We're Inspired By Your Courage.
IN HONOR OF KEN WHITLEY
In 2016 I was at the top of my game professionally physically, and I thought spiritually. I was successfully growing a multimillion business and had the respect of peers, friends, and family. I was exercising at a high level, had a new home, was teaching adults and High Schoolers at church, and had two wonderful daughters and son in-laws. In December of 2016, for the first time, in my life, I suffered migraines. The PA gave me a shot in the bum, scripted a dose pack of steroids and sent me home. The treatment worked and I credited the pain to end of the year stress. On Super bowl Sunday of 2017 life was turned upside down and my faith journey became supercharged. I entered my brother’s house for a party and he insisted I go to the hospital immediately. While I didn’t feel bad, he and others noted an imbalance in my gait and trouble with my speech. My girlfriend (Cathy) took me to the hospital and a CT scan revealed a tumor. After admission to Neuro ICU, a surgeon removed a tennis ball size tumor from my right temporal lobe. The surgeon told Cathy my brain had been close to herniation and I was 24-36 hours from death; the operation saved my life.
My Journey through 2017 had many hurdles and blessings. After my craniotomy and transfer from Neuro ICU to a regular room, I called Dellann Elliott Mydland at End Brain Cancer Initiative.Dellann’s team was factual, frank, and encouraging. The EBC team provided guidance and insight that changed my and Cathy’s approach to my treatment and connected us with key doctors in North Carolina. Cathy and I, however, had embarked on a faith journey no conversation could prepare us as GBM creates challenges at a fast and furious pace.
As 2017 progressed the challenges and hurdles continued to stack up like playing cards. In March, we visited Duke to find I was NOT A CANDIDATE for the polio treatment or the CMV clinical trial (the only clinical trial they could offer). We also visited two other Cancer centers and started radiation, chemo, and a clinical trial. In April, Acid Reflux, from the drugs, inflamed my sinuses to the point of fluid was draining from my ears. In May, a routine MRI showed swelling and midline shift. I had to go to back in Neuro ICU with a dexamethasone drip and told a second craniotomy was urgently needed. Cathy and I took a cautious, conservative, and urgent approach seeking counsel from multiple surgeons and oncologists in the Charlotte area and the team at EBCI. We concluded it was serious and a second craniotomy was less urgent than my admitting neuro-oncologist had painted.
In June, we went back to Duke where a new regimen of chemo was scripted. Also, in June, I proposed and Cathy accepted. Since she had been walking with me since the tumor was first found, she knew the prognosis and I was blessed with her “YES.”
August proved to be a monumental month. We found through a routine MRI, the tumor was still growing and Duke had a clinical trial showing promise, that I was a candidate for!! This Duke trial was new hope as my tumor had grown through radiation, a clinical trial for Novalmab and multiple rounds of Temadar. On August 31, 2017 Cathy and I stood before God, the preacher, and many friends to say “I DO”. God blessed me with the love of a wonderful girlfriend and now He gave her the courage to enter a covenant relationship with a guy carrying a brain tumor.
While tumor growth was a concern, the hurdles GBM brought to my daily life were extremely frustrating. I had difficulty reading as I would lose the left 2 inches of the computer screen and inch of a book. I also lost the first 2-5 letters of some words. Women, for example, read men leaving me with two men’s restrooms and sometimes a very red face. Loss of left peripheral vision also caused me to run into doors, walls, store displays, AND people on my left side. Most people were understanding but some were offended. Before GBM I was using reading glasses and experiencing some loss of hearing. After the first craniotomy my vision deteriorated further and reading a shelf tag became a challenge. Deterioration in hearing, and sight were compounded by “brain fog.” I went from top of my game to can’t find the game in a few short months. I quickly identified hearing and vision declines. I was slower to pick up the significant reduction in cognitive processing speed and it became a significant point of frustration. Not only did I struggle with things that were once easy, everything took longer and I couldn’t understand why. With the frustration of these changes, the emotional impacts from the tumor, and emotional impact from drugs, my moods were shifting like the spring weather. My mood may change in a few minutes or a few hours and I couldn’t understand why. My challenges were further compounded by extreme dizziness when I stood after sitting for a while. I would get so dizzy I had to hold onto something. A couple of times I thought I was going to fall down while holding onto the car or parking sign. We believe this was due to low cortisol caused by long term use of dexamethasone.
September brings the clinical trial at Duke. On September 19, 2017 Dr Alan Friedman drilled 4 holes in my head and started a 72 ML drip of bacteria into the tumor area. Today, my journey continues and I fully expect the challenges of GBM to continue changing and coming. I know, however, my god, Jesus walks with me and my family on this journey. GBM is my disease, not my identity. I am the adopted son of a loving god.
I started this journey believing I was at the top of my game on all fronts. I am now closer to God than I have ever been and am physically stronger than any time in the past 5 years. Through this, I have experienced the true meaning of grace (from God, friends, and family) and come to realize where my faith should rest. In January of 2017, I relied on me and me LET ME DOWN. The day after each operation, I was too lethargic to feed myself, Within a couple of weeks I was doing cardio and strength training. The ONLY thing I did was try over and over again. Don’t quit!! THERE IS HOPE!!
