FOR some parents, the first sign is not dramatic at all.
It may begin with a lingering fever that refuses to go away, bruises appearing too easily after normal play, unusual tiredness, frequent headaches, or a gradual loss of weight and appetite.
For others, it is something as simple as a photograph — a strange white reflection staring back from one eye.
Few parents immediately think about cancer.
When people hear the word “cancer”, many automatically associate it with adults — someone older, someone who has spent years smoking, or someone whose illness developed slowly over time.
Rarely do people imagine a toddler enduring rounds of chemotherapy, children losing their hair before they have properly learned to write their own names, or parents trying to comfort a young child through painful medical procedures they themselves barely understand.
Yet childhood cancer exists — quietly, painfully and often unexpectedly.
In many cases, parents only realise something is seriously wrong after weeks or even months of repeated visits to clinics and hospitals.
Unlike many adult cancers, childhood cancers are generally not linked to lifestyle factors such as smoking, unhealthy diets or lack of exercise.
Information published by The Malaysian Society of Paediatric Haematology and Oncology (MASPHO) explains that cancer occurs when abnormal cells in the body begin growing uncontrollably.
Instead of dying naturally, these cells continue multiplying and may eventually form tumours or interfere with normal body functions.
Cancer develops because of damage to DNA — the genetic material that controls how cells grow and function.
In many cases, however, the exact cause remains unknown.
MASPHO also stresses that childhood cancers are not infectious and that parents should not blame themselves if their child develops the disease. Globally, around 400,000 children and adolescents are diagnosed with cancer each year.
Although childhood cancer remains one of the leading causes of disease-related deaths among children worldwide, survival rates have improved significantly over the past few decades due to advances in diagnosis, treatment and supportive care.
In high-income countries, survival rates can reach up to 80 per cent.
However, outcomes remain significantly lower in many developing nations where access to specialised treatment and support services can be limited.
In Malaysia, paediatric cancer incidence is estimated at 77.4 cases per million children below the age of 15. Data from the Malaysian National Cancer Registry recorded 4,303 childhood cancer cases between 2012 and 2016.
Among these, children aged four and below accounted for the highest number of cases at 1,348, followed by 763 cases involving children aged five to nine.
The figures serve as a sobering reminder that childhood cancer can affect even the youngest among us.
Cancer in children
Consultant Paediatric HematoOncologist Dr Ong Eng-Joe said the most common childhood cancers seen in Sarawak include leukaemia, brain cancers and lymphoma.
One of the greatest challenges surrounding childhood cancer, he explained, is that the symptoms often resemble common childhood illnesses.
Leukaemia — a cancer affecting the blood and bone marrow — remains the most common childhood cancer worldwide.
Statistics published in the National Cancer Society Malaysia (NCSM) Policy Brief 2024 showed leukaemia was the most frequently reported childhood cancer in the country.
Symptoms often include persistent fever, pale appearance, easy bruising or bleeding, swollen lymph nodes, frequent infections, fatigue, unexplained weight loss and loss of appetite.
At first glance, many of these symptoms may appear harmless.
“A pale child may simply be assumed to be not eating properly; bruises may be blamed on active play and fever may be attributed to a viral infection.
But in some cases, these symptoms continue because something far more serious is happening inside the body,” Dr Ong said.
He explained that childhood leukaemia occurs when abnormal white blood cells multiply rapidly in the bone marrow, affecting the body’s ability to produce healthy blood cells.
“This is why children with leukaemia may have prolonged fever for more than five days or frequent episodes of fever almost every week, bruise or bleed easily, or look pale,” he added.
When symptoms are misunderstood
Brain cancers are another major childhood cancer seen in Sarawak.
Cancers involving the brain and nervous system are also among the leading childhood cancers affecting Malaysian children up to the age of nine.
Symptoms can include persistent early morning headaches, nausea or vomiting upon waking, difficulties with balance and coordination, behavioural changes, blurred vision and weakness on one side of the body.
Dr Ong said many parents do not initially suspect anything serious because some of these symptoms are commonly associated with less serious conditions.
“Persistent headaches are sometimes thought to be caused by hot weather, tiredness or stress.
Sometimes parents may assume their child is using it as a reason to skip school.
“It is this overlap between ordinary childhood complaints and serious warning signs that often makes childhood brain cancer difficult to detect early,” he explained.
Another common childhood cancer is lymphoma, which affects the lymphatic system — an important part of the body’s immune defence.
Children with lymphoma may develop swollen lymph nodes around the neck, armpits or groin, prolonged fever, night sweats, severe itchiness, fatigue, unexplained weight loss and appetite loss.
Because swollen lymph nodes are common during childhood infections, some parents may not immediately recognise the seriousness of the condition.
However, Dr Ong said lymphoma-related swelling tends to persist and gradually enlarge if left untreated.
He also highlighted retinoblastoma as the most common form of eye cancer in children.
One of its most recognisable warning signs is a white reflection in the pupil, often noticed in photographs taken using flash.
Other symptoms may include squinting, visual problems or swelling of the eye.
