ThePremierDaily
ThePremierDaily
June 12, 2024 ·  9 min read

The boy who never knew he had cancer: How tragedy led one mum to keep the truth from her dying son

After months of chemo, little Omar’s mum told him ‘he had finished and he was going home’. Her story will move you to tears.

Gheuwan Arja, 41, watched on as her little boy Omar marked the end of his cancer treatment by ringing a bell in hospital.

The mum-of-five had told her son, who was also celebrating his 10th birthday, that this was the end of his excruciating two-month, chemotherapy-led battle with Non-Hodgkin Lymphoma.

But the mum, from the Sydney suburb of Greenacre, knew the treatment hadn’t worked and, in fact, had caused irreparable damage to his body – resulting in 18 surgeries.

Instead, Omar, was being taken home to spend his final few months with his loving family.

“Honestly, I thought I’d fix him,” says Gheuwan, mother to Aisha, Rabieh, Mohamad, Omar and Luay.

“I said to the doctors ‘Don’t worry about it, I’ll get rid of his cancer’.”

Gheuwan with her sons Mohamed and Omar. Credit: Supplied
Omar ringing the bell, with mum Gheuwan by his side. Credit: TikTok/@gewaarja

Nor did she tell him about his previous battle with a brain tumour.

Instead, he believed he had been fighting infections both times.

This was because it wasn’t the first time the mum had experienced the heartbreak of watching her child suffer.

‘My first love’ – Aisha

In 2005, Gheuwan, then 23, and her husband Fadi, then 28, welcomed their first child, Aisha.

They were “over the moon”.

“You do not know what true love is until you have your first child,” Gheuwan tells 7Life.

But the couple’s newborn was diagnosed with Niemann-Pick disease type C – a rare, inherited disease that affects the body’s ability to metabolise fat (cholesterol and lipids) with cells.

Aisha was born with Niemann-Pick disease type C. Credit: Supplied

The disease hadn’t been causing much damage and, as Aisha grew, she developed her own “awesome” personality.

She also became a big sister to Rabieh, the couple’s first son.

“She was very cheeky. Her smile was on another level,” the mum says.

“She was very, very attached to her father, more than me. Her dad was her everything.”

However, by the time the little girl was two, the disease began to impact her brain.

And when she was three, “she stopped talking, she stopped walking, stopped eating” and had difficultly breathing.

“(It) really took a toll on her,” the mum says, adding that her daughter needed to have feeding tubes inserted into her stomach.

However, in 2009, a feeding tube was accidentally placed into her lungs.

Aisha passed away when she was just four. Credit: Supplied

The little girl developed pneumonia and was placed on a CPAP machine, in ICU, so she could breathe.

“They were telling us to say our goodbyes to her that day,” Gheuwan says.

“Then she saw her father … and she did this raspberry, when they breathe this breath of life and life comes back into them.”

Three weeks later, Aisha, with all the equipment she needed, was taken home, where she continued her battle.

Eight months later – aged just four – she passed away in her bed, surrounded by her loving family.

“I think her dad was her strength. She fought for us to stay a little bit longer,” the mum says of Aisha’s death on February 23, 2009.

“She was my first love and my first heartbreak.”

Mohamed

Five months after Aisha passed, Gheuwan and Fadi discovered they were pregnant with their third child.

“I think for me that sort of, not helped me heal, but it was like a distraction,” Gheuwan says.

In 2010, the couple and big brother-to-be Rabieh, welcomed Mohamed.

“I remember looking at him when he was born and just screaming out, ‘Oh my god he looks exactly like her (Aisha)‘,” Gheuwan says.

Mohamed looked just like his big sister Aisha when he was born. Credit: Supplied

Growing up, Mohamed was “the most cheekiest, most misunderstood kid ever” who developed a love for sport, especially “footy” (rugby league).

The fit, healthy and active youngster became a big brother himself, with Gheuwan and Fadi welcoming sons Omar in 2011 and Luay in 2015.

In 2019, when Mohamed was nine, he and his family spent the day at a beach in Cronulla, where he swam and played with his brothers and cousins.

Mohamed was diagnosed with a brain tumour in 2019 and passed just two weeks later. Credit: Supplied

“He had finished a swim and I saw him limping to one side,” Gheuwan remembers.

“As he was walking to me, he tripped over. He was talking to me, and he was slurring.

“We called an ambulance. (They) came and thought he was having a stroke.

“At this point (Mohamed) was so excited, like he’s sitting in the ambulance with the sirens on and he’s loving life.

“We didn’t know what was coming.

“I was freaking out. Like, how does a nine-year-old have a stroke?”

An urgent MRI found a rapidly growing tumour in the nine-year-old’s brain, leading doctors to perform a biopsy.

“The last thing he said to me was, ‘Mum, I’m hungry. I need to eat and I want to eat Hungry Jacks’,” she remembers.

“And I said to him, ‘Look when you come out of your surgery, I’ll get you Hungry Jacks, whatever you want’.”

Brothers, Omar, left, Luay, bottom, Mohamed, top and Rabieh, right. Credit: Supplied

But after the operation, Mohamed wasn’t waking up.

Doctors wanted to start radiation and chemotherapy, but advised that the rate of survival was less than one per cent.

And, even with this treatment, which would cause him pain and discomfort, he would only have five weeks left.

“Why would I put my son in pain and do radiation and chemo, and he’s going to die,” Gheuwan says.

