At just 21, Zack Johnson is grieving the recent death of his beloved father, Jeffrey S. Johnson, to chordoma, a rare cancer that attacks the spine and pelvis. To honor his father’s zest for life and expert care at Massachusetts General Hospital, Zack is now helping other families facing the same diagnosis.
About 300 patients — mostly adults — are diagnosed with chordoma each year in the United States.
Until seven years ago, Jeff lived life fully. He ran, lifted weights and biked. He loved summer, grilling and waterskiing in the lake near his home in upstate New York. And he always looked forward to winter, skiing and driving his plow. For 45 years, he operated the successful JSJ Decorating in Canandaigua, New York, with creativity and caring. He had a smile for everyone. Having lost his own father as a young adult, Jeff cherished his children — Zack, Cody and Alexa.
Then, a persistent pain in Jeff’s tailbone changed everything. An MRI at a local medical center confirmed a mass. A biopsy revealed chordoma. Initially, Jeff had surgery to remove the tumor and follow-up radiation at that center. But two years later, when his cancer recurred, Jeff turned to Mass General’s Stephan L. Harris Center for Chordoma Care, where experts specialize in its diagnosis, treatment and care.
About 300 patients — mostly adults — are diagnosed with chordoma each year in the United States. Often, the first signs are pain at the tumor site and changes in sensation and function. Involving the spine and pelvis, chordoma tumors can impair the nerves that control bowel, bladder, and sexual function and can spread to other organs, tissues and bones. The overall toll is life-altering.
“As a dad, he was nothing short of amazing. He always saw the bright side of things.”
Early intervention by chordoma specialists is key. But few medical centers have the specialists and resources to treat chordoma successfully. At Mass General’s chordoma center, patients are treated by experts in the disease: radiologists, pathologists, surgeons, radiation and medical oncologists, advanced practitioners and other support specialists. When radiation and surgery were performed first at Mass General, most patients achieved a four-year survival rate, shows recent research. To find new treatments for the disease, Mass General clinicians also are engaged in clinical trials.
Jeff and Zack’s Journey
When Jeff first became sick, Zack didn’t fully understand his father’s diagnosis. But, as his father’s disease progressed, requiring multiple, life-altering surgeries and radiation cycles, Zack began to understand. He also learned about the powers of paternal love and positive spirit.
“He made sure to get to every game he possibly could,” says Zack, a multi-sport athlete. “As a dad, he was nothing short of amazing,” says Zack, now a junior at SUNY Cortland in New York, majoring in sports management. “He always saw the bright side of things.” During morning rounds at Mass General, Jeff charmed clinicians with his positive spirit and vibrant smile.
A Disease that Touches the Whole Family
“It’s a life-altering disease that affects the whole family,” explains Anne M. Fiore, DNP, ANP-BC, clinical director at the center. Financial worries often compound the stress of families already facing challenging medical issues. For example, most chordoma patients come from out of state for diagnosis, radiation and surgery. For many of their families, the costs of travel, lodging, and missing work are formidable. Some families simply can’t afford to accompany their loved one.
Zack hopes his effort will preserve his father’s legacy of caring and offer chordoma families the gift of more time together.
Zack’s Way to Help
After his father’s passing at age 61 on Sept. 2, 2020, Zack talked with Anne about how to honor him; he joined the BeCause community, Mass General’s online fundraising program that helps individuals raise funds for a specific cause. Zack’s cause? Helping families of chordoma patients at Mass General with lodging, travel and other expenses so they can be with their loved ones. Though there’s an existing Chordoma Family Fund, Anne says Zack’s fund is critical. “There’s always so much need,” she says. So far Zack has raised more than $18,000 of his $25,000 goal.
Zack’s cause has another benefit. “Having a loved one at their side helps patients on the road to healing,” Anne says, citing her own research and other studies.
Meanwhile, Zack hopes his effort will preserve his father’s legacy of caring and offer chordoma families the gift of more time together. “I would give anything for another minute with my Dad,” he says.
A young Zack Johnson with his father, Jeff, at his Canandaigua, NY home. Photo by Pamela C Johnson.