Through this journey, I learned to put one foot in front of the other; keep moving forward; and trust God. While I had trusted him with my soul, this journey has taught me to trust Him with my everyday life. I get to face the unknown with a known god that knows and loves me. Since the September “infusion” my MRI’s have shown tumor reduction and dissipation or “ no measurable change in the tumor!” A “NON DUKE” NEUROLOGIST SAID “I HAVE NEVER SEEN GBM DO THIS”. Additionally, Hydrocortisone supplements took care of the dizziness; my peripheral vision is getting better; AND I can read again!!
DON’T GIVE UP!! THERE IS HOPE! Put one foot in front of the other; keep moving forward; Define and pursue your goals while putting your trust in God. Doctors can treat. They can’t heal. God does, however, work through doctors and scientists. New GBM treatments are around the corner Don’t give up! Once again, define your goals and focus on the future. Focus determines direction and attitude! Let someone else have an “OK” life. Seek an awesome one. I am hoping to run in the 2019 Fight the Good Fight 7k. There is a good chance I will be wearing a shirt with D2C7 on the back. This will be to recognize the clinical trial God worked through to change my life.
IN HONOR OF NICK BLAZEK
During the summer of 2018, while visiting the town my wife, Sanekia, grew up in, our lives would change forever in a few short hours.
In the weeks leading up to that weekend, things hadn’t been right. I had been apathetic, sleepy. Motor skills would be a bit sloppy. I was having headaches and high blood pressure for the first time in my life. At 38 years old and my birthday about a week away, how bad could it be? The medication the clinic gave me seemed to get rid of the headaches. So, I was on the track back to normal. Eh, not so much.
While preparing to go to bed one night, things got weird for me. I couldn’t really walk for a short time, and just sat on the bed. I could hear everyone but couldn’t respond. My wife Sanekia said ‘put on your shoes or I’m calling 911’. I of course… did not put on my shoes and said, “I’m fine.” This will be where I learn to not say that anymore.
After paramedics came, administered an IV, left and then came back, the realization set in I was anything but “fine”. The decision was made that there was something wrong with me beyond what the local hospital could handle. So, with a storm en route, the destination was decided – Chattanooga’s Erlanger Hospital. I got the fancy ride on the helicopter. My wife had to drive. She got the better deal.
My wife meeting me at the hospital will be some of my last memories of the weekend. We learned in those critical minutes that I had a mass in my brain and needed brain surgery. Whoever thought THAT was my issue? So, while she told the family I was fine just a short time ago, the story now needed revising.
On Monday, I had a tennis ball size tumor removed. A Grade IV GBM, or Glioblastoma. Cancer. Are you serious? They indeed were. Suddenly it wasn’t just my zodiac sign. It was part of who I was. So now, my battle has begun. Now it was time to face it.
My approach? Positivity. Humor. I make fun of it. Why? Because what life will it be if I’m sad and complain? If anyone thinks I am going somewhere, they are sorely mistaken. Because I’m not. And this cancer will learn that in time, as well.
It’s been almost seven months since I had the bulk of this monster removed. Since then, we have been through radiation, chemo, more chemo and now the Optune device. All of this happened while we were waiting for the inspiration that will push us past this disease, our daughter, Adeline Noelle. She arrived on 12/15, and we aren’t looking back. From the foundations to the new friends I’ve made that have, or are battling this same disease–no one fights alone. She might not understand it now, but Adeline will have one heck of a story for me to tell when she gets older. – Nicholas Blazek
2017 – IN HONOR OF ANGELA LANE
Imagine being a woman and at the height of health. Regular exercise through running and with a trainer – check! Eat right – check! Brain cancer…(insert sound of screeching breaks!) That’s what happened to Angela Lane. Angela lives in the Denver area and works in Huntersville with her business as a CPA. Early in September 2015, she started noticing issues seeing the numbers with which she was working. Numbers would “disappear” off the end. Then the migraines started. At the insistence of friends and family, she finally went to the doctor. Angela Lane, a picture of health, was diagnosed with Glioblastoma Multiforme. And if GBM wasn’t enough, in August 2016, Angela was diagnosed to be in the early stages of breast cancer. Yeah…
And she still smiles. She might cry sometimes but she is a fighter. She is optimistic. The breast cancer is gone. There is a plan for what’s next with Duke. She goes to work most days. She has fun with friends. She sometimes reluctantly lets her daughter help her find things in her closet. She is a mom, a friend, a neighbor. Most importantly, through all of this, she is fighting the good fight!
IN HONOR OF SHARON MOTTOLA
It is one of those sayings you hear often, but not until you experience it firsthand does the full meaning truly sink in – “Life can change in an instant.”
