TRUE STORY: "My 9-year-old son had 5 brain tumours."

PHOTOGRAPH: Vernon Wong

Up until the age of six, Javier Lim (pictured) was a healthy and active preschooler whose idea of a fun day was an afternoon jaunt at the playground.

But all that changed when doctors found tumours in his brain, each about the size of a marble, three years ago.

Now nine years old, Javier Lim has spent a third of his childhood battling multiple brain tumours. His skull has been cut opened and stitched up by surgeons about 10 times, to remove the tumours or to fix post-surgery complications.

Today, the long, visible scars snaking through the back and front of his skull are physical proof of the painful surgeries he has experienced over the last three years.

The Primary 3 student also has a drainage tube, known as a shunt, permanently implanted inside his body to relieve pressure on his brain.

Part of the device is visible under Javier’s skin on his back, which means he can no longer engage in the usual physical activities that most kids take for granted; just going down a slide in the playground might be enough to damage the device.

According to Assistant Professor David Low, vicepresident of the Brain Tumour Society Singapore (BTSS), about 40 to 50 operations are carried out on children with brain tumours in restructured hospitals every year.

There are currently no formal statistics on the number of children with brain tumours here, which can be difficult to track as there are over 120 different types, says Prof Low, who is the head of Neurosurgical Service at KK Women’s and Children’s Hospital, and consultant neurosurgeon at the National Neuroscience Institute.

 

Something’s not right 
Javier’s parents found out about his brain tumour by chance, after taking him to see an eye doctor in 2013. His teachers had observed that he would tilt his head to one side while doing school work.

“Initially, we thought he had a ‘lazy eye’, but the eye doctors noticed something wasn’t quite right. When scans revealed not one, but two tumours in his brain, we were so shocked and devastated,” says his mother Sharon, 35, an assistant teacher.

The diagnosis was only the beginning of a “horrible nightmare” for the Lims, who have a younger daughter aged four.

 

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Sharon shares that Javier’s first major brain operation was especially hard on everyone. Waiting out the eight-hour surgery was nerve-racking enough for his parents, but the aftermath was even worse when he woke up screaming his lungs out.

Although he was then only six, Javier still vividly remembers the intense pain.

“I remember screaming like crazy because my head hurt so much. That was the most painful thing I have ever experienced. Having IV drips poking into my skin hurts a lot, too,” he recalls.

As their son’s agonising screams reverberated through the intensive care unit, his parents could only watch helplessly.

“That night, the doctors had to increase the dosage of his painkillers so that he could sleep. It was very stressful for us. As parents, there was nothing we could do to ease his pain,” says his father Ken, 39, a warehouse assistant.

 

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The weeks following the surgery were another uphill battle as Javier struggled to regain his ability to walk, and control his movements and speech, which were temporarily affected by the surgery. It took him about six weeks to get back to normal.

 

A new tumour every year
But life, as the Lims would find out afterwards, would never be “normal” again. For every tumour the doctors removed, a new one would appear in the same area every subsequent year.

The worst is still not over. In September this year, scans revealed another new growth in Javier’s brain: it is his fifth tumour.

“We couldn’t believe our ears when the doctor told us another tumour has popped up in Javier’s brain. On hearing the news, I just sat there and cried my eyes out. What else could I do?” says Sharon.

Javier will undergo another brain surgery this month to remove the growth in his brain. Coincidentally, November is also the month where BTSS will hold a Brain Tumour Awareness Day campaign to raise awareness of brain tumours.

Sharon says no one can explain why Javier gets such tumours – which are said to be more common in older adults – at such a young age.

His tumours are considered benign (non-cancerous). But any tumour in the brain, whether it is cancerous or not, can be dangerous and lifethreatening, says Prof Low, who is treating Javier.

It is also possible for a benign tumour to recur, although the risk is much lower compared to an aggressive cancerous tumour, he adds. In addition, treatment such as surgery also entails certain risks and complications.

Although Javier always manages to bounce back after each surgery, being away from school for long periods of time has affected his studies.

While on treatment, he skipped most of Primary 1 and about a third of P2. There is a high chance he will be retained in P3 next year as he is unable to cope with his school work.

Javier’s long-drawn illness has also taken a toll on his loved ones. Sharon admits that she feels guilty about neglecting her daughter, who is cared for by her grandparents.

 

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“I know that she sometimes feels jealous because we are always focusing on Javier. I feel really bad about it,” she says.

On the work front, Ken worries about his job. “So far, I’ve taken about three months of unpaid leave to look after Javier after his operations.

I wonder if my job would still be stable if I have to continue to take leave,” he says.

 

Taking it one day at a time
Still, the Lims count their blessings that most of their son’s medical expenses, which add up to about $100,000, are covered by insurance.

They are also grateful to the kind-hearted people, including members from the BTSS support group, whom they have met over the last three years.

Sharon shares how her boss and colleagues have been nothing but supportive of her situation. Once, they even went to the extent of organising a fundraising project to help her family get through a particularly difficult month.

Right now, Sharon and Ken are bracing themselves for Javier’s next surgery. They hope that it will be a smooth-sailing one with no further complications.

“Javier cannot escape undergoing surgery, because the new tumour has affected the nerves on the right side of his face and his sense of pain. Because of this, he has been over-rubbing his eyes, causing damage to his cornea,” Sharon explains.

“The doctor said that if he continues like this, he might even lose his eyesight.”

Having gone through so much in the last few years, Sharon and Ken say they don’t dare to harbour expectations; they only wish for their son to be happy.

“With Javier, we don’t make any plans or ask that he scores As in school. We only hope that one day, he will be tumour-free,” Sharon says.

Meanwhile, the optimistic boy has made plans to zoom around in one of the supercars that will be featured at BTSS’ car rally event on Nov 6, in conjunction with Brain Tumour Awareness Day.

BTSS members and beneficiaries like Javier will be able to enjoy an adrenalinepumping ride in the supercars featured at the event.

His surgery was intentionally scheduled to take place four days later so he could participate in the event.

“My plan is to have lots of fun at this year’s car rally,” he says.

“When I grow up, I would also love to be a bus driver, so I can drive people around.”

This article was originally published in Young Parents.

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