This Singapore mum is 1 of 2 people in the world with a very rare cancerous brain tumour but she's not giving up

It was with a heavy heart that I set out for the National Cancer Centre Singapore (NCCS) to meet a young critically ill patient who had been diagnosed with sarcoma, a rare cancer that develops in the bones or soft tissue.

Now 36, Atika Razak had already undergone three brain surgeries, one liver surgery and one hip surgery over eight years. She was diagnosed with sarcoma in 2015. By 2019, the rare cancer had progressed to Stage 4, where patients typically survive for about a year. She has soldiered on for four.

I had expected it to be a sad meeting. But the woman who walked in surprised me. Something about her struck me as beautiful and uplifting. Any scars from her brain surgery were covered by her hijab.

Outside the room, patiently waiting for her for more than two hours was her husband Abdul Razak Bin Jumain – her teenage sweetheart who had married her despite the cancer.

“Which man wants to marry a sick girl?” she said to me. And yet, there was Razak, eight years after her initial diagnosis, still accompanying her for every hospital visit. Their four-year-old daughter Daanya – whom Atika miraculously delivered while battling advanced cancer – often comes with them. 

That was when I realised why Atika radiated happiness: Behind her heart-wrenching cancer story was a greater love story.

THE BLINDING HEADACHES

In 2014, Atika was only in her late 20s when she started to experience crippling headaches. “I had super bad episodes where my head would throb unbearably and I’d get flashes of white light and sometimes black out,” she recounted.

She saw general practitioners and went to the hospital emergency department, but her rare condition confounded doctors. They thought it was a migraine and sent her away with painkillers. Finally, at her request, she got a referral to see a general surgeon.

“The night before the appointment, the pain got so bad that I couldn’t even open my eyes, and couldn’t walk or talk. My husband, who was then my boyfriend, immediately carried me to the A&E.

“The doctor who saw me suspected something was wrong and consulted a senior doctor. But when he came back, he sent me home with painkillers to wait for my scheduled appointment the next day. I got home at 7am and lay in bed, vomiting every hour,” she said.

By the time Razak drove Atika back to the hospital for her appointment at 3pm that day, she was not cognisant. She woke up in the intensive care unit and was told that she had an 8cm mass in her brain. “They said it was a miracle that I was still walking around,” she recalled.

Two days later, sometime in October 2015, Atika went for her first brain surgery to remove the mass. Her doctors sent the tissue for biopsy and found out that Atika had brain cancer, specifically a type of soft tissue sarcoma.

After the diagnosis, Razak’s family asked Atika to stay with them so that Razak could better take care of her. Just one month later, during a staycation, pus gushed out of her operation wound due to an infection, staining her entire pillow.

She was rushed to the hospital, where she underwent an operation to clean up the infection.

After a few months of medical leave, Atika was indirectly asked to resign from her job as head pastry chef at a cakery chain. “I felt like everything was crumbling down,” she said.

BUILDING A FAMILY AGAINST THE ODDS

But her world did not crumble. With Razak and her family’s emotional and financial support, Atika slowly found her feet and started a small online baking business. A few months later in January 2017, she married Razak at the age of 30.

“There was no romantic proposal because we have been together for so long – since we were 16 or 17. When I am sick, he’s there 24/7, holding my hand when I cry,” she beamed.

Seven months after her wedding, scans showed another brain tumour. Atika underwent radiosurgery to use radiation to kill the cancer cells and shrink the tumour. In June 2018, yet another 0.5cm tumour was detected in her brain.

Before doctors could treat this brain tumour, life threw them another curveball. Atika found out she was pregnant.

“We didn’t even think we could get pregnant in the first place. It was really scary because I didn’t know if I would be able to carry the baby to full-term and give birth to her with all the complications in my body and the medications I was taking,” she said.

Her treatment and scans were put on hold during the pregnancy. She also stopped her baking business. In May 2019, Atika gave birth to a beautiful baby girl, Daanya.

“The moment she was born, she became a pillar of strength for me,” Atika said.

Despite the severity of her health condition, Atika took care of the newborn herself. However, because she suffered from seizures from her brain tumour, Atika and her husband, who is a civil servant, agreed on an emergency code.

“If I were to call him and say nothing, that means I am having a seizure. He would rush home in less than 30 minutes.

A MOTHER’S BATTLE WITH CANCER

Unfortunately, the brain tumour detected just before her pregnancy continued to grow. In April 2020, Atika went for her second brain surgery on the first day of the COVID-19 circuit breaker.

“It was the first time Razak couldn’t come to the hospital to give me moral support. I felt so alone, I was crying like mad,” she recalled.

Seven months later, what Assistant Prof Valerie Yang, an oncologist from NCCS, described as a 10cm “football-sized tumour” was discovered in Atika’s liver. Doctors also found lesions in her sacrum (the triangular bone at the base of the spinal column), spine and hip.

Her cancer had advanced to Stage 4. This was when Atika was referred to Assistant Prof Yang for management of the complex disease.

“Razak was there when the doctor told us. Both of us broke down together,” she said.

“I’ve been very positive for the last few years. But the feeling of being hopeful and positive was all gone at that point. Those were dark days,” she said. Her family helped her pull through.

Sarcomas are already rare but this type of sarcoma, solitary fibrous tumours occurring in a part of the brain known as the ventricles, is even rarer, with 30 cases reported in the world, said Assistant Prof Yang.

Of these, Atika is one of only two known cases globally where the cancer exhibits aggressive behaviour, recurring and spreading to distant parts of the body, added Assistant Prof Yang.

Atika underwent two cycles of chemotherapy, followed by surgery to remove the liver tumour, and was put on drugs that successfully helped to control the cancer for a while.

In December 2021, she underwent a third brain surgery, followed by another four cycles of chemotherapy. She also underwent radiosurgery for her brain tumour in 2022, and immunotherapy in 2023, a treatment that helps the immune system fight cancer cells.

Even though the median survival period for advanced sarcoma cases like hers is around a year, according to Assistant Prof Yang, Atika has fervently fought on for four years.

Despite extensive treatment, Atika’s condition took a turn for the worse early this year. Scans show that her cancer has spread to other parts of her body.

On Jan 4, she underwent surgery to fix a hip fracture that is a result of the sarcoma spreading to the bones. She is currently scheduled for another operation to remove two tumours compressing her spinal cord.

It has been a debilitating battle. But Atika has shielded her daughter from any despair and heartache. Daanya, according to Assistant Prof Yang, is cheeky, intrepid and a ray of sunshine.

“Despite my situation, I feel complete. I feel whole. I may be sick, but I am happy. As Razak always says, every day matters. As long as we have another day to live, we can create more memories together,” she smiled.

As she reflected, a dark cloud passed over her face for an instant. “I have always had this fear of dying – the fear that my daughter would grow up without a mother; not knowing me,” she added wistfully.

At that moment, I was at a loss for words, feeling the deep sorrow of a mother at the thought of leaving a young child behind.

Then, I told her what I knew to be true. Her daughter would not forget her.

And that as Daanya grows up, she would slowly come to understand the great love that gave her mother the strength to deliver her against all odds, and continue to fight to spend each precious day with her.