Born: June 17, 2006
Diagnosed: November 29, 2010
Died: July 3, 2011
– Handsome – Charming – Funny – Precocious – Brave –
Mom, Nettie, describes Julian as someone who loved his baby sister, air guitar, spaghetti, dance parties and movies. He could talk to anyone who would listen and befriend someone wherever he went. He was such a cool kid, but hated when people treated him like one. When nurses told him they could put on the “Cars” DVD, he would ask if they had Indiana Jones instead. Once, when they were readying him for one of his countless pokes, he declared, “I’m impervious to pain.” That little man knew how to make us laugh!
Mom (Nettie), Dad (Brad), sister, Mirabelle, and brother, Bastian, want others to know Julian’s story because, “raising funds and awareness about this devastating disease will help researchers crack the code for other families. The stories of our brave children can still make a big impact on a world they had to leave too soon.”
Julian was one cool kid. Born with a thick head of raven hair, he was handsome from the start. He easily stole hearts with his big brown eyes, long lashes, and a personality that can best be described as joyful. Sociable and easy with laughter, Julian was a precocious preschooler with an old soul who boasted a vocabulary that would leave people laughing in disbelief at the words came out of such a little man’s mouth.
At four, he could swim the back stroke, play the piano, command a dance floor and carry on long conversations about his favorite movies, books and superhero plots. He enjoyed soccer and baseball, books and music, and talked of starting a rock band after dance parties in the kitchen to favorite songs from The Beatles, The Foo Fighters and The Four Seasons.
His family was thunderstruck on Nov. 29, 2010 – the Monday after Thanksgiving Weekend – when, with no previous symptoms, Julian awoke disoriented, unable to finish sentences and started vomiting. After rushing him to the ER, doctors discovered a mass at the base of his brain which would later be diagnosed as an atypical brain stem glioma. Our lives went from bright and beautiful to sick with worry. Over the course of that holiday season, Julian endured four brain surgeries to alleviate symptoms, was air-lifted from Detroit to St. Jude Children’s Research Hospital in Memphis, underwent two more minor surgeries for cancer treatment and started emergency radiation therapy on December 23.
He completed radiation on the primary tumor in January 2011. During scans in February, doctors delivered another blow when they discovered that the disease had spread to other lesions in his brain and lower spine. Julian moved and inspired us as he learned to dig deep and find the courage to face countless doctors, nurses, pokes, exams and cancer treatment no 4-year-old should ever have to know. He amazed doctors with his endurance during his second round of radiation in March 2011 – an experimental dose on his spine that up until then was thought to be too much for a child. Julian rebounded well and returned home to Michigan where he would start chemotherapy at the University of Michigan Mott Children’s Hospital.
In early June, Julian summoned the strength to fight Darth Vader during his Star Wars Disney vacation coordinated by The Make-A-Wish Foundation. On June 17, we celebrated his 5th birthday with nearly 75 friends and family. But only 10 days later, our worst fears were confirmed that his declining condition was indeed caused by a relentless return/spread of an extremely aggressive disease. Doctors at St. Jude broke the news that we had very little time left with our sweet boy. Home, surrounded with loved ones with the heaviest of hearts, we had to say good-bye only five days later. It was July 3, 2011, only seven months after we first heard the word “glioma.”
The courage Julian mustered during those seven months inspires us every day.