Tuesday, September 24

Battle against childhood cancer


In 2013, the RM2.6 million SCCS building began operation with a 13-room space for various functions, including administration, meetings and recreational activities.

MOST of us have heard about Sarawak Children’s Cancer Society (SCCS) and its annual Sarawak-wide ‘Go Bald’ fundraising campaign to help cancer patients.

Over the past 18 years, SCCS has grown from a small support group, comprising parents of children affected by paediatric cancer to an established non-profit organisation (NGO) that strives to raise awareness and educate society at large on childhood cancer.

The struggles and challenges SCCS faced and the length it went to in carrying out its public-spirited mission have taken the charitable NGO to where it is today – shaping its reputation, in the process, as a dedicated anti-childhood cancer advocate.

A recreational room for patients and caregivers.

The beginning

SCCS was set up in 1999 by a group of parents whose children had been diagnosed with childhood cancer. The parents discovered that coming together enabled them to find ways to support one another.

“Back then, we lacked the resources and the understanding of the diseases that affected our children. It was the common desire to improve our situation that encouraged us to bond and help each other,” SCCS first committee president Peter Wong said.

“The diagnosis of our children, of course, came as a shock to us. The upside was that it motivated us to band together to support families, affected by childhood cancer, in whatever way we could.”

With the encouragement of Dr Ong Gek Bee, head of Paediatric Oncology Ward at the Sarawak General Hospital (SGH), the parents formed a pro tem working committee before SCCS was formally registered under the Registrar of Societies (ROS) in November 2001.

As part of SCCS’ Wishing Star project, volunteers arranged a helicopter ride for palliative patients.

The challenges

SSCS started operating at its first halfway home, an old government semi-detached house at Maxwell Road, Kuching, the same year it was registered.

In the beginning, it had its fair share of challenges such as limited funds and very little exposure, according to Gary Ho, one of the first committee members.

As the society soon discovered, outstation families who came for treatment at SGH faced financial difficulties, especially for accommodation and transportation.

“For them, it could be costly to rent a temporary place, buy food and move around. Sometimes, their stay had to be extended to six months to complete the treatment. So it was a burden to those who couldn’t afford it,” Ho said.

Hence, the purpose of the halfway home is to ease the burden of needy families. This safe harbour facility can house five families at a time. It has three rooms that can fit 12 people, a living room, and a kitchen.

“Since we’re providing the facility for free, it’s quite often there are six to eight families needing accommodation, resulting in quite a limited living space for everyone,” Ho noted.

SCCS had struggled financially in the first several years following its inception. In 2002, it started raising funds via charity events and also received contributions from the public and benevolent organisations.

A portion of the funds and contributions was used to run the halfway home while the rest to support specialised medical procedures (or treatments) and needy patients.

Initially, the working committee consisted of parents and volunteers who were motivated to reach out to the poor families by a genuine desire to help.

“At that time, we lacked the resources to carry out our programmes, raise funds and deal with other issues. There was so much we wanted to accomplish to provide medical and financial aid but couldn’t due to lack of funds.

“Fortunately, the committee was able to find committed volunteers with strong corporate experience,” Ho recalled.

According to him, through hard work, the committee had been able to gain public support and receive assistance from companies and service organisations.

This, he added, enabled them to purchase a blood analyser machine, the first of many important equipment they donated to the Paediatric Oncology Department at SGH.

“The machine saves a lot of time. Medical decisions could be made immediately and chemotherapy given in a timely manner.”

Participants of the Youth Camp.

Major projects

The ‘Go Bald’ campaign, which started exactly 10 years ago, has helped SCCS to dramatically increase the funds it needs to implement support and service programmes.

To date, SCCS members have gathered more than 1,000 people across Sarawak for the campaign with the SCCS committee making up 70 per cent of patients’ parents and volunteers taking up the remaining 30 per cent.

In 2013, after years of struggling, fundraising and assistance from various quarters, SCCS finally had a place to call its own – a two-storey building at Lot 5493, Lorong 15, Taman Desa Wira, Batu Kawa, Kuching, built at the cost of RM2.6 million.

The new 13-room facility is a breath of fresh air for families who hitherto have to bear with the crammed conditions at the old centre while seeking treatment at SGH.

Since its opening, the centre has housed over 250 families from all over Sarawak. It has become the main avenue for the different functions of SCCS such as support and service, administration and marketing.

The second halfway home in Miri near Miri Hospital was opened in early 2016 and meant to cater for outstation patients and their caregivers in northern Sarawak.

The three-room centre can accommodate five patients and their caregivers at any one time.

SCCS regularly provides basic education on voluntary basis to patients who have to be out of school during treatment.

Moreover, it continues to work with patients in the ward on craftworks and other activities, apart from expanding its scope on education, including supporting nurses and doctors for training to improve patients care.

SCCS often works closely with the medical team at SGH’s Paediatric Oncology 2A Ward, providing support by sponsoring various lab tests and donations of various medical consumables.

In 2017, the society spent about RM97,000 on medical support and training for medical personnel in the hope to improve the level of care and understanding of the latest advancement in Paediatric Oncology.

Last year, it donated medical equipment – ventilator, suction pump, integrated flow generator, oxygen concentrators rechargeable battery – valued at RM72,500 as well as five TV sets, inclusive of Astro services, worth RM8,000 to SGH’s Paediatric Oncology Ward 2A and its isolation rooms to help enhance the services and comfort for patients during treatment.

SCCS’s first halfway house started operation in 1999 at Maxwell Road, Kuching. It was an old government house with three rooms, a living room and a kitchen.

SCCS recreational activities

So far, some of the significant projects implemented by SCCS, are aimed at educating the public on  childhood cancer, at the same time, helping cancer survivors restore their confidence through helping others.

Colour Rush, a 5km colourful charity fun run, is held in September to mark Childhood Cancer Awareness Month.

The Gold Ribbon Week, launched in 2016, is a week-long exhibition held throughout Sarawak to raise public awareness on childhood cancer. It also shares information about the society.

The Youth Camp started in 2013 as an initiative to motivate cancer survivors between 14 to 25 to lead a normal productive life. It also aims to boost the self-confidence of those who have gone through the traumatic experience of childhood cancer at a younger age.

To date, the camp has seen 127 childhood cancer survivor participants.

The Golden Child Family Day has been held since 200, as an annual recreational event to provide families with an avenue to temporarily get away from the trauma and physical and emotional drains of the cancer treatment process.

Volunteers celebrating a palliative patient’s birthday. Theme party is one of SCCS’ Wishing Star project to fulfil the palliative patient’s final wish.

Holistic support

Undeniably, battling cancer can take a physical and mental toll on patients and families. Realising this, SCCS has taken a holistic approach in providing care and relief through its support services in the form of palliative care service, the Wishing Star Project and the bereavement and post-bereavement support and the Memorial Day.

SCCS’ palliative care services started in 2014 to provide better assistance and support to patients and families when treatment has poor outcome and cure is less plausible. The services include weekly home visits by the medical team to assess the physical, emotional and financial needs of child patients and care-givers.

The Wishing Star Project has, since its implementation in 2014, granted palliative patients 41 wishes – from theme parties to trips to Legoland. It focuses on enhancing the quality of life of palliative patients by creating meaningful and magical moments for them and granting their final wish.

To support families whose children have died from cancer, a bereavement donation of RM3,000, scheduled counselling follow-ups or home visits and a special annual Memorial Day are organised to gather and help them remember the young patients who succumbed after fighting cancer with great courage.