Josh’s Legacy
“Look, Mommy, me silly!”
Four words that changed the course of Josh’s life on December 7, 2002 (the day after his 2nd birthday), when he stumbled into the kitchen, banging into the walls during a seizure.
“Pediatric brain tumor,” the neurologist said. “It’s most likely benign.”
Famous last words.
The search for a surgeon was easy once we met Dr. Rick Abbott, who remained Josh’s surgeon for almost twenty years, until he retired. A total gross resection sounded like a cure. Little did we know four pathologists would come back with four different diagnoses—astroblastoma, astrocytoma, neurocytoma, and PNET—all cancerous.
Dr. Jeffrey Allen and Dr. Sharon Gardner successfully treated Josh with chemotherapy and a stem-cell transplant. It gave him seventeen years of remission, allowing him to play basketball and make friends, have a girlfriend, and go to school dances. He graduated from high school and started his college experience.
As a teenager, he had two surgeries to remove scar tissue, which prompted a school paper he titled “Josh’s Life Lessons.” In that paper, he wrote about perseverance. Anyone who knew Josh knew how mentally strong he was. He never engaged in self-pity or asked, “Why me?” He lived life to the fullest.
In that paper he wrote, “I’ve always loved basketball. Even before I was good, just being a part of the team was amazing.” But he was determined to be good, because another facet of his personality was determination mixed with a little stubbornness. “The first few years my play time was limited, but my father taught me a valuable life lesson, as my coach and dad. He told me if I worked hard, I’d achieve great things.”
And he did! By middle school, he was named team captain and competed in many tournaments, including the AAU Nationals in Virginia.
But Josh’s life was about more than just sports; he had a quest for learning. In college, he focused on Middle Eastern studies, read the works of the poet Rumi and the author A. Helwa, and learned to speak Arabic. In a college essay he wrote, “Instead of telling you a sad story about how terrible having a brain tumor made my life, I want to share the exact opposite. It may be difficult to imagine, but this experience has changed my life for the better. This experience has made me see life in a different light. After my medical experiences, I saw the positives of life. I now look at the new doors that have opened because, through the downfalls, I discovered looking at the good side of things is always better than focusing on the negative.”
One of those doors he referenced was advocacy. Josh became an advocate for the fight against brain tumors, beginning when he spoke for the first time on Capitol Hill in May 2018.
Then, in 2020, when he was a nineteen-year-old living his best life on his college campus, he experienced another seizure that took him back into the operating room with Dr. Abbott. After another successful surgery, Dr. Adam Levy and Dr. Jana Fox jumped in, and Josh spent the year in treatment for what they then classified as an embryonal brain tumor. After that, another year and a half cancer-free followed, Dr. Abbott retired, and we met Dr. Mark Souweidane to keep in our back pocket in case the worst happened. A good thing we did, because Dr. Souweidane performed five surgeries over the next three years—surgeries for tumors, an infection, and a cerebrospinal-fluid leak.
Dr. Jacqueline Stone and Dr. Nicholas Blondin teamed up with Dr. Souweidane for immunotherapy, additional chemo, and radiation over those years, but cancer is sneaky, and microscopic cells evade even the most talented. Josh developed tumors on his scalp. Those cells went further than that, and after a bout of double vision we discovered just how much damage they had done.
After a twenty-two-year battle with brain cancer, Josh found peace in his next endeavor, where he’s watching his favorite cartoons, going on thrill rides, and playing chess and video games.
Josh will always be remembered for the love he shared with his family: how he looked up to his older brother and protected his younger. He was a good friend and always made time for a phone call with Pop. Josh had a special bond with his grandmother, who, ironically, lost her battle with brain cancer four years before him. He enjoyed spending time on the beach with his great-aunt. Josh loved Batman and named his beloved standard poodle, Bruce, after the Caped Crusader. They were best friends from the moment they met, going to doggie school and learning tricks.
His brothers will always cherish his expertise on every topic. He was good at so many things and had knowledge of just about everything. Gifted with his hands, he assembled furniture without directions and excelled at Legos. He will also be remembered for his thirst for knowledge, his bright eyes and incredible smile, his dedication to his family, and his unwavering commitment to furthering brain-tumor research. One of Josh’s favorite sayings, even as he faced his mortality, was “This too shall pass.”
In that college essay referenced above, Josh concluded,
“My life struggles have led me to never give up when faced with a challenge, no matter how difficult it may seem. I am determined to always succeed in all that I do. My life experiences taught me to be resilient and persevere, to look at setbacks as just one more bump on the road of life because I will come out on the other side stronger. Through them, I learned to focus on my future and never give up on any dreams.”
Josh is carrying out one of those dreams through his selfless act of donating his tumors so a cure may be found and others will not have to suffer from the disease he so badly wanted to beat.
Our Donation Story
Josh was an amazing person who touched more people, and more deeply, than he ever realized. From the phlebotomist who drew his blood to an author he admired—his neurosurgeons, oncologists, professors, coaches, family, and friends—everyone told us what an incredible young man he was.
Passionate and opinionated, Josh loved a good debate. He was charismatic, drawing people in without ever recognizing that quality in himself.
Josh never let cancer define him, beat him, or win.
He will forever remain in our hearts and souls; not a day will pass without our thinking of him. He is loved and missed, and the donation of his tumors to help find a cure will stand as his enduring legacy.
