Aussie toddler’s battle with cancer as mum says personality flip was the first sign of something wrong

First-time parents Alisha and Brendan walked in silence through the dimly lit car park of Westmead Children’s Hospital.

After swinging open the doors of their car, the Sydney couple, numb, collapsed into their seats.

In the back, an empty infant seat was a lonely reminder of their 11-month-old boy Huxley — who was bravely fighting for life in the hospital’s PICU.

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Having to leave their little boy in the care of specialist medics, the couple reluctantly returned home, Huxley’s scattered toys another reminder of their sudden, new reality.

“Why would my kid have cancer?” Alisha tells 7Life of her baby son’s shock diagnosis.

“Obviously we see children diagnosed and being treated with cancer on the TV, but not to us, not to our baby.”

Doctors had found a 9cm tumour, which was starting to attack Huxley’s spine and which was also wrapping around his aorta.

It was a moment his parents will never forget — from thinking he had pneumonia to being told the worst possible news.

Everything started to unfold in December 2023.

Huxley’s excitement began to peak as he eagerly awaited his first visit from Santa Claus.

The independent, cheeky toddler loved being the centre of attention and was always racing around.

But as Christmas neared, he was shying away from social situations and loved nothing more than a cuddle from only his mum or dad.

He also began curling up on the floor, seemingly exhausted.

And in early January this year, the 11-month-old began suffering from a nasty cough.

Alisha was wary of the big changes in personality and health in her little boy and, with her normal doctor on holiday, she sought advice from another GP.

Huxley was prescribed steroids and the doctor asked his parents take him back for the next day for a follow up.

Twenty-four hours later, Alisha, who was 27 weeks pregnant, was sitting in the same waiting room, as Huxley began screaming in agony.

She knew something was wrong.

Racing out of the clinic, she sped to Nepean Hospital in western Sydney, where Huxley was immediately admitted.

A chest x-ray confirmed fluid in 50 per cent of his left lung, and the baby was diagnosed with pneumonia.

After antibiotics and a three-day hospital stay, he was discharged, Alisha finally breathing a sigh of relief.

But just a few days later, she noticed Huxley gasping for air.

“He was struggling to breathe, sucking in under the ribs, grunting between breaths and his eyes looked scared,” Alisha says.

She raced back to Emergency and her little boy was sent for another x-ray — this time, his entire left lung was drowning in fluid and had collapsed.

Huxley was placed on oxygen but, within hours, he was taken to Westmead Children’s Hospital for specialised care.

In the Pediatric Intensive Care Unit (PICU), as her continued to gasp for air, a machine was helping him to breath.

A doctor told Alisha and Brendan that Huxley would need surgery to drain the fluid from his lungs.

As the clock neared midnight, the parents were asked to leave the PICU and return in the morning, while Huxley was taken into surgery.

“It was the most heartbreaking thing, leaving our baby there alone, so sick,” Alisha says.

That night, the couple didn’t sleep and, when the sun rose, they drove back to Huxley’s bedside — just in time to kiss him goodbye before he was wheeled into surgery.

After an anxious wait, surgeons revealed Huxley had a mass on his lung and requested permission to take a biopsy, to which the parents immediately consented.

“I remember saying to Brendan, ‘What if Huxley has cancer?’,” Alisha recalls.

“Brendan replied with, ‘Why would Huxley have cancer?’.”

An hour-and-a-half later, their baby was awake, having had a few hundred millilitres of fluid drained from his lungs.

His parents met with a room full of specialists, who broke the news that the mass they had uncovered was cancerous.

“I could feel my heart beating in my chest,” Alisha says.

“I looked at Brendan and just started crying. He was crying too.

“I said, ‘Is he going to die?’ and the oncology doctor said, ‘That’s not our plan’.”

Alisha’s mind raced as specialists outlined a radical plan to tackle the mass, indicating to the frantic parents that their approach had a high survival rate.

Huxley was thrown the next day into chemotherapy, designed to shrink the tumour, which took up the entirety of his left lung and which had already begun to wrap around his spine and aorta.

But the day after his first treatment, his doctor revealed the baby’s condition was worse than predicted.

“They then told us that the biopsy results were back and Huxley actually had a malignant rhabdoid tumour with very low survival rates, and that it was aggressive and hard to cure,” the mum says.

Still on breathing support in the PICU, and receiving chemotherapy, Huxley continued to fight.

Because of his high dose of chemotherapy, and Alisha being heavily pregnant, the only time she could hold her little boy was when she was covered from head to toe in PPE.

“This was so heartbreaking as all I wanted to do was kiss my baby and help him, and it was a lot of extra stress on Brendan,” Alisha says.

Adjusting to their new life, they celebrated Huxley’s first birthday on the hospital ward as he bravely underwent numerous rounds of chemotherapy.

Slowly, he was weaned off each machine and, after five lengthy weeks, he was discharged.

Although he wasn’t cancer free, he could finally go home and return to hospital for his regular treatments.

“His treatment included chemotherapy every two weeks, stem cell collection and multiple blood transfusions due to low platelets,” Alisha explains.

Devastatingly for the new parents, doctors found another tumour in Huxley’s neck, which is causing severe nerve pain and restricting movement in his left arm.

The treatment plan now includes radiation on his neck, lung and spine.

During this time, doctors discovered the little boy is a carrier of the SMARCB1 gene, meaning he is more susceptible to cancerous tumours until he is five years old.

Huxley’s condition is a case of “bad luck”, according to genetic specialists, who believe the genetic mutation was not passed down from Alisha or Brendan but was something Huxley himself carries.

Having already undergone six rounds of chemotherapy, Huxley will need to have radiation every day for five weeks.

Doctors are hopeful the treatment plan, and the potential for a new trial drug, will rid his little body of the tumours.

For now, Alisha and Brendan are holding onto that hope.

“Huxley’s prognosis is still unknown,” she says.

“But we remain hopeful he will survive and fight this awful battle.”

Now 14 months old, Huxley continues to put on a brave face despite undergoing multiple treatments every week.

And less than a month ago, he became a big brother, as Alisha and Brenda welcomed a baby girl, Lainey — a ray of sunshine in their dark unknown world.

“He absolutely adores her and is very interested in her, however he is yet to understand the word gentle,” Alisha laughs.

The proud parents beam with pride over their incredible little boy and how to tackles each new treatment.

The couple’s family has started a fundraiser to help Alisha and Brendan, who have had to take time away from their work while they care for their little boy and pay for his treatment.

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