Ride For Kids

Ride for Kids® Devin O'Day's Story

Devin Early Years
I was born with a rare benign brain tumor called a Hypothalamic Hamartoma. This type of tumor is in the middle of the brain, next to the optic nerve, and attached to the hypothalamus, which controls bodily functions such as temperature, thirst, hunger, arousal, and emotions. From the time I was an infant I had gelastic seizures, which my parents called laugh attacks. I would begin laughing hysterically for no reason, it would last for about two minutes, and I would be exhausted for hours afterwards. The older I got, the worse the seizures became. By puberty I began having emotional outbursts, dacrystic (crying) seizures, and cognitive decline. Basic math became more difficult, advanced mathematics became impossible, and reading comprehension became challenging. My pediatricians said that the "laugh attacks" were nothing to worry about. At age ten I saw a neurologist who diagnosed me with epilepsy. I had an MRI, but the radiologist missed the tumor. My emotional outbursts were by far one of the worst side effects of having this brain tumor. At any moment, I could become angry or depressed without warning. It could last for a few minutes or for days, and it made it hard for my family and friends to deal with me. When I was sixteen, my condition deteriorated drastically when I began having up to four seizures a day. My mother demanded another MRI, and this time they found the tumor. My parents immediately began doing research and found that the best place in the world for my type of tumor was Barrow Neurological Institute (BNI) at St. Joseph's Hospital in Phoenix, Arizona.

Before Surgery
Due to the size (1.7 cm) and shape of my tumor, Dr. Harold Rekate at BNI did not want to do my surgery until their new intraoperative MRI was up and running. The next 14 months were the longest of my life. My surgery was postponed twice, and I was constantly stressed out. I dropped most of my friends because I assumed it would be "for the best" that I wasn't a part of their lives if I were to die during surgery. I was a senior in high school when I found out I had a tumor, and my teachers were kind enough to help me through the last five months of school and graduate with an honors diploma.

Devin Surgery
On April 6th of 2007, exactly two weeks after my 18th birthday, I had to sign my life away, literally. But at 5:30 in the morning, I was as calm as I could ever be. In addition to my parents, two of my sisters, Bethany and Melissa, and Melissa's mom Debbie flew out from Vegas to be with me the night before surgery. The morning of my surgery, everyone was surprised by how calm I was. All I wanted was to get the surgery done so I could have something to eat. When I woke up two hours after the surgery and saw my parents' faces, it was one of the most comforting moments of my life. They both looked so relieved, and once I realized that it was all over, I asked them for my I-Pod. My parents and my surgeon knew I would be okay when I asked Dr. Rekate within 15 minutes of waking up, "what influenced your decision to drill in through the right side of my head?" Shortly afterwards, Bethany, Melissa, and Debbie were allowed to come into the recovery room and witnessed the fact that I was still "the same old Devin," because I could still crack jokes and use as much sarcasm as possible. After five days in the Pediatric ICU and three more days in Phoenix, I was able to go home to Las Vegas. I had a 30% chance of having a stroke, going blind, or dying from the surgery, but it all turned out well. Unfortunately, Dr. Rekate could only safely remove half of my tumor, but he was able to detach all but a sliver of it from the hypothalamus.

Devin Now
I am currently 23 years old, and I am graduating with my Bachelors Degree in Sociology on May 12th from the University of Nevada Las Vegas. I am also the proud recipient of a Pediatric Brain Tumor Foundation scholarship. Because of the trauma to my hypothalamus, I developed Diabetes Insipidus, I have body temperature fluctuations, and I can be hypersensitive at times. I have only had a couple of small seizures since the surgery, which is a major improvement. I do my best to try and live a normal life. When I came to the realization that I could die during surgery, I started to look at life differently. I tried to enjoy every part of life – the good and the bad – and I still live by that philosophy. A couple weeks after surgery, a family friend said, "In a little while you will all look back on this time and wonder if it was real". That statement could not be more accurate. This truly has been the experience of a lifetime. In recent years, I have founded the Non-Profit – Brain Tumor Outreach of Southern Nevada – which reaches out to children, teens, and adults who are diagnosed with either malignant or benign brain tumors and that live in Southern Nevada. After I graduate, I plan on fully dedicating my time and life to my organization and my hope is to help as many people as possible. The link to my website is www.btosn.org.