Brains for the Cure Ambassadors
I’m a survivor. I was diagnosed with a brain tumor at 12 years old. I was told that I had it my whole life, and I would be faced with a permanent vision loss, as well as several other medically-challenging issues. Due to my tumor, I was forced to quit basketball, my lifelong passion, and figure out a new way to get through life. I told myself after my surgery that I was not going to let my tumor take control of my life. I also told myself that I’d aim to help find a cure ASAP so other kids didn’t have to go through what I did. I have raised funds to support research through Head for the Cure.
ependymoma and apxa survivor
I had my first treatment in 1999, when I was 9 years old. I had a gross total resection (craniectomy #1) of an ependymoma followed up by 6 weeks of radiation.
Fast forward to 2014, I had another gross total resection (craniectomy #2), this time of an anaplastic pleomorphic xanthoastrocytoma (APXA) in my cerebellum. That time I did not have any post-surgical treatment, and had a rather uncomplicated recovery from surgery (in the hospital for 4 days, back to my normal activity level within a month).
Then in early 2016, the APXA came back, in the same location. I had another gross total resection (craniectomy #3) and this time, my surgeon referred me to a neurooncologist and a radiation oncologist. They both recommended that I undergo proton therapy radiation.
Over the next two years, I got married and had a baby and was able to focus all of my energy on those exciting events as the brain cancer stayed at bay.
Soon after though, in 2018, and again in 2019, I had craniotomies #4 and #5 to remove recurrent tumor. It was in 2019, that my treatment started to incorporate an oral medication that inhibits a mutated gene that my tumor happens to have. Since then I have also had proton therapy radiation to my spine. I have also started systemic therapy with one of the newest classes of medication that target the genetic mutation my cancer has.
Growing up, Greg Link had a picture-perfect life. He was raised in an upper middle class home, on the Upper West Side in New York City. Greg studied marketing and finance at Drexel University in Philadelphia. Life was good.
Greg started his career in entertainment working the front desk at a prominent entertainment talent firm. Greg quickly moved up the ranks from answering phones to eventually developing relationships with young and upcoming talent. Greg then branched out and created signature events around Superbowl, Sundance, Oscar’s, Grammys, Emmys, Coachella, Kentucky Derby among others.
Just as Greg was thriving professionally, his life took a turn of events. In 2014 he was diagnosed with Glioblastoma, a rare and highly fatal form of cancer targeting the brain. This diagnosis forced Greg to slow down and look inward to focus fully on his health and recovery. It would be the largest event of his life. Greg decided to take a two-lane approach to treatment.
While western medicine led the way to stall the disease, it is his belief that his focus on having a positive mental attitude, a commitment to a healthy daily lifestyle and introducing alternative medicinal options such as cannabis and CBD into his daily protocol, accounts for him being one of the 5% of patients who beat the odds and survive the diagnosis, and remain cancer free 5 years or more. Greg’s story is one of flash and substance.
He has found balance in the yin and yang world we live in. It is a story of hard work, determination and the American dream played out on the catwalks of fashion week, in front of cameras of red carpet movie premieres and in the hospital in the cold dark moments of MRI’s. It proves when your story should be over, there still may be another chapter and that you should never give up hope.
I am a survivor of a ganglioglioma brain tumor. I was diagnosed right before my sophomore year at K-State. The day I was diagnosed I was admitted to the ICU and had a biopsy and an awake craniotomy within 13 days. My tumor was on my motor/sensory strip so I lost function in part of my right hand. I went back to K-State just 6 weeks after surgery and still graduated on time with an elementary education degree. I was doing monitoring through yearly MRIs until last year when I was told the tumor is coming back slowly. Doctors are baffled as this change is not common for this tumor type. I was diagnosed in October with focal/partial epilepsy in the parietal lobe which is rare. I spent 10 months getting the right medicine and dosage to manage them although I’ll never be complete seizure free. For now I am managing the seizures and doing scans every 6 months as we formulate a plan for if the growth continues.
I am a survivor – I have recently learned an amazing way to think of cancer. I am not living with cancer, rather cancer is living with me! I was diagnosed with a grade 2 astrocytoma brain tumor in January of 2018 at the ripe age of 27. I had just begun my legal career and was newly married. During my treatment course of brain surgery, radiation, and chemotherapy, my life transitioned to becoming an unemployed, divorced woman. While the journey has been long and winding, I have met some really amazing warriors along the way and am reminded everyday that I am stronger than I think I am. I have such a great deal of gratitude for all of my supporters and truly wouldn’t be where I am today without my family and friends cheering me on. While cancer changed the course of my life forever, I believe everyday brings a new opportunity. We may not be able to control the cancer or the outcome, but we do have the ability to flip the script and decide what happens next. For me – this meant adopting a sweet puppy and serving others in the cancer community through advocacy in Washington, D.C. My hope is to create a better future for those impacted by brain cancer.
Tom Sadowski was born in Grosse Pointe, Michigan, grew up in Marathon, Florida and now resides in Jefferson City. Tom graduated from the University of South Florida with a Bachelor’s of Arts in accounting. He then went on to obtain a Master’s degree in Public Administration from the University of Missouri. Tom worked for the Missouri State Auditor’s Office, Missouri Department of Revenue, Central Bank, and the University of Missouri in several roles before retiring in 2009. Tom enjoys volunteering with several organizations and serves on multiple boards such as the Boys and Girls Club, Jefferson City United Way, and SCORE.
Tom is a 19-year brain cancer survivor, and helps others as much as he can when they are diagnosed.
A month before my 26th birthday, I went to the ENT regarding a pulsating noise I was hearing in my right ear. A scan revealed a mass in my brain about the size of a small orange. My first surgery was right around the new year, and it was revealed to be a brain tumor. This came as a double-whammy for my family, as 12 years prior to that, my dad had the same kind of cancer removed from his brain: Anaplastic Oligodendroglioma. Our family then decided to participate in a study funded by the NIH to find any genetic link in brain cancer that is still ongoing today.
Less than a year later, after losing my mom suddenly, I was told my tumor was growing, so I started taking the chemotherapy drug Temodar to keep the tumor at bay. Determined to keep thriving, I went on a whitewater kayaking trip and a couple of surfing trips with other young adult cancer survivors.
Over the course of the years, I’ve had 2 surgeries (1 awake), 24 rounds of Temodar, 6 weeks of IMRT radiation and 2 courses of PC(V) chemo. In 2015, my dad lost his 19-year-long battle with the disease, when his brain tumor metastasized from his brain, down his spine, into his hip—an extremely rare occurrence. After losing my dad, I decided to dedicate time to the brain tumor community and mentor others dealing with this terrible disease. I also advocate on behalf of all survivors to increase funding and raise awareness to help find a cure!