‘My baby was born with a rare cancer and we had no idea'

“I had all the scans but when he was born, no one expected his body to look the way it did,” the anguished Gold Coast mum reveals.

Jenaya walked into the 28-week scan of her first pregnancy expecting to hear that all was well with her unborn baby following a very minor fall a few days prior.

When she saw the monitor, however, something completely different became her entire focus.

“They said they found a mass on his left arm,” the Gold Coast mum tells Kidspot. 

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“I was nervous. I didn’t know what to expect.”

At the time, it was suspected her unborn child had a vascular birthmark.

“It was putting pressure on his heart and there was a risk of him going into heart failure,” the 30-year-old says.

“That caused a lot of fear and anxiety.”

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Jenaya holds her son Tobias who was born with a rare cancer that caused tumours on his left arm. PIcture: Supplied

"The masses were unlike anything anyone had ever seen"

Despite being closely monitored right up until the full term birth in January, 2022, Jenaya and husband, Joshua, could never have prepared for the devastating health battle that their baby son, Tobias, would suffer from the moment he took his first breath.

Tobias was born with his left arm at least twice the size of his right, with a large, hard mass on his shoulder, as well as “lumps” all down his left arm to his wrist.

“The masses were unlike anything anyone had ever seen,” Jenaya remembers vividly.

“No one expected them to look the way they did.”

After Tobias’s arm was scanned, and the masses were deemed benign, mum and baby were discharged from hospital just five days after birth, with his case transferred to an outpatient clinic.

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Jenaya and her husband Joshua before Tobias arrived. Picture: Supplied

The couple with the newborn son. Jenaya is raising awareness for her son's rare cancer. Picture: Supplied

"This baby needs to be looked at immediately"

When Jenaya discovered the follow up appointment allocated for her son was an entire two months later - and via telehealth - the first-time-mum took matters into her own hands and sought out information from a US-based vascular birthmark organisation.

“They said this baby needs to be looked at immediately.”

Jenaya immediately contacted a Sydney hospital, who gave her the same response, and that very week, in the middle of recovery from her C-section, flew down with her three-week-old baby.

A biopsy there delivered Jenaya the most devastating news she never expected. The lumps on Tobias’ arm were in fact, tumours.

“I went into this beautiful room and I instantly thought, ‘This is what it would look like if they had to tell you something bad,” she says emotionally.

“They came in and said it wasn’t what they originally thought - it was cancer, and the oncology team were on their way. I remember going very still and not saying a lot.”

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Tobias was born with tumours on his left arm and shoulder. Picture: Supplied

He was just five weeks old when he started chemotherapy. Picture: Supplied

"Our options were amputation or chemotherapy"

Following the diagnosis of the extremely rare, infantile fibrosarcoma (IFS), Tobias began chemotherapy at just five weeks old.

After two months, however, their hopes of him responding to the treatment were cruelly dashed.

“His arm and shoulder were growing before our eyes and we were very concerned,” she remembers.

“A scan showed the tumour had grown exponentially.” 

By the time their little boy was just three months old, Jenaya and Joshua faced the most difficult decision imaginable.

“The two options were for him to have a four-quarter amputation, where the shoulder and arm are removed, or put him through stronger chemotherapy, which had no guarantee that it would work,” the brave mum explains.

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Jenaya now feels confident her son will recover from his cancer. Picture: Supplied

"The decision was about giving him the best quality of life"

Tobias would end up keeping his arm, but instead have to battle through a further nine months of chemotherapy.

“The risk of the cancer returning at the site of amputation was higher than the risk of it spreading through the chemo trial period,” she says.

“We were at peace with the amputation, and the decision was all about giving him the best quality of life possible.”

While Tobias responded well to the aggressive chemotherapy, reduced-size tumours still remained, causing serious concern.

Surgical removal of the masses and skin grafting became impossible, however, when clear margins of the cancer weren’t able to be found.

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Tobias has come a long way in the past 15 months. Picture: Supplied

He's now a happy 15-month old whose had an "incredible" response to his treatment. Picture: Supplied

"I celebrate every little milestone"

With the only other option of amputation remaining, a lifeline came when Tobias was approved to be accepted into a trial of a targeted genetic therapy which treats his exact mutation.

Now three months into the treatment - which is able to be done at home via gastric tube - Jenaya’s optimism for her 15-month-old son’s recovery is immeasurable.

“He’s had an incredible response to it,” she says positively of her son, who has incredibly reached all his first-year milestones without an issue.

“We are taking it scan by scan, but the last one showed his tumours are continuing to shrink, which is amazing. We believe he’s going to make it through this, but we truly never know what’s coming. We know how things can change in an instant.”

“I celebrate every little milestone like him being able to sit in a shopping trolley for the first time, every day. I just love being his mum. I’m in constant awe of him.”

In July - Sarcoma Awareness Month - Jenaya will be donating 50 cm of her hair to be made into wigs for children experiencing medical hair loss and shaving the rest. Her goal is to raise $10,000 on behalf of The Kids Cancer Project for research into treatment for infantile fibrosarcoma. She shares her journey via Instagram and Facebook.

Originally published as ‘My baby was born with a rare cancer and we had no idea'