“They’re telling me there’s no hope.”

Just 12 days after discovering the brain tumour, the parents were told Mohamed was going to die.

“It was his brother (Luay’s) birthday. I started screaming at him, ‘You’re not passing today’,” she says.

“He couldn’t even hear me. I go to him, ‘You’re not going to pass’.”

Mohamed slipped away one night later. It was February 3, 2019 – almost 10 years to the day since Aisha died.

“Before he did, I kissed him, I kissed him, kissed him, kissed him,” Gheuwan remembers.

“I go, ‘Whenever you’re ready, go be with your sister. I love you’.”

Omar

Following Mohamed’s death, doctors discovered that he had mismatch repair syndrome, an inherited condition that increases a person’s risk of developing certain cancers.

It was required that all of Gheuwan and Fadi’s children be tested to see if they, too, had the condition.

Rabieh and Luay were fine.

But nine-year-old Omar had the syndrome and was to undergo surveillance.

In December 2019 – the same year he lost his brother Mohamed – it was discovered that Omar also had a brain tumour.

Before he was diagnosed with Non-hodgkin lymphoma, Omar was diagnosed with a brain tumour. Credit: Supplied

He underwent six weeks of radiation while his mum practised forms of holistic healing.

Gheuwan never told her son that he had a tumour – instead, she said the treatment was for an ear infection.

“I had a couple of nurses telling me that I should tell him,” the mum says.

“I told the hospital, ‘The minute you tell him he has cancer, my son’s not going to fight to survive, because he’s seen his brother pass away’.

“He didn’t question it, he went in for his radiation. The tumour went within six weeks.”

Omar and Rabieh Arja. Credit: Supplied

Every three months following radiation, Omar had routine MRIs, and the tumour never came back.

The family seemed to be in the clear, until June 2021 – when Omar was diagnosed with Non-Hodgkin Lymphoma.

“My gut was saying ‘No, don’t do chemo, don’t do chemo’,” the mum says, but it was decided Omar would be subjected to two months of intense chemotherapy.

The little boy experienced several complications as a result of the gruelling treatment.

“Three weeks into chemo, his intestines exploded and then they had to do an eight-hour surgery,” Gheuwan says.

They would stop the chemotherapy, then start again, but every time Omar experienced severe pain.

“He never complained of pain, so when Omar complained of pain, you needed to believe him,” the mum says.

“He was like a man. He would never tell you he was in pain. I called him ‘my little man’… very strong man.”

Doctors decided to stop chemotherapy and tried to find other options. Credit: Supplied

After two months, doctors decided to stop chemotherapy and tried to find alternative treatments.

“He (the head doctor) called Paris, called Toronto, called all these countries to see if there was any other way to treat him. There wasn’t,” Gheuwan says.

“They were like, ‘We’re not going to do this anymore. We’re not going to do chemo, he has to go home and spend time with his family’.

“That was the day he rang the bell … I told him he had finished and he was going home.”

The mum tried her hardest to find holistic ways to help her son, such as CBD oil and black seed oil.

“They told me he wasn’t going to recover to walk. I made him watch a lot of (reality TV show) SAS to keep him mentally strong,” the mum says.

“He started getting up and walking again.”

Omar passed away peacefully in January 2022. Credit: Supplied

However, the impacts of chemotherapy were too great.

“Chemo had already destroyed his body … the heart wasn’t working properly, his kidneys weren’t working properly,” she explains.

On January 14, 2022, Omar passed away. He was 10 years old.

“I knew that he was going to go, and I started praying and saying, ‘God please make it quick for him, don’t let him suffer’,” Gheuwan says.

“I don’t think he was suffering. They had him sleeping and he passed away with his father (at his side).

“When reality kicked in, I collapsed – I had hope until the last day – I never thought that was going to happen.”

Message of hope

The mental toll of losing three children weighs heavily on Gheuwan.

But the mum does so much to not enter “the dark place”.

“It takes so much work that no one sees. Everyone is like, ‘Oh she’s so strong’,” she says.

“I wake up at five in the morning, I go for a walk on the beach, I do research on how to heal mentally.

“You’re never the same again, and I’m not the person I was.

“Nobody matters but my family now, I want to spend as much time and do things with my kids as much as I can because I want to appreciate them.

“I pray a lot, and I ask God to always give me a positive mindset. For me that was a big thing, my faith.

“I know they’re all together, I know God guaranteed them to heaven.”

From left, brothers Luay, Rabieh and Omar. Credit: Supplied
The Arja family, from left, Rabieh, Fai and Gheuwan, in front Luay and Omar. Credit: Supplied

The mum wants other parents to know that “life does go on”.

“Don’t give up on life. You do go through things in life but life is still beautiful,” she says.

“You want your children to fight for life – how dare you give up on life. Don’t – that’s how I see it.

“If my son fought for his life how dare I give up on mine.”

Gheuwan, Fadi, now 46, Rabieh, 16, and Luay, eight, will never forget Aisha, Mohamed and Omar.

“Every one of them was special, they all had something about them,” Gheuwan says.

“They gave us all the love, they were love itself.

“I always tell them I love them before I go to sleep.

And she’s “making the most memories” she can with Rabieh and Luay.

“You don’t know when your last photo’s going to be with your child,” she says.

Written By: Sarah Fittock.

This article was originally published on 7 News.