When Jenaya and Josh learned they were expecting their first baby, they imagined a peaceful pregnancy and a gentle delivery. But at 28 weeks, a routine check after a minor fall revealed something that would change everything: doctors had discovered a growing mᴀss on their unborn son’s arm.

At first, specialists believed the mᴀss could be a hemangioma, a type of vascular growth. But they could not completely rule out something more serious. For Jenaya, every scan became filled with fear and unanswered questions.

When Toby was born, his parents initially hoped the situation might not be as severe as they had feared. But once they saw him closely, they noticed that his upper arm was unusually enlarged, covered in patches and lumps, with deep crevices between them. A hard mᴀss could also be felt near the back of his shoulder.

Toby was referred to specialists in Brisbane, where early scans suggested a rare vascular anomaly. His parents were initially told that it appeared benign.

But they continued searching for answers.

The family contacted the International Vascular Birthmarks Foundation in the United States, hoping someone might recognize Toby’s unusual condition. The organization recommended urgent testing and connected them with a specialist radiologist at Westmead Hospital in Sydney.

After reviewing Toby’s pH๏τographs and medical information, the specialist urged the family to travel to Sydney immediately.

A biopsy and extensive genetic testing followed through the Zero Childhood Cancer clinical trial. Then came the devastating news: Toby had a malignant spindle cell neoplasm.

It was cancer.

Doctors believed Toby had infantile fibrosarcoma, a rare childhood cancer. Suddenly, his parents found themselves navigating scans, hospital stays, treatment decisions, and fears they had never imagined facing with their newborn son.

A PET scan was performed to determine whether the cancer had spread. Then doctors presented the family with two frightening possibilities: amputating Toby’s arm and shoulder or trying stronger chemotherapy, which came with no guarantee of success.

At just 3 months old, Toby’s parents faced an impossible decision.

They initially agreed to amputation, but only two days before surgery, they changed course. Additional chemotherapy was added to his treatment, and, to their enormous relief, scans showed that the tumor had stopped growing.

Toby went through 12 cycles of chemotherapy, enduring repeated hospitalizations, infections, blood and platelet transfusions, and numerous complications.

Yet he continued to fight.

When Toby was 11 months old and had reached the limit of chemotherapy he could safely receive, genetic testing revealed another possibility. His cancer appeared sensitive to crizotinib, a targeted therapy. After his oncologist secured compᴀssionate access to the medication, Toby began a new chapter in his treatment.

Seven months later, his tumor continued to shrink. His shoulder tumor had decreased to around 2 centimeters on his latest scans, and remarkably, Toby was continuing to reach developmental milestones.

For Jenaya and Josh, the journey is far from over. Their lives are still measured scan by scan, and they do not yet know exactly when Toby’s treatment will end or what the future holds.

But they are finally experiencing moments that once felt impossible—taking their little boy for walks, spending time with family and friends, and simply watching him grow.

“We’re learning to go with the flow,” Jenaya said. “We’re just grateful to be able to experience life at home with him.”

Toby’s journey has also given his parents a new perspective on childhood cancer treatment. Jenaya hopes his experience can contribute to research into treatments that are both more effective and less difficult for young children.

For a little boy whose cancer first appeared as a mysterious mᴀss before he was even born, Toby has already shown extraordinary strength.

His story is still being written—one scan, one treatment, and one precious day at home at a time. 💙✨