There is always hope with education and access to treatment
PART 2
The 2016 Colour Rush run event in Miri attracted a record crowd.
THE Sarawak Children’s Cancer Society (SCCS), which is celebrating its 20th anniversary this year, has always strived to raise awareness of and educate society on the signs and symptoms of childhood cancer.
“It’s very important for SCCS to do this because we realise many people still do not know about childhood cancer – from being completely unaware of such a disease to thinking it may be contagious or even caused by negligent caregivers,” SCCS president Jocelyn Hee said.
About 70 children are diagnosed with cancer in Sarawak every year and the causes are often unknown.
Even so, it’s equally important to educate the public that not all cancers are untreatable and there is always hope with access to treatment.
“Due to significant progress in cancer research and treatment as well as awareness raised of childhood cancer, survival rates have been encouraging, especially in high income societies.
“So, we believe with better access to treatment and care, there is hope of a future for cancer-stricken children,” she said.
Hee (right) with Datuk Lorna Chan at the Colour Rush run event in Miri last year.
Common paediatric cancers
According to a compiled record of paediatric cancers, based on the cases SCCS has handled Sarawak-wide, the common types are leukaemia, Hodgkin’s lymphoma, non-Hodgkin’s lymphoma, neuroblastoma, brain cancer, liver cancer, adrenal, soft tissue sarcoma, kidney cancer, and retinoblastoma.
Statistics on general childhood cancer, shared by SCCS, show an increase of cases every year. In 2013, 43 new admissions were recorded. This increased to 59 in 2014. Between 2015 and 2018, there were 61, 73, 78, and 66 new admissions respectively.
Taking part in the Go Bald Campaign last year, Hee broke down at the thought of the many young lives lost to cancer.
According to SCCS figures, notably, the five-year overall survival rates are quite high for some of these cancers – Hodgkin’s lymphoma (97 per cent), retinoblastoma (99 per cent), germ cell tumours (96 per cent), and Wilms Tumour (90 per cent), followed by Non-Hodgkin’s lymphoma (85 per cent), leukaemia (80 per cent), and neuroblastoma (79 per cent).
Meanwhile, the five-year overall survival rates are 74 per cent for liver tumours, 71 per cent for osteosarcoma, 72 per cent for Ewing sarcoma, and 64 per cent for rhabdomyosarcoma.
Paediatric brain tumours can be categorised into three types – astrocytoma whose survival rate has been recorded at 85 per cent, ependymoma at 81 per cent, and medulloblastoma at 70 per cent.
One of the most common paediatric cancers in Sarawak is leukaemia, also known as blood cancer, where abnormal white blood cells, responsible for fighting infections, are produced.
In the case of leukaemia, the abnormal white cells do not function the same way as normal white blood cells but will, instead, continue to grow and divide, eventually crowding out the normal blood cells.
The condition will make it difficult for the body to fight infections, control bleeding and transport oxygen.
A participant of the Satellite Shave last year.
Leukaemia symptoms that typically occur include swollen lymph nodes, easy bleeding, bruising (bluish or purplish patches or red spots on skin), and fever, among others.
Where leukaemia cells affect the brain, patients may experience headaches, seizures, and vomiting.
Paediatric brain cancer occurs with tumour in the brain and the possible symptoms are sickness, drowsiness and vision problem such as blurred vision and floating vision.
However, the position of the tumour in the brain may see varied symptoms such as difficulty in walking, weakness or numbness in part of the face or on one side of the body, hormone imbalance, and retarded growth.
For lymphoma (in childhood cancer), the early symptom is painless swelling in the upper body lymph nodes at the neck, collarbone region and armpit or groin. It’s vitally important to recognise the symptoms, which include temperature swings, fever, unexplained weight loss, loss of appetite, persistent coughing, breathlessness, enlarged tonsils, and headache.
Retinoblastoma is a common type of eye cancer in children that starts in the retina. The symptoms include white pupil, squint, inflamed or swollen eye and enlarged pupil that affects vision.
In paediatric bone cancer, tumours are commonly found in the long bone or thigh bone before spreading to other parts of the body. The symptoms include pain, joint swelling and stiffness while the less common symptoms are sickness, weight loss, fever, and anaemia (low level of red blood cells).
Hee (fourth right) with Piasau assemblyman Datuk Sebastian Ting (fourth left) at the Go Bald Campaign in Miri last year.
Why the awareness?
Last year, SCCS launched the ‘Ali beat Cancer’ campaign in Kuching – a one-of-its-kind balloon maze – in September which is Childhood Month. It attracted 5,000 participants.
The campaign featured the journey of a child diagnosed with cancer. Not only did it attract a lot of public attention but also unexpectedly received donations amounting to RM28,000 to support SCCS’ fight against childhood cancer.
This and other educational events introduced by SCCS, including Gold Ribbon Week, are aimed at raising public awareness and understanding of paediatric cancer.
A gathering of children on Golden Child Family Day.
Go Bald campaign
When first launched in 2009, this SCCS signature fundraiser was the largest as well as the only head-shaving campaign to bring childhood cancer into public focus.
Why shave the head? The rationale is that each shaven head represents an understanding of the ordeals of cancer patients who have to endure baldness, resulting from treatment.
Shaving the head is a powerful way to encourage patients and give them the confidence to accept it’s okay to be bald. At the same time, it helps to raise much- needed funds for SCCS to run its programmes Sarawak-wide.
While annual fundraisers are near to achieving their target, the gradual increase in the number of shaven heads every year shows the community at large is becoming more aware of childhood cancer and accepting of its treatment and care.
The funds raised from the Go Bald Campaign will be used for many important purposes, including providing accommodation, food and transportation for outstation patients (and their caregivers) while receiving treatment in Kuching and Miri, financial assistance to needy families with cancer-stricken children, emotional support for patients and their families, as well as other services such as medical care, educational and recreational activities.
Plans are underway to refurbish both Ward 2A at the Sarawak General Hospital and Hospital Sibu. Also in the pipeline is the formation of an independent survivors’ group to help raise awareness of the disease and give new patients hope.
“We’re working towards providing care and support for childhood cancer patients in Sarawak and their families with the support of volunteers and public funding,” Hee revealed.
Apart from the main event, Satellite Shave, a mini Go Bald event, organised by schools, corporate companies, NGOs and other community organisations, are also helping to bring in more funds.
This year, the first leg of Go Bald Campaign will take place in Miri today (May 5) at Permaisuri Imperial City Mall from 11am to 3pm; Bintulu on May 12 at The Spring (12 noon to 3pm); and Sibu on May 19 at Delta Mall (11am to 4pm) before wrapping up in Kuching on May 26 at Vivacity Megamall (11am to 4pm).
“We’re doing things backwards to give a bit of fresh air to the participants and our volunteers,” Hee said.
Targeting to raise another RM1 million with a total of 1,200 head shaves for the whole Sarawak, SCCS is keeping its hopes high despite the slow economy. Last year, the campaign raised over RM1 million with more than 1,000 heads shaved and contributions pouring in from all over Sarawak.
For more information on Go Bald Campaign, contact 082-686 276 or email [email protected] or go to http://sccs.org.my/events/go-bald/ or the GoBald Facebook page.