Adam’s Story
Adam Hayden is one of our Leo’s who has shown his resilience through his work as a patient advocate since his diagnosis. In addition to being a father of three, he serves on the Board of Directors at the National Brain Tumor Society. He has visited and spoke with Congress, NIH, FDA and the White House to share his experience and knowledge. He has been published in peer-reviewed journals and runs a blog, Glioblastology, as a resource for others in the community. Glio Leo is proud to share his story in his own words below.
My wife, Whitney, and I were actually “boyfriend and girlfriend” nearly 30 years ago, when we were 12 and 13! As you can imagine, a middle school “romance” didn’t last! But we remained friends, and we reconnected socially in our late 20’s, and we were married within a year! This past June we celebrated 14 years of marriage! We have three kids, all boys, Isaac, Noah, and Gideon, ages 13, 11, and 9. We’ve now been married longer with my brain cancer than without it. This is a true testament to “in sickness and in health."
I began having symptoms—seizures, but we didn’t know that at the time, back in 2015. I was otherwise very healthy, so it took a long time to figure out the medical mystery. We thought maybe vertigo, maybe a circulatory issue, maybe nerve damage, but after more than a year of specialist visits, these “dizzy spells” became so frequent and worsening that I was ordered to a STAT MRI in May of 2016. That scan showed a 71mm primary brain tumor in my right parietal lobe. I was very quickly scheduled for surgery.
My surgery (craniotomy) was performed while I was awake so that the surgeon could functionally map my brain in real-time and mitigate the harm to eloquent areas of my brain. The tumor was so large, and its placement in the brain made me especially at risk for sensorimotor impairment. After surgery, I was temporarily paralyzed on the left side of my body. After recovering from surgery, I was admitted into a rehabilitation hospital where I was put in a brain trauma unit, and I worked with neuro-specialist PTs and OTs to relearn to walk, dress, feed, and bathe myself. After discharge from this rehab hospital, I continued to work with outpatient therapy for several months to recover as much function as possible, but I still require the use of a cane and sometimes a wheelchair when I'm outside the house. I continue to struggle with persistent seizures, and I no longer drive because of this.
I was diagnosed with glioblastoma in June 2016, but I was told the surgery was very successful and that I had many positive prognostic indicators. I responded exceptionally well to radiation and chemo therapy, which I took for a year from 2016 to 2017. Incredibly, I remained more or less stable through scans all the way until the end of last year. I have had necrosis and other late-effect radiation damage, but incredibly no recurrence.
Through a series of tests and scans late last year, we confirmed recurrence, and I’ve been back on chemo for the past 11 months. The tumor responded well, but we’re beginning to see signs that the chemo may no longer be controlling the tumor, so we are closely monitoring with continued chemo, labs, and scans every four weeks. We are in a pretty frightening time right now when it comes to scanxiety (scan + anxiety).
Our three kids were 4, 2, and 8 months old when I was diagnosed, so they’ve been along for the entire journey, and Whitney and I have done our very best to be transparent, honest, and age-appropriate with our boys. They really are incredible kids, and they’ve shown resilience throughout.
Within a year of diagnosis, I attended my first patient advocacy event, and I’ve been a dedicated patient advocate as a purpose in my life. I’ve traveled to DC dozens of time to speak with Congress, the NIH, FDA, and this year I was even invited to the White House to speak on a panel with the Biden Cancer Moonshot. I’ve co-facilitated a virtual brain tumor support group for over six years that has served hundreds, if not thousands of patients. My personal blog, Glioblastology, has been a great way for me to document and process my life with brain cancer, and it’s become a popular peer-to-peer resource. I am also proud to have several articles in peer-reviewed journals, writing about everything from palliative care to nursing practice, all tailored from and to the brain tumor community. I’ve also published op eds discussing survivorship and advocacy. I currently serve on the Board of Directors for the National Brain Tumor Society. In 2022, I was awarded the Jan Esenwein Public Service Award in Neuro-Oncology from the Society for Neuro Oncology.
-Adam Hayden