Survivor Stories
For those in need, inspiration can be found in many ways. Often times, reading a story that resonates with one’s own experience can help that person to not feel alone in his or her struggle. It can also show that things can get better. With that in mind, The Kelly Heinz-Grundner Brain Tumor Foundation (KHG) wants to support brain tumor patients by sharing survivor stories of tremendous courage, determination and perseverance. The vision is to create an oasis for those in the throes of battle – a place where they can find much needed inspiration to keep on fighting.
To read these incredible survival stories, click on their name. Feel free to send us your “survivor story”. Email us using the Contact Us button on the top right-hand corner of the page.
Wendy and Eric Stockwell
Wendy Stockwell
My name is Wendy and I am a brain tumor survivor. I am very thankful to say that I have been cancer-free for 15 years. I hope my story helps to inspire not only those who are facing this challenging disease, but also the people who have managed to beat the cancer, but are still coping with the physical and emotional scars that the tumor left behind.
I was only 12 years old when my odd symptoms first began. While I've heard that many people with brain tumors experience severe headaches and vision problems, my symptoms were very different. In the fall of my seventh grade year, I started experiencing a roaring sound in my ears followed by an inability to understand what people were saying
I never lost consciousness or "phased out," it just seemed as if people were speaking a foreign language. These episodes would occur for just a minute or two, and then I would slowly regain my ability to interpret what was being said. Looking back, it seems as if that should have scared me to death, but being only 12, I just dismissed the episodes and even became quite good at hiding them. Over time, it started happening more and more often.
Finally, that spring, a teacher of mine contacted my parents to express her concern about the changes she had seen in me over the past few months. Because she knew my older brother had epilepsy, she was concerned that I might have it as well. My parents quickly scheduled an appointment with my brother's neurologist, expecting a similar diagnosis. Though the EEG only showed one slight eurythmia, the doctor felt that further testing was needed. They then scheduled a CT scan followed by an MRI. I will never forget my doctor's face as tears welled up in his eyes, and he asked my mom to come out into the hallway with him. Much to her horror, the MRI showed a golf ball size tumor on my left temporal lobe. Being so young, I didn't fully grasp the seriousness of the tumor or how difficult and painful my recovery would be, but in two short weeks I would begin the journey that would change my life forever.
While the first days after the initial surgery were excruciatingly painful, the long term recovery and adjustment to my new life was by far the most challenging. Before all the craziness began, I was a happy kid with lots of friends, good grades and a passion for sports. I didn't understand the seriousness of how the tumor, and especially the surgery itself, would affect me. Since the left temporal lobe is responsible for short term memory, after the surgery I found myself unable to recall names, numbers and even what simple objects were called. It was frustrating, once being a tutor myself, now forced to see a speech therapist in order to remember what a chair is called! The challenges continued as we discovered that the brain trauma from the surgery also caused me to experience a new kind of seizure that was so painful I would be unable to move or speak for several minutes. This new seizure is very rare and actually triggers the area of the brain that feels extreme panic and fear. The first one I had I actually dropped to my knees because my brain was telling me I was petrified even though there was nothing happening around me.
Despite all of my new challenges, I was determined not to let the tumor run my life. My scholastic improvement took patience and commitment. The surgery didn't actually cause me to lose my memory, it just damaged my ability to retrieve what I already knew. Following the surgery, I saw two therapists specializing in memory who taught me how to use other areas of my brain to retrieve and memorize information. These sessions were tedious and often frustrating, but the work paid off and I was able to graduate from both high school and college with a 3.5 GPA. Though I am still terrible with names and I've given up trying to learn Spanish, I'm certainly not complaining!
My athletic recovery took determination, as well as a little creativity. Dissatisfied with my doctors' restrictions, we began brainstorming how to bend the rules without breaking them. The first conflict was that my doctor demanded that I wear a hard surfaced helmet if I insisted on playing sports. Of course, the athletic directors wouldn't allow me to wear a hard surfaced helmet because they said it would be too dangerous for the other kids. After numerous ideas were rejected by one side or the other, we were finally able to create a helmet that was accepted by both. The helmet was made of compressed foam rubber with an additional inch of urethane foam glued on the outside, protecting the surgical area. Between the odd looking helmet and my ponytail sticking out of the ventilation holes on one side, my teammates and I joked that it was a scare tactic against our opponents!
Looking back, it amazes me how supportive, patient and creative my family, friends and doctors were considering my determination (and sometimes stubbornness) to live my life the same way I did before. I was also deeply touched by the compassion of fellow classmates. Kids did everything from shaving their heads to making hospital bracelets the new fad.
