From the very first moments of life, Toby’s journey has been defined by uncertainty, fear, and an unrelenting fight for survival.

Even before he took his first breath, his parents, Jenaya and Josh, were thrust into a storm no expecting parent could ever fully prepare for.

A Start Filled With Uncertainty

At just 28 weeks into Jenaya’s pregnancy, a routine ultrasound revealed a mass growing on Toby’s arm. What initially seemed like a minor anomaly soon escalated into a battle that would test every ounce of resilience in their hearts.

The doctors cautiously suggested it might be a hemangioma—a benign birthmark—but they also warned it could be more serious, even cancerous. For Jenaya, who had envisioned a peaceful pregnancy and a safe delivery, the news was devastating.

Her mind raced with questions: Could her baby survive in utero? Would the mass rupture? Would the next scan reveal a heartbeat at all?

Every day became a careful balancing act between cautious hope and a lingering, gnawing fear. Jenaya attended scans every two weeks, each visit a tense reminder that Toby’s life hung in the balance.

The Moment of Birth

When Toby was finally born, Jenaya experienced a mixture of relief and horror.

“At first, I thought it wasn’t that bad. But hours later, when I held him, the mass was extensive—patches, lumps, deep crevices on his arm and shoulder,” she recalls. The reality was far from the benign growth they had hoped for.

Despite their fear and grief, Toby’s parents were determined to find answers. He was referred to the Vascular Anomalies Clinic in Brisbane, but uncertainty and worry never eased. Scans suggested a rare vascular anomaly, likely benign, but intuition whispered otherwise.

They reached out to the International Vascular Birthmarks Foundation in the United States. The response was urgent: this was not a typical hemangioma. Toby required immediate attention.

Diagnosis and Early Struggles

Jenaya connected with a radiologist at Westmead Hospital in Sydney. Within hours, Toby underwent a comprehensive evaluation, a biopsy, and a treatment plan was set in motion.

The results confirmed the family’s deepest fears: a malignant spindle cell neoplasm. Toby’s oncology team explained it was likely infantile fibrosarcoma, a rare cancer affecting young children.

Jenaya recalls the moment vividly:
“I couldn’t fully comprehend it. I was thinking, ‘Am I going to have to say goodbye to my baby before I’ve even really got to know him?’”

As the family began to process the diagnosis, new complications emerged. Jenaya and Toby were required to self-isolate due to potential COVID-19 exposure, while flooding in Queensland limited Josh’s ability to support them. The uncertainty was overwhelming.

A PET scan offered a small measure of relief: the cancer was confined to his arm and shoulder. But the fight was only beginning.

The Harsh Reality of Treatment

Treatment began immediately with chemotherapy delivered through a central line, while the family returned to Queensland for ongoing care. Yet after two months, it became painfully clear that the initial regimen was not halting the tumor’s growth. Week by week, the mass enlarged, presenting an impossible choice: amputation of his arm or a more aggressive chemotherapy plan.

The weight of the decision was almost unbearable. Jenaya faced her first Mother’s Day with a mix of love and fear, contemplating a procedure she could scarcely imagine for her three-month-old child.

Eventually, the chemotherapy plan was adjusted. Gradually, scans indicated that the tumor had stopped growing—a glimmer of hope in the dark storm.

Genetic testing revealed an extraordinary opportunity: Toby’s cancer was sensitive to crizotinib, a targeted therapy not yet widely used in children for sarcoma. Initial regulations prevented immediate access, but the family tirelessly pursued compassionate use.

A Beacon of Hope

After 11 months, Toby began treatment with crizotinib. Seven months into therapy, scans showed remarkable results: the tumor had shrunk to just 2cm. Toby was not only surviving but also meeting all his developmental milestones.

Despite progress, the road ahead remained uncertain. Jenaya and Josh lived “scan to scan,” never fully knowing when treatment would end or what new challenges might arise. Their daily lives revolved around hospital visits, medication schedules, and the unpredictable nature of recovery.

Amid the uncertainty, they strived to embrace ordinary moments: walks in the park, playtime with toys, and the small joys of life with a toddler. Each moment was a victory, a reminder of what they were fighting to preserve.

Advocacy Born from Adversity

Through their journey, Jenaya has become a passionate advocate for research into new treatments for childhood cancer. She emphasizes the critical need for safer, more effective therapies.

“Traditional chemotherapy, while life-saving, often inflicts profound side effects that threaten a child’s quality of life or even survival,” she explains.
“It has broken my heart to hear of another child passing from something that isn’t even the cancer, but is something meant to save them. Our kids deserve safe and effective treatments.”

Toby’s story is more than a narrative of illness; it is a testament to human courage, parental devotion, and medical innovation. From the first ultrasound revealing the mass, through weeks of uncertainty, intensive treatment, and unimaginable emotional strain, Toby and his family have faced each challenge with unwavering determination.

Every Milestone Matters

Every milestone Toby achieves—every reduction in tumor size, every developmental achievement, every smile—is the result of parental love, expert care, and emerging therapies that offer hope where there was once despair.

His journey highlights not only the resilience of a child fighting for life but also the dedication of families navigating rare childhood cancers. It underscores the importance of accessible clinical trials, compassionate support, and advocacy for innovative treatments that can save young lives.

Courage in Many Forms

Toby’s story reminds us that courage comes in many forms:

• In the fragile body of a baby fighting cancer.

• In the tireless love of parents navigating impossible decisions.

• In the relentless pursuit of treatments that allow children to survive and thrive.

For Jenaya, Josh, and Toby, every day is a victory. Every small triumph is a testament to endurance. Every step forward is a beacon of hope in a journey that began in fear but continues with love, resilience, and belief in the power of modern medicine.

Inspiring Families and Professionals

Toby’s story continues to inspire families, doctors, and researchers alike. It reminds us that miracles are built not only from medicine but from the strength of human hearts refusing to give up.

From prenatal scans to life-saving therapies, from fear to cautious hope, Toby embodies the resilience and courage of a fighter. His journey proves that even in the darkest moments, determination, love, and faith can illuminate a path forward.

Every hospital visit, every procedure, every tiny victory reinforces the impact of parental devotion and medical innovation. Toby’s life shows us that even when the odds are stacked against us, hope can persist. It grows stronger with each milestone, each smile, each moment of normalcy reclaimed.

A Life of Hope

The battle is far from over, but Toby’s story reminds the world that courage, love, and relentless hope can transform despair into life.

For Jenaya, Josh, and all families walking a similar path, Toby is living proof that bravery starts small, but its impact can be enormous. Every scan, every therapy, every embrace carries a message: fight, survive, thrive.

Toby’s journey is far from complete, but his spirit—and the spirit of those who love him—shines brighter than any obstacle. It is a story of hope, a testament to resilience, and a reminder that even the smallest fighters can inspire the world.