“The white reflection in the pupil looks like a ‘cat’s eye’ appearance.
Some parents think the reflection looks funny or cute and do not realise it could be a sinister sign of eye cancer,” he said.
For Dr Ong, public awareness remains one of the most important factors in improving outcomes.
“The earlier cancer is detected, the greater the chances of successful treatment. Sometimes, recognising that a persistent fever is not ‘just a fever’ may end up saving a child’s life,” he said.
The realities of treatment
Recognising the symptoms, however, is only the beginning of a much longer journey.
While childhood cancer survival rates have improved significantly, treatment remains lengthy, physically demanding and emotionally exhausting for both the child and their family.
MASPHO notes that more than 70 per cent of children with cancer today can be cured, although survival rates vary depending on the type of cancer and how early it is diagnosed.
Treatment often involves a combination of surgery, chemotherapy and radiotherapy.
Some children may also require a haematopoietic stem cell transplant, more commonly known as a bone marrow transplant.
Before treatment begins, children typically undergo numerous tests to determine the exact type of cancer and whether it has spread.
Apart from routine blood tests and X-rays, investigations may include bone marrow aspiration, biopsies, lumbar punctures and advanced imaging scans.
Although some parents become anxious when treatment does not start immediately after admission, doctors often need time to confirm the diagnosis, determine the stage of the cancer and develop the most appropriate treatment plan.
Once treatment begins, life can change almost overnight.
Hospital visits become frequent.
Children who were once running around playgrounds may suddenly spend long hours in wards, treatment rooms and clinics. The physical toll can be immense.
Different chemotherapy drugs produce different side effects, but common reactions include nausea, vomiting, infections, mouth ulcers, fatigue and hair loss.
Hair loss may begin within weeks of starting chemotherapy.
Children undergoing treatment may also struggle with poor appetite and weight loss, either because of the disease itself or the effects of treatment.
Many are forced to miss school, spend less time with friends and adapt to a daily routine centred around medical appointments and recovery.
More than just a medical diagnosis
For many families, Dr Ong said the challenge extends far beyond medical treatment.
The moment cancer affects a child, it also affects parents, siblings and the wider family.
“Treatment is generally long and challenging.
It can disrupt family life significantly,” he said.
Although treatment at government healthcare facilities is highly subsidised and free for Malaysian schoolchildren studying in government schools, many families still face financial strain because caring for a child with cancer often affects their ability to work.
Dr Ong pointed out that families with preschool children receiving treatment at government healthcare facilities are still required to pay certain medical fees.
“For some parents, caring for a child with cancer means putting careers, businesses and even daily life on hold.
“Families from rural areas may also need to spend long periods in Kuching to ensure their child can continue receiving treatment.
“Transportation, accommodation, meals and caregiving responsibilities can quickly become overwhelming,” he said.
Beyond financial concerns, families often face emotional stress, anxiety and uncertainty as they navigate months or even years of treatment.
The children at the centre of the battle
At the centre of it all are the children themselves.
Despite enduring painful procedures, lengthy hospital stays and the side effects of treatment, Dr Ong said many children demonstrate remarkable courage.
“They cope very bravely,” he said.
However, not every family is able to complete treatment successfully.
Financial hardship remains one of the greatest barriers to ensuring consistent treatment, particularly for families from rural and underserved communities.
“Treatment abandonment is a very significant problem in many developing countries because families cannot afford to continue the long and challenging treatment regime required for most childhood cancers.
“This means some children do not complete treatment because their families run out of resources or support,” he said.
For doctors, this remains one of the most heartbreaking aspects of childhood cancer care because many cancers can be successfully treated if children are able to complete the full course of treatment.
Help beyond medical treatment
This is where organisations such as the Sarawak Children’s Cancer Society (SCCS) become critically important.
While hospitals focus on medical care, organisations like SCCS help families navigate many of the challenges that arise outside the hospital ward.
Dr Ong, who serves as one of SCCS’s medical advisors, said the organisation provides a wide range of assistance, including subsistence allowances, support for costly treatments such as immunotherapy, assistance with bone marrow transplant expenses, access to quality chemotherapy medications, as well as medical and prosthetic devices that may not be readily available in public hospitals.
Beyond financial aid, SCCS also provides psychosocial support for patients and families — a form of assistance that is often less visible but no less important.
“Cancer treatment affects not only the child physically, but also the emotional and mental wellbeing of the family.
“Sometimes, what families need most is simply someone willing to listen, guide and support them through difficult times, especially at diagnosis or when their child is very unwell,” he said.
For many families in Sarawak, SCCS has become far more than a charitable organisation.
It has become a source of practical assistance, emotional support and hope during some of the most difficult moments of their lives.
And while doctors continue fighting the disease inside hospital wards, organisations such as SCCS help families fight the battles that take place beyond them — ensuring that no child, and no family, has to face childhood cancer alone.
• In Part Two of this special report, Sarawak Tribune takes a closer look at SCCS’ journey since its establishment in 1999, the services it provides, and how a group formed by parents of children with cancer grew into a vital lifeline for families across Sarawak.