But as thankful as I am to all of the people that were there to help me, there is no question that I would not have made such a miraculous recovery without the love and support of my parents. Despite my even having a grand mal seizure during a basketball game, my parents never stopped me from playing the sports that I love. I know that, even though their hearts wanted to protect and shelter me, it was their willingness to let me push myself and even let me fall that allowed me to recover both physically and emotionally.
Unfortunately, when I was 17 I was informed that the tumor had grown back, and they would have to do another surgery. I was devastated. Because I was so young when I was first diagnosed, my parents and doctors decided I would have a better recovery if I didn't know that the tumor could possibly return. Although I am now very thankful that they made the decisions that they did, at the time I was shocked and furious. Knowing that I had to face all of the pain and fear all over again was almost more than I could bear. But once again with the love and support of some very special people in my life, I underwent a second surgery and prayed for it to be the last.
It has now been 17 years, and though I have an occasional seizure and I will be on medication for the rest of my life, I feel that I am fully recovered. I know that I am like many survivors in that I am actually thankful to have been given this experience. As miserable as things were at times, the inner strength and perspective that it has now given me is irreplaceable. Feeling sorry for myself isn't an option, especially when I know how many wonderful people haven't been able to win this fight.
Though, medically speaking, I know very little about the cause and treatment of brain tumors, I do know that it is something no one should have to face alone. I strongly believe that attitude plays a big role in a person's battle and recovery when fighting cancer.
I feel that everyone who has been affected by this disease, whether directly or through a loved one, has a responsibility to spread the word about the signs and symptoms of brain tumors. In my experience, early detection is critical. What's more, my hope is that through the efforts of The Kelly Heinz-Grundner Brain Tumor Foundation we can all work together to educate, support and inspire those affected by brain tumors and reassure them that they not alone.
Tricia Brown
Tricia (left) along with her sister Dolores, at The Brain Tumor Society’s Annual Race For Hope 5K last summer — just four months after her brain tumor was successfully resected.
My name is Trish and I am a brain tumor survivor. I have been truly blessed with my prognosis, as well as the outcome of my treatment. I know many are not as fortunate. I read about The Kelly Heinz-Grundner Foundation in the local newspaper and contacted Chris to offer my support by sharing my own story because I believed it could be of great benefit to others dealing with this disease.
Before I do that, here is a little background about me. I was born and raised in Dover, Delaware. I have been married to my high school sweetheart for 25 years and we have two children. Our son, Gregg, is almost 16 and our daughter, Jenny, is 23. We also have twin grandchildren, Shawn and Kiara, who are now two years old. We are also the parents of one big, dumb, but beautiful Lab/Shepherd mutt named Shelby.
I was an extremely healthy person and did not get sick very often. I probably never even had a cold for over ten years. I do have high blood pressure, but it is controlled by medication. In August, I started feeling really bad-bad enough to call the doctor, which is rare for me. Initially, I had a multitude of symptoms that all came on at once, which really had me perplexed. I felt like a hypochondriac going to my primary care physician and relaying all of my symptoms to her. They included extreme fatigue, headaches, pulse racing, tingling in my arms and hands, occasions of vomiting, and my legs giving out on me resulting in my falling. I also had strange vision issues. When I would lie down to sleep, I'd see the most brilliant color blue. During my waking hours, my vision was blurry, with constant visions of "stars" or "sun spots" everywhere.
My first doctor’s appointment was in August. As she listened to all of my symptoms, she ordered a round of blood work to check for anything abnormal. When I returned for the results, they were all normal. My doctor then referred me to a cardiologist, at which time I obtained a 24-hour monitor to wear to record my pulse rate and any other heart-related events. These results of the cardiac monitoring came back normal, as well. My doctor then ordered another round of blood work in which she ordered some additional tests that she didn’t really discuss with me. Once again the blood work came back normal. At this point my doctor said she could find nothing wrong with me other than the fact that my blood pressure was still running on the high side. She added another blood pressure medication to my daily regime and sent me on my way. All the while my symptoms were getting worse. It was very frustrating to say the least. I was practically living on Tylenol due to the severe headaches and struggling to stay awake for longer than a two hour stretch, before needing to sleep again. I even went so far as to tell her at my last appointment that if she could find nothing wrong with me physically then perhaps I had mental issues--stress related or something! I just wanted things to be back to normal. My body was definitely telling me that something was wrong and I couldn’t get any answers. I left my doctors office that day very discouraged and still very worried.
