Born: September 25, 2012
Diagnosed: November 28, 2017
Died: August 4, 2018
– Spirited – Charismatic – Enchanting –
Mom, Robin, describes Bruce: “Bruce believed from the time he was a small child that he was meant to live out of doors, and has proven to be utterly impervious to all physical elements.
“On this particular day, Bruce insisted that his yaya (my mother who passed away this year of metastic thyroid cancer) take him for a walk in the pouring rain with an empty suitcase with which he had become enamored. She indulged him as always.
“Some well-intentioned citizen notified the police of a child outside in poor weather being followed by an old woman. No less than three police officers reported to the scene to investigate. When Bruce was questioned as to yaya’s identity, Bruce replied ‘who, him??’
“My memory of this is being called at work and having a police officer request that I corroborate the whereabouts of my son. Members of our family laugh about this to this day.”
Mom (Robin) – along with Dad (Patrick), and brothers Jack and Fred – want others to know Bruce’s story because: “I remember sitting in the waiting room with my husband as Bruce was undergoing his first MRI. “What is the best and worst case scenario?” He asked me, trusting that my clinical background as a neurosurgery ICU nurse would give me insight to our sons peculiar symptoms. “Best case,” I told him “is that this is some kind of benign growth or a concussion – Let’s try not to worry ourselves. The worst case,’ I said, thinking hard, ‘would be that this is some kind of aggressive tumor that can’t be removed, that is resistant to chemotherapy, that only affects young kids, and that kills everyone who has it.’
“Upon the disclosure of Bruce’s diagnosis – DIPG – I was horrified to learn that I had invented in my own mind while trying to create the worst possible hypothetical affliction the very cancer that was growing inside my darling boy.”
Just after Thanksgiving, Robin Dodd suddenly noticed her 5-year-old son, Bruce, was slurring his words and had double vision. She rushed him to the emergency room, worried that he’d ingested poison or hit his head. But the news was worse than Dodd, an ICU nurse at the University of Kentucky Chandler Hospital, could have imagined: Bruce, a bouncy, Star Wars-obsessed boy, had a rare, aggressive and incurable brain cancer called Diffuse Instrinsic Pontine Glioma (DIPG).
“It was such a horrifying shock,” she said of his diagnosis. “I’m a nurse and I had never even heard of this cancer.”
Soon after, Bruce started daily radiation treatments at UK, the only thing known to slow the course of this disease.
Bruce celebrated finishing those treatments with some of his very favorite people in the world.
As he walked out of the treatment room in his Darth Vader costume, his eyes got big as he spied the 7-foot-tall Darth Vader breathing loudly outside the door. They shook hands and a huge smile spread across his face. “Want to come home with me?” he asked.
Then Bruce rang the big bell that hangs in the waiting room to signal the end of his treatment, and walked to the Combs Building to party with Vader, assorted storm troopers, sand troopers and even Kylo Ren (members of the 501st Legion, a national Star Wars costuming group that does pediatric charity events). Bruce parried a light saber, bumped fists with storm troopers, and showed people his big gold trophy that simply said: “Bruce, Last Treatment, Jan. 30, 2018.”
Bruce appeared to show few effects from six weeks of radiation, or as he calls it, “Dr. Jon’s Shrinking Ray,” administered by Dr. Jonathan Feddock. Most children require sedation to be as calm and still as they need to be for radiation to the head, Feddock said, but Bruce soon learned to lie perfectly still. “It’s not easy for kids,” Feddock said. “He’s one of our most dynamic and enthusiastic patients.”
He was so utterly enchanting.
He gave the best hugs.
He was a chatterbox. His chatter was the most beautiful sound. The last word he said was yes when we asked him if he loved us.
His favorite book was about a bear named Corduroy.
He never went to Kindergarten.
He had just lost his second tooth.
Bruce had an inquisitive love for things that could be opened and closed, locked and unlocked. He loved to push the buttons on the elevator. He was his happiest outside, jumping on the trampoline in the snow or pulling a wheeled suitcase around the neighborhood with YaYa in the rain. Onlookers might have assumed he was unaccompanied as he walked ten steps ahead in the grocery store, pushing his own cart. Bruce laughed at his own jokes; big belly laughs like a contagion. His knock-knock jokes were signature. Bruce was wise, perceptive, friendly, cheerful, and so silly. His cheeks would flush the rosiest red. His hair fell into strawberry colored ringlets. He had a big nose.
What happens after death? Not one of us knows. The unknown is unsettling, haunting. Is there a soul? A part of Bruce that will exist in a sort of afterlife of as another form of life in the universe now that his physical body has gone to rest? These questions will consume us as we grieve. We will be grieving for the rest of our lives.
We are so thankful to every person who touched Bruce’s life. He received extraordinary medical care at the University of Kentucky, Kentucky Children s Hospital, Cincinnati Children s Hospital, and New York University. Bruce s every wish was made to come true with the help of friends, family, organizations, and strangers. Bruce’s time on this earth was joyous. He was cherished.