Toby’s journey began even before he entered the world. At just 28 weeks into her pregnancy, his mother, Jenaya, visited the doctor for a routine check after a minor fall at home. An ultrasound uncovered a troubling mass on her unborn son’s arm. Initially thought to be a harmless hemangioma—a benign birthmark—it hinted at a more serious possibility: sarcoma.
“I went in for scans every two weeks, not knowing if I was going to have to deliver then or not,” Jenaya remembers. Each visit brought anxiety, uncertainty, and the heavy burden of what-ifs. The mass, filled with blood vessels, stressed Toby’s tiny heart. “Could he pass away in my belly, and I not know? Could this mass just rupture and bleed out?” she reflects, her voice quivering with emotion.
Upon Toby’s birth, his condition was immediately visible. His upper arm was swollen, marked by deep lumps and crevices. While his parents had hoped for a less severe reality, the gravity of the situation became evident within hours. Referred to Brisbane’s Vascular Anomalies Clinic, Toby underwent numerous tests. Multiple specialists reassured Jenaya and her husband Josh that the mass seemed benign—but they continued to seek answers.
With support from the US-based International Vascular Birthmarks Foundation, the family sought expert opinions, ultimately connecting with a radiologist at Westmead Hospital in Sydney. The radiologist confirmed their worst fears: Toby required urgent intervention. A biopsy was conducted, and the Zero Childhood Cancer Program (ZERO) enrolled Toby for comprehensive genetic analysis.
The results were devastating. Toby had a malignant spindle cell neoplasm—cancer. The oncology team was brought in immediately, and Jenaya struggled to grasp the reality. “I was thinking, ‘Am I going to have to say goodbye to my baby before I’ve even really got to know him?’” she recalls, her voice breaking. The diagnosis came with additional hurdles: COVID-19 exposure led to isolation, and Queensland floods disrupted their home life.
Despite the turmoil, Toby’s treatment progressed. A central line was placed, and chemotherapy commenced. However, progress was slow. Within weeks, his mass had significantly increased, forcing his parents to make a heart-wrenching decision: amputation of his arm and shoulder, or more aggressive chemotherapy with no guarantee of success. “My very first Mother’s Day was spent debating the life of my three-month-old,” Jenaya shares. Ultimately, additional chemotherapeutic agents were introduced, and to their relief, the tumor ceased growing.
Genetic testing indicated that Toby’s cancer was responsive to crizotinib, a next-generation targeted therapy. Although it had never been used for sarcoma or in infants, they were granted access on compassionate grounds. By eleven months old, Toby began this treatment, marking a crucial turning point in his fight. The crizotinib not only targeted the cancer cells but also allowed him to continue developing like a typical toddler.
Over the following months, Toby underwent twelve cycles of chemotherapy, multiple hospital stays for febrile neutropenia, blood and platelet transfusions, and recurring infections in his arm. Yet, through it all, he exhibited an indomitable spirit. Today, his tumor has shrunk to just 2cm, and he is achieving all his developmental milestones.
Life for the family remains measured “scan to scan,” Jenaya notes. The uncertainty of Toby’s future is a constant challenge, but they are learning to cherish the small joys: walks in the park, visits with friends and family, and community involvement. Each day, Toby reminds them of what truly matters—the resilience of the human spirit, even in the smallest of bodies.
This journey has also inspired Jenaya to advocate for safer, more effective childhood cancer treatments. “Too many kids are dying not from cancer, but from the side effects of traditional chemotherapy,” she asserts. “Our children deserve treatments that allow them to live while they heal. Targeted therapies like crizotinib are changing the game. Toby can thrive while receiving treatment—every child should have that chance.”
Toby’s narrative is one of bravery, love, and perseverance. From the daunting uncertainty before his birth, through a diagnosis that could have broken any family, to a treatment journey that merges science with compassion, Toby embodies resilience beyond his years. He has transformed what could have been a tale of despair into one of hope, inspiring his parents, doctors, and the broader community to strive for improved outcomes in childhood cancer.
Though the journey is far from complete, each milestone—each day filled with laughter, each moment of play, each scan showing progress—serves as a testament to Toby’s courage and the potential of innovative treatment. With his parents by his side and the support of groundbreaking programs like ZERO, Toby’s journey continues, shining a light on the possibilities that emerge when determination, love, and advanced science come together.
In every smile, every unsteady step, every joyful shout, Toby demonstrates that even the smallest warriors can confront the most daunting challenges—and triumph, not just against illness, but for the life they deserve to lead.