I took it upon myself to contact and schedule an appointment with my eye doctor. I wanted to explore the vision issues I had. I anxiously awaited that appointment. While at the appointment, I explained what was going on both with my vision, as well as the other physical symptoms I had that couldn’t be explained. He didn’t find anything until he dilated my pupils. With my pupils dilated he was able to view the back of my eyes. He noted that my optic nerves, on both eyes, were bulging into my eyes due to the pressure generated in my brain from an unknown cause. He immediately told me that I didn’t need an eye doctor, I need a neurologist. I remember actually being relieved that he had found something and my response was “well at least I know there is something wrong and I’m not imagining all of this.” He explained that intracranial pressure would have certainly caused all of the physical and visual symptoms that I had described to the doctor. He also explained that the skull has just enough room to house what’s “normally” there. If anything else takes up space in the brain things started getting pushed and shifted out of place and that is what was happening with my optic nerves. Left untreated he told me I would have lost my vision and possibly had a stroke. He speculated that there was one of two things going on… either I had a tumor or swelling. He doubted that I had a tumor and would bet his money on something called pseudo tumor cerebri. He explained it as swelling in the brain of unknown origin that could easily be treated with medication or, worse case scenario, a shunt. He had his secretary make an appointment with a local neurologist that he recommended.
The day I met with the neurologist he too suggested he thought it was pseudo tumor cerebri.The plan of treatment was to return in a week or so for a MRI and a spinal tap to rule out any type of infection in my spinal fluid. I was then to meet with him for the results in a few weeks.
The day arrived for my MRI. When finished, the technician took me to the waiting area and asked me to have a seat, explaining that he had to “go find something out.” Since I’d never had an MRI before, I didn’t really know if I should be worried or not. I was in the waiting room for about 15 minutes, when he returned and stated “instead of returning for your scheduled return visit with the neurologist in two weeks, he’d like to see you at 8:30 a.m. tomorrow morning,” At that point I figured they had found something. I remember going home and thinking to myself how rude it was that they were making me wait until tomorrow morning, when it’s obvious to me that they found something on the MRI! Needless to say I was angry.
I was mad and, for the first time, scared. I figured they had found a tumor or cancer. The last time I had heard the words brain tumor was when I was in high school and the young man who had the tumor did not survive. I immediately thought the worse, that I would be facing a death sentence in the morning for sure. I told my husband what had transpired and explained that I’d be returning in the morning to meet with the neurologist. We both knew they had found something. I told him that I wanted to go to the appointment alone. He repeatedly expressed that he’d like to be there with me and asked if he could come along. I refused. He was even calling me on the phone from work the following morning asking if he could meet me at the doctor’s office. I don’t know why, but this was something that I wanted to face alone. I knew the possibilities and I just needed to be presented the diagnosis and prognosis alone. Just long enough to digest the information and then I’d share it all with him.
When I met with the neurologist the following morning he said, “Well we now know what has been causing all of the problems you have been having.” He continued, “You have a brain tumor, but it is most likely benign.” He then pulled my MRI scan up on the computer and showed me the tumor. I could see the large white blob that appeared to be located behind my left eye on the scan. He told me that based on what they could tell from the MRI that the tumor appeared to be a type of tumor called a meningioma. He explained that they are normally benign, and it could potentially be successfully removed. He suggested that I would want to see a neurosurgeon with a lot of experience with these types of tumors. He suggested I visit a Dr. Henry Brem at Johns Hopkins University in Baltimore, Maryland. He told me that Dr. Brem would probably want to remove the tumor and that he’d be able to tell me more when I met with him - like about what type of deficits I could have from the surgery, based on his experiences and the location of the tumor. Before I left, the neurologist wished me luck and said that nobody would wish for a brain tumor, but if you had to have one this particular type is the kind to have. I guess that was a little bit of the silver lining in the cloud.
So there it was….a brain tumor. The diagnosis was given to me on November 30, 2004. It had taken me four months to get a diagnosis. And I ended up getting a diagnosis only because I had taken it upon myself to pursue an appointment with my eye doctor…in hopes of at least getting an answer to my vision problems.
I immediately started gathering as much information as possible on the Internet about meningiomas, treatments, etc. The more information I have readily available to me, the more at ease I feel. I wanted to know it all.
On January 18, 2005, I had a bone flap craniotomy at Johns Hopkins University in Baltimore, Maryland. The tumor was successfully removed. I have no neurological or physical deficits at all! Dr. Brem and his team are a wonderful group of people who did an outstanding job. Going forward, I will have yearly MRI’s to ensure there is no re-growth. Meningiomas are typically slow growing tumors, however if there were any tumor cells left behind, then re-growth could occur. The MRI’s will be my peace of mind.
I truly believe that I was brought through this whole experience with flying colors for a reason. I think what Chris is doing is wonderful. It is something that is definitely needed, and great to see, at a local level. I am really sorry that I didn’t get to meet Kelly. From what I have learned about her, she and I have a lot in common and would have made great friends…everything from having a wicked sense of humor to a passion for cooking. I may not have been able to be there for you then Kelly, but I’m here for you now and will do everything and anything I can to support Chris and the Foundation. We will keep your memory alive and work hard to improve things for our fellow “noggin’ buddies” whose lives we hope to touch in the future.
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