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Devastated mum fights for son's legacy

A devastated mum has taken it upon herself to raise awareness for a rare form of brain cancer, which claimed the life of her three-year-old son Angus.

Jessica Johns and husband Hamish were faced with the horrible news that Angus had brain cancer in May last year, and despite multiple surgeries and aggressive treatment, their little boy lost his battle with the disease in March – just 10 months later.

Despite the heartbreak, Jessica has decided to honour Angus’ memory by studying to become a nurse, and helping Cure Brain Cancer Foundation raise funds for vital research into this rare form of the disease so no other parent has to go through the same ordeal.

“Watching your baby boy go through this was very hard. We are heartbroken, but Angus fought to the very end. He didn’t give up,” Jess tells Be exclusively.

Little Angus lost his fight in March. Photo: Supplied
Little Angus lost his fight in March. Photo: Supplied

“After what he went through I decided I wanted to go to university to do my nursing degree, and help families going through the same thing," she says.

“I also want everyone to know about this sort of tumour. It is very aggressive – it took our Angus in just 10 months.”

It was around Easter 2017 when Jess started noticing that Angus was unsteady on his feet, he had recently recovered from a broken leg and doctors said his unsteadiness was normal.

Jess first noticed something wasn't right around Easter 2017. Photo: Supplied
Jess first noticed something wasn't right around Easter 2017. Photo: Supplied

But on May 30 Angus had a stroke which caused paralysis to the right side of his body. His parents took him straight to Logan Hospital, Queensland, where doctors did a scan and spotted a mass on his brain.

Angus was transferred to Lady Cliento Hospital in Brisbane, where an MRI scan revealed he had a large golf ball size tumour on his brain stem, and it had caused a bleed on the brain resulting in the stroke.

His first brain surgery was a de-bulking procedure which went for 5.5 hours where doctors tried to remove as much of the tumour as possible. A biopsy was also done and 10 days later, Jess and Hamish were given the horrible news.

His parents received the devastating diagnosis in May 2017. Photo: Supplied
His parents received the devastating diagnosis in May 2017. Photo: Supplied

Angus had a rare form of brain cancer - Embryonal tumour with abundant neuropil and true rosettes (ETANTR). There are less than 60 children world-wide currently that have this tumour, with only 300 total reported cases.

It is a deadly form of cancer that affects mainly children below the age of four, and is almost always fatal, event with aggressive treatment.

Jess says having to watch her son go through four rounds of chemotherapy was ‘horrible’ but she was so proud of how strong he was.

“Even though he had side effects he didn’t let them stop him,” Jess tells us. “We could see the toll it was taking on him but he was still full of life and just wanted to run and play.”

Despite chemo, Jess says Angus just wanted to be a little boy and play. Photo: Supplied
Despite chemo, Jess says Angus just wanted to be a little boy and play. Photo: Supplied

Sadly, the chemo was ineffective. The tumour had grown back to its original size along with three new ones. While Angus underwent another surgery, more aggressive this time, he never fully recovered.

“He was being tube feed, couldn’t walk, talk, or crawl. Our hearts just ached,” Jess says.

Though he did slowly start to crawl and stand, he needed radiation treatment and doctors only gave him a 1 per cent chance of making it to 10 years old.

“We were told most kids make 12 to 18 months post diagnosis,” Jess says. “Angus pushed through 30 days radiation like a little trooper. He kept on smiling not matter what.”

Angus was given just 1 per cent to make it to 10 years old. Photo: Supplied
Angus was given just 1 per cent to make it to 10 years old. Photo: Supplied

By January, an MRI revealed tumours had spread to his spine, and in March, Angus was admitted to hospital and needed surgery for fluid on his brain. Another MRI showed a total of nine brain tumours and at least five on his spine.

“Our world shattered even more,” Jess remembers, saying one of the hardest things was having to tell Angus’ four sisters – Paige, Hailey, Tamika, and Sophia – that their brother wasn’t going to make it.

“They are such strong young ladies and would put a smile on Angus’ face when he would see them,” their proud mum says.

Jess and Hamish were able to bring Angus home to his family on palliative care and on Sunday March 25 Angus passed away.

Sadly the aggressive treatment was ineffective. Photo: Supplied
Sadly the aggressive treatment was ineffective. Photo: Supplied

Jess is hoping Angus’ legacy lives on as she sets out on her nursing degree, and to raise awareness for Cure Brain Cancer Foundation, which is funding research into paediatric brain tumours.

“Brain cancer kills more Australian children than any other cancer and it has a devastating effect on young families,” Michelle Stewart, CEO of Cure Brain Cancer Foundation, tells Be.

“We hope the research projects we’re funding right now will uncover vital new information about these types of tumours.”

Jess hopes research launching this year will help the next child. Photo: Supplied
Jess hopes research launching this year will help the next child. Photo: Supplied

Jess echoes that sentiment.

“I feel very hopeful that they can get answers and hopefully be able to help the next child,” Jess tells us. “That's why I gave Angus' tumours to the tumour bank for research.”

You can donate towards the research in Angus’ name here.

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