Meet Declan, a 5 year old Ganglioglioma warrior.
When Declan was 3 years old, he was diagnosed with Ganglioglioma. Declan started having sudden onset seizures and was rushed to the emergency room by his mother, Stephanie. “As a nurse, I knew immediately that something neurological was going on.”
“While in the recovery room three doctors approached us. We stood for the information and they asked if they could take us to a separate room. My heart dropped so far into my gut. As we walked out of the recovery room I looked at Jeremy [my husband] and said “This is not good.” I’ve never in my life wished I had been so wrong about being so right. The doctors shut the door and the first thing they said was “I’m sorry. We did see a large tumor on his MRI.” I looked at Jeremy and we made eye contact and then everything is a blur. I heard the word tumor multiple times, biopsy a few times, and I honestly can’t tell you much more that went on in that room. What I do know is that was the moment the universe strapped me into a rollercoaster of negative and optimistic, over and over again.”
Declan has received 18 months of chemotherapy and several surgeries to help remove the section of his tumor that is causing the seizures. Epilepsy has been the biggest obstacle for Declan and his family. He “gets an aura and will call out “SEIZURE.” Teagan [his brother] comes running yelling ‘Declan is having a seizure!’ Declan thinks it’s funny at times to call out seizure when he knows he isn’t having a seizure.”
“Declan’s diagnosis has changed my life, and in many ways it has helped me become a better mom, wife, and nurse. In the middle of caring for my son, and in the middle of a pandemic, as a nurse, I changed careers. I now work as an oncology RN at Brigham and Women’s Hospital on the DFCI inpatient unit. I absolutely love going to work each day, and take care of these patients who have the unfortunate burden of cancer. I can relate in ways that others can’t and I form bonds with my patients through sharing our stories of our own journey.”
Declan continues to have daily seizures and just recently had a right temporal parietal craniotomy in hopes of removing the part of the tumor. “We have a long road ahead of us. It is with a heavy heart that we let people know that Declan’s surgery was not successful in eliminating his seizures. We are now faced with a new path of trying to get seizures under control.” Doctors have given the family three options in hopes of getting his seizures under control. Declan’s doctors say that unfortunately his seizures will never go away.
He “has a unique awareness of his medical status and is very open about his diagnosis. He tells people that he is special because he has a brain tumor and seizures. He tells his story with pride.” The family as a whole has decided to turn Declan’s diagnosis into a positive by helping to raise money for childhood cancer. Stephanie competed in the Pan Mass Challenge with Team Kermit and last year, the team raised more than $500,000 for pediatric brain and spinal cord tumors.
Follow Declan’s story here: Deck’s Clan
Learn more about Brain Tumors here: https://www.acco.org/brain-tumor-awareness-month/