When Jenaya first heard doctors had found a ‘mass’ growing on her unborn baby’s arm, she tried to stay calm.

“I remember thinking, ‘Oh, it’s not that bad… we can deal with that,’” she recalled.

At 28 weeks pregnant, an ultrasound had revealed the unusual growth after Jenaya had a minor fall at home. Doctors initially believed it was likely a hemangioma, but the possibility of something more serious could not be completely ruled out.

From then on, Jenaya faced scans every two weeks, never knowing whether the next appointment might mean delivering her baby early.

The mass contained so many blood vessels that it was placing pressure on Toby’s tiny heart, leaving his mother overwhelmed with fear.

“Could he pass away in my belly and I not know? Would I see a heartbeat at the next scan?” she remembered wondering.

When Toby was finally born, Jenaya initially believed the situation was not as frightening as she had imagined.

But when she was finally able to hold him and look closely, she saw patches, lumps and deep crevices covering his arm and shoulder.

Toby was referred to specialists in Brisbane, where a series of tests followed. His parents were initially told the growth appeared to be a rare vascular abnormality and was considered benign.

But Jenaya and Josh continued searching for answers.

After contacting the International Vascular Birthmarks Foundation in the US, the family received an urgent warning that Toby needed further testing.

A radiologist at Westmead Hospital agreed and asked the family to bring their tiny son to Sydney immediately.

A biopsy changed everything.

Toby was diagnosed with a malignant spindle cell neoplasm, with doctors believing he had infantile fibrosarcoma.

For Jenaya, the words were almost impossible to process.

“I remember going very still,” she said. “I don’t think my brain could fully comprehend it.”

Then came the thought every parent fears most.

“Am I going to have to say goodbye to my baby before I’ve even really got to know him?”

Toby was only three weeks old.

While his parents were trying to understand the diagnosis, they were also dealing with COVID exposure and devastating floods in Queensland, leaving them separated from their normal support system and unsure what was happening at home.

Thankfully, a PET scan showed that the cancer remained contained within Toby’s arm and shoulder.

Treatment began with chemotherapy.

But after two months, the family received another devastating setback. The treatment was not working, and the tumour continued to grow.

“We could literally see it growing week by week. It was huge,” Jenaya said.

At just three months old, Toby’s parents were faced with an impossible decision: amputation or even more intensive chemotherapy, without knowing whether it would work.

They initially chose amputation.

But just two days before surgery, they changed course. Additional chemotherapy drugs were added to Toby’s treatment, and scans finally showed that the tumour had stopped growing.

Genetic testing then revealed something that could offer another path.

Toby’s cancer was sensitive to crizotinib, a targeted treatment. Because the drug had not previously been used for sarcoma in a child so young, it was not initially available to him.

Toby continued chemotherapy, eventually completing 12 cycles and enduring infections, hospital stays, blood and platelet transfusions and other difficult complications.

When he reached the limit of chemotherapy he could safely receive at 11 months old, his oncologist applied to access crizotinib on compassionate grounds.

The request was approved.

And slowly, the family began to see hope.

After seven months on the targeted treatment, Toby’s cancer has been shrinking. His shoulder tumour had reduced to around 2cm on his latest scans, and he is continuing to reach his developmental milestones.

For Jenaya and Josh, however, the journey is far from over.

“We’re going scan to scan,” Jenaya said. “We don’t know when treatment will end.”

Yet after everything their little boy has endured, the family is cherishing the simple moments they once took for granted — going for walks, seeing loved ones and watching Toby grow into a toddler.

“We just want to enjoy having our boy home and being part of everyday life again,” the family shared.

Jenaya now hopes Toby’s story can help bring greater attention to new treatments for children facing cancer.

She has seen firsthand how difficult traditional chemotherapy can be and believes children deserve treatments that are both effective and gentler on their growing bodies.

For now, Toby continues his journey one scan at a time.

From the tiny baby whose unusual growth was first discovered before birth to the determined toddler now meeting his milestones, his story is one of a family who refused to stop searching for hope — even when the road ahead seemed impossibly uncertain.

Source: ccia.org.au