to the doctor left her misdiagnosed with dehydration, sinus infection, etc. Finally, the day after Easter Sunday, barely able to keep her head up, she went to the doctor and was almost sent away with more prescriptions, but he did suggest a CAT scan. The scan showed something in her brain, but they did not know what it was so they sent her to Millard Gates Circle in Buffalo. I had just flown back to NYC earlier that morning and my family called me with updates on what was happening. At midnight my father called me and said: “Your mother is having emergency brain surgery, she has a brain tumor they have to get out.” I fell to the ground and thought I'm not ready to lose my mother-how could this be happening? I flew home on the next available flight when I arrived, the hospital said I could see her even though it wasn’t visiting hours. Her head had been shaved on one side and surprisingly she looked so much better than she did when I was visiting at Easter. After spending five days in the hospital, she came home suffering only from short-term memory loss. We were told if the tumor was not removed when it was, she would have died in her sleep as she was slipping into a coma.

Following the surgery, she underwent six weeks of chemotherapy and radiation to remove what remained of the tumor. The tumor is now completely gone and the only thing that remains is scar tissue. As a precaution, she continues chemotherapy to keep the tumor from coming back. Today, she is a three-year Glioblastoma (GBM) survivor who spends her time volunteering at Rosewell Park where she received her treatments, teaches Sunday School and leads a mother's group at our church and is acitve in her brain tumor support group. After living through this I realized that many people still do not know the causes and the symptoms of brain tumors. My goal is to create an awareness and a better understanding of brain tumors and to help find a cure for this horrible disease. I am proud to be a part of organizations such as Have A Chance, who aim to get the word out about brain tumors. I am also happy to announce that my mother will be a check-in Captain for the 2nd year in a row at the walk and my aunt, grandma, cousin and boyfriend will also be at the walk volunteering.

Our family hopes to see you on October 18^th when Hope Steps Forward in Battery Park!

Alyson and Wendy Nash

It’s hard to explain, and worse to imagine, what to do and what happens when a loved one receives a terminal diagnosis. In our case, it was our mother Linda Nash, (affectionately called LN), a doting grandmother, great friend, a spontaneous, vivacious, FUN-NY, New Yorker who enjoyed all of Manhattan's cultural offerings.   On January 23, 2006, after weeks of exhibiting uncharacteristic behavior, she was diagnosed with a glioblastoma multiform, the most aggressive and deadly form of brain tumor. Doctors gave her a prognosis of six months, and advised not to operate. We couldn’t accept that finality. We couldn’t accept that our mom, who had always taken care of us and now needed us to care for her, would simply succumb to this disease. We were confused, angry and overwhelmed. Second, third and fourth opinions were sought.

After getting those other opinions, we went against her primary doctor’s recommendation not to operate and checked into Memorial Sloan Kettering so the Chief of Neurosurgery could "clean out the shmutz" as he referred to it. My mom appreciated that. The surgery was risky - any number of catastrophic outcomes could occur, but we knew that if we didn't go for the surgery, she'd never have a chance for additional quality of life. Fortunately the surgery was successful, so when she was finally released from the hospital six weeks later, and in between radiation and chemo treatments, we gained a few months of quality time during which we took a few trips together, she spent more time with her grandchildren, and generally had a good time.

But eventually the chemo and radiation took their toll, and the spirit of the lively woman with the outgoing personality and infectious laugh faded. Our mom became completely reliant on us and the incredible private caregivers who were with her 24/7.

Watching the chemo debilitate her, take her liveliness and beat up her body was too much. It was better to let her be then to subject her to more of this treatment that wasn't going to cure her anyway. So in November, 2007 she had her last chemo treatment, and in January, 2008 we brought hospice in to the apartment to ensure she was as comfortable as possible. She actually rebounded a bit, started talking more, was funny and engaging. But we knew it wouldn't last. She passed away on November 23, 2008, 34 months to the day of her original diagnosis. The loss is still surreal, yet so painfully real.

At the beginning of this long journey, we contacted the Brain Tumor Society to try and get answers and perhaps provide an outlet for our anger and energy. Through BTS, we met Dennis Roth and became involved with the organization he and his family founded, Have A Chance. Dennis was one of the kindest and most helpful people we would meet along the way.   He arranged for conversations and potential consultations with medical experts who could assist or shed light on a possible treatment. He translated complex conversations that we had with doctors into terms that we could comprehend. Other times, he would simply just lend an ear. Dennis provided indescribable comfort while the rest of our existence was filled with incomprehensible distress. His untimely death in 2007 impacted the worlds of all those involved with Have a Chance and the brain tumor community. He was a champion, and the Roth family’s loss became our loss as well.

We hosted a team "4LN" comprised of friends and family at the first Have A Chance Walk in 2006. The walk experience was somewhat cathartic while simultaneously uplifting and sad - basically a whirlwind of overflowing emotion, but it provided us a sense of security and comfort, so much love and sense of goodwill. A family relative who wasn't walking picked LN up from her apartment and brought her to the Seaport so she could "greet" us at the end of the walk the first year. We continue to walk each year, and can’t imagine not doing it. There is so much work that needs to be accomplished, so many 'fights' to win, spirits to raise, smiles to see and stories to share.

Until the very end LN kept her spirits up and her wonderful sense of humor in tact. We know these two attributes, along with the love and support that everyone showed, kept her going as long as she did. We know that we truly did the best we could to care for and protect her in her time of need. For as long as we can remember, our mom always said how glad she was that she had daughters. As we fundraise, raise awareness and walk with the Have A Chance community each year, our mom is with us every step of the way. We walk for her.

Howard Roth, Team Captain of J-Walkers

JBoys

We lost my nephew Jeffrey at the age of 32, in 2003, after suffering from a brain tumor. Upon his son’s diagnosis, my brother Dennis, with no medical background, began to research conventional alternative and nutritional treatments, to understand how to help Jeff with his fight.

In order for others to benefit from what was learned, he created Have a Chance, a charity dedicated to helping individuals and families impacted by a brain tumor.

At about the same time we lost my best friend of 40 years, Jerry Klein to the same killer. About a year ago, we lost another very dear friend Joan Blieberg.

Dedicated to Jeff, Jerry and Joan we formed our team, J – WALKERS. The Have A Chance Walk is a combined effort between Have A Chance and the National Brain Tumor Society, whose goal is to raise money for research and treatment that will extend and save the lives of people with a brain tumor.

We lost the driving force behind these efforts, my brother Dennis, 2 years ago. His wife Arlene, her daughter Jenifer and her son Eric, are continuing his work with Have A Chance and the Annual Have A Chance Walk to Fight Brain Tumors.

THIS IS A REALITY SHOW WE CAN ALL WIN! All you have to do is participate, form a team, walk, or join our team.

THIS IS WHY WE WALK!