Sharon Mottola grew up in West Orange. When it came time for college she stayed close to home, attending Seton Hall and graduating with her bachelors in nursing in 1996. Pursuing a career in the medical field, it’s fair to say she always had a caring heart – but it wasn’t until she became a patient herself that she realized the need to make volunteering and service an integral part of her life.
Mottola had always had dull headaches, with a few migraines over the years, but nothing that seemed abnormal. It was when she started experiencing constant déjà vu that she knew something was wrong. She visited her doctor (who also happened to be her colleague of seven years) and was sent for a CT Scan.
Life can change in an instant.
In Mottola’s case, it was fifteen minutes – the fifteen minutes after the scan, when she was told she had a brain tumor. In that short time, her doctor had already scheduled an MRI and an appointment with a neurosurgeon for the next day. She cried numb, shocked tears. She was scheduled for brain surgery within the week. “It was a very scary time, but because of the exigent nature of the surgery, I didn’t have a lot of time to worry since I had to put life in order,” says Mottola. “[My husband] and I hadn’t even thought about a will, but that had to be done. Family needed to book flights to come and stay with us. The swiftness almost made it easier than if I had weeks or months to plan and worry.”
This life-changing event was the springboard that launched Mottola into volunteering. “While home recovering, I scanned the internet for information and resources to turn to. The National Brain Tumor Society (NBTS) was one of them.” Having moved from New Jersey to North Carolina, she attended the first meeting of the Charlotte area team and felt instantly connected to the organization and the members. “During the presentation, I cried because it brought back so many feelings of hopelessness and dread and being just plain scared! Those ladies that night made me feel so welcomed and it was then that I said to myself – I am ok. But I need to help those that aren’t and find out why this happened to me. I never received that [last] answer.” NBTS may not have given Mottola answers to all her questions, but it certainly gave her the courage and inspiration she needed to use her experience to help others. She has been an extremely active member of NBTS since her recovery, and is the co-chair of this year’s Charlotte Brain Tumor Race being held on October 10 at Marshall Park.
Mottola believes her dedication to service, although catalyzed by her diagnosis, finds its roots in her education at Seton Hall. “Seton Hall instills from the very first day of orientation that it is so important to give back to the community and to help those that are less fortunate.” True empathy and compassion cannot be taught in a classroom – it can only be learned through firsthand experiences. “Students should participate in some sort of service as it relates to their course of education. This provides a different perspective and allows the student to engage.”
While Seton Hall hopes to make a sustainable impact on its students during their days here, it also places emphasis on volunteering at all stages of life and hosts service events that encourage participation from all members of its community – students, faculty, staff and alumni. This year’s “Seton Hall Day of Service” does just that. On October 24, in conjunction with the student initiative “Service on Saturdays,” Pirates across the country will be volunteering in their local communities in a variety of ways. If you’re interested in volunteering and would like more information, contact Terranze Griffin, associate director for regional alumni engagement.
Written by Taryn Nie
IN HONOR OF RENEE HEAGLE
For Renee Heagle, at only 32, a brain tumor was the furthest thing from her mind when she started experiencing headaches, mood changes, and minor difficulties with speech. Each minor symptom could easily be explained away a dozen different way. However, in the early morning of January 12th, Renee experienced several unexpected and terrifying seizures. As her husband Mat and 12-year-old son Caden, tried desperately to help her, they will forever carry the memories of those agonizing minutes of helplessness before the paramedics arrived. That morning Renee’s life changed forever.
Renee led a full and busy life. As well as being a wife and mother, Renee worked at Weddington Dentistry as a dental hygienist. On her off time she enjoyed working out, hanging out at the lake with her friends and cherished time with her family most of all. She and her husband were looking forward to expanding their family and they had just recently adopted their sweet puppy, Boomer. No one could have imagined the difficult journey that laid ahead.
At the hospital Renee was told that she had a fist-size tumor on her frontal left lobe. She was told that surgery needed to be performed immediately and that there was a good chance the tumor was malignant. In the two weeks that followed, friends and family poured in from all over the country. To say Renee is loved fiercely would be an understatement. And while this news may have been earth-shattering to most of us, Renee has handled everything with grace, faith, strength and humor. She makes everyone around her laugh and has done as much comforting as she has been comforted. Her bravery has shown us all what we already knew, Renee is definitely the toughest girl we know.
Renee had surgery on February 2nd and the surgeons were very optimistic with how well the surgery went. Although she was told to expect paralysis in her right leg, she was up walking only hours after surgery. We were all praying continuously for a miracle and were broken-hearted when pathology confirmed that it was, indeed, brain cancer. On February 14th, Renee was diagnosed with Anaplastic Astrocytoma Grade 3. She will soon undergo chemotherapy and radiation treatment.
Renee’s main goal is to complete treatment, so she is able to return to the life she loved. Even in the midst of the shock Renee remains steadfast in her faith and is humbled by all the support she has received. Renee’s main concern continues to be her son, husband, family and friends. She is an inspiration to all of us to “fight the good fight”.
Written By Christine Cornell
Written by Taryn Nie