At just three years old, Jack Kennelly faced a daunting battle against a rare and aggressive type of cancer known as rhabdomyosarcoma, becoming the first child in Australia diagnosed with this specific brain cancer. His mother, Kristen Kennelly, noted that Jack exhibited no typical symptoms associated with cancer initially. Instead, the change in his behaviour was subtle—his once energetic nature began to wane, leading to increasing irritability and prolonged sleep during the day.
Kristen recalled the day a significant change occurred. While at daycare, Jack unexpectedly fell asleep on the grass, prompting his caregivers to contact her. “They called me and said, ‘It was a bit strange; we found him asleep on the grass,’” she shared. As his daytime sleeping escalated, the family monitored Jack closely, leading them to seek medical advice from their local general practitioner.
The situation escalated when Jack complained of severe head pain while playing with other children. “He said, ‘It really, really hurts,’ and he was on the floor,” Kristen recounted, which led them to rush him to the hospital. After a series of tests, Jack was sent home, but vomiting the following day prompted a return visit where a CT scan revealed a tumour.
Jack and his mother were subsequently flown to Sydney for further evaluation and treatment. “In one sense, I was really thankful that something was happening, that we were on the way to solving what this problem was,” Kristen reflected, though they faced uncertainty about the diagnosis. Weeks later, a biopsy confirmed the presence of rhabdomyosarcoma, a type of tumour that typically arises in muscle tissue rather than the brain.
Through the Zero Childhood Cancer Program, Jack’s cancer was linked to a genetic mutation, specifically a DICER1 variant. This crucial information allowed his medical team to tailor an effective treatment plan. The family was aware of another benign tumour on Jack’s heart, which had been monitored since his infancy, but it was ultimately his brain cancer that required immediate intervention.
By December, the Kennelly family returned to their home in Canberra for the holidays, but upon their return two weeks later, they discovered the tumour had doubled in size. Jack underwent an intense treatment regimen that included nine surgeries, six rounds of chemotherapy, and six weeks of radiation therapy, all without anaesthetic. This remarkable feat spared him from additional procedures that would have been necessary.
Kristen explained Jack’s remarkable resilience. “The really unique thing about Jack is that he doesn’t complain, and he never has. He presents really well,” she said. Despite the challenges, Jack maintained a cheerful disposition, entertaining hospital staff with jokes even during difficult times.
A pivotal moment in Jack’s journey came when doctors decided on one final surgery to remove the remaining tumour. The family received surprising news during this visit—the doctors reported that the tumour was no longer present, attributing the earlier concern to post-radiation swelling. “The oncologist said it’s gone. It must have been post-radiation swelling,” Kristen recalled, expressing disbelief at the unexpected turn of events.
Now at six years old, Jack is gradually returning to his lively self, although he continues to face some vision challenges and the long-term implications of his DICER1 variant, which necessitates ongoing monitoring for new tumours. The Kennelly family is committed to giving back to the community that supported them, engaging in fundraising efforts for childhood cancer charities.
One upcoming initiative is the charity event, Step Out For Cancer, scheduled for November 9, 2023. This fundraiser aims to collect $800,000 for the Minderoo Children’s Comprehensive Cancer Centre, the first of its kind in the Southern Hemisphere dedicated to childhood cancer. The Kennellys encourage others to contribute to this vital cause, underscoring the importance of supporting families affected by cancer.
Jack’s journey exemplifies resilience and the power of community support in the face of adversity. As he continues to navigate his health challenges, the Kennelly family remains hopeful and dedicated to making a difference for others fighting similar battles.
