When Jenaya and Josh discovered they were expecting their first baby, they imagined a peaceful pregnancy and a gentle birth at a birthing centre.

But at 28 weeks, a routine check following a small fall revealed something neither parent could have prepared for — a mass was growing on their unborn baby’s arm.

Doctors initially believed it was a hemangioma, a type of vascular growth, although they warned that a more serious condition could not be completely ruled out.

She found herself wondering whether her baby could become critically unwell before he was even born, whether she would see his heartbeat at the next scan, or whether the mass could suddenly cause a devastating complication.

When little Toby finally arrived, Jenaya initially thought the condition might not be as severe as expected.

Then, once the rush surrounding his birth settled, she looked closely at her newborn son.

His upper arm was enlarged, covered with patches and lumps, with deep crevices between them. A hard mass could also be felt on the back of his shoulder.

What followed was a desperate search for answers.

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

But Jenaya and Josh refused to stop searching.

They contacted the International Vascular Birthmarks Foundation in the United States, hoping someone might recognize what doctors were seeing.

The Foundation advised that Toby needed urgent testing and recommended a specialist radiologist at Westmead Hospital in Sydney.

After reviewing photographs and medical information, the radiologist contacted Jenaya directly and urged the family to travel to Sydney immediately.

A biopsy was performed, along with detailed genetic testing through the Zero Childhood Cancer national clinical trial.

Toby had a malignant spindle cell neoplasm — cancer. Jenaya remembers becoming completely still as the words sank in.

Her tiny baby, only weeks old, was now facing a battle she had never imagined.

Doctors believed Toby had infantile fibrosarcoma, a rare childhood cancer, and the family was suddenly thrown into an exhausting new world of scans, hospital stays and difficult decisions.

A PET scan was carried out to determine whether the cancer had spread. For Jenaya, the waiting was almost unbearable.

She feared she might have to say goodbye to her baby before she had even had the chance to truly know him.

Then came two frightening options: amputation of Toby’s arm and shoulder, or stronger chemotherapy with no guarantee that it would stop the cancer.

At just three months old, Toby’s parents faced an impossible choice.

They initially agreed to amputation. But only two days before surgery, they changed course.

Additional chemotherapy was added to Toby’s treatment, and, to their enormous relief, scans showed that his tumor had stopped growing.

He went through 12 cycles of chemotherapy, enduring repeated hospital admissions, infections, blood and platelet transfusions, and the many complications that came with such intensive treatment.

Through it all, his parents watched their tiny son continue to fight.

Then, when Toby was 11 months old and had reached the limit of chemotherapy he could receive, another possibility emerged.

Genetic testing showed that his cancer was sensitive to crizotinib, a targeted treatment. After his oncologist successfully applied for compassionate access in the United States, Toby was finally able to begin the new therapy.

After seven months on crizotinib, Toby’s cancer has continued to shrink. His shoulder tumor was down to around 2cm on his latest scans, and remarkably, he is meeting his developmental milestones.

For Jenaya and Josh, life is still measured scan by scan. They do not yet know exactly when Toby’s treatment will end or what the future will bring.

But for the first time, they are also experiencing moments that feel wonderfully ordinary — taking their little boy for walks, seeing friends and family, and watching him grow into a toddler.

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

Their journey has also changed the way they view childhood cancer treatment. Jenaya hopes Toby’s experience can help drive research into safer and more effective therapies for children.

“With chemotherapy, we were constantly in hospital dealing with side effects,” she says. “With targeted treatment, we’re actually able to live a life while receiving treatment.”

For a little boy whose journey began with a mysterious mass before he was even born, Toby has already shown extraordinary strength.

His road is not over. His family is still waiting for answers, still facing uncertainty, and still taking things one scan at a time.