SCCS: Fighting the good fight

MIRI: The Sarawak Childrens Cancer Society (SCCS) has gained recognition for the role it plays in the community as a support group for families whose children suffer from paediatric cancer.

What started as a small support group set up by parents whose own children were afflicted by the disease to provide emotional, moral and financial support to similar families soon grew into something much more.

SCCS has come a long way since its formation in 1999. We have grown into a well-established non-profit organisation with many programmes benefitting families and patients, SCCS secretary and head of liaison in Miri, Jocelyn Hee, told The Borneo Post in an interview recently.

We now provide a halfway house for those seeking treatment in Kuching, financial subsidies, counselling and sharing sessions for parents with children newly diagnosed with cancer and even a Golden Child Camp and Youth Camp for existing patients and survivors.

For those who have to travel all the way to Kuching for treatment not available in Miri, especially when they are first suspected of having cancer, SCCS will provide temporary accommodation, transportation and short term monetary assistance.

In 2014, SCCS provided financial aid and travelling subsidies of over RM90,000 to 60 families. Before, those coming back for treatment in Miri Hospital will need special arrangements. Now that we have established our own transit home here, we will try to provide an environment where young patients can be comfortable while undergoing treatment, Hee explained.

The Miri transit home also functions as a base where parents can get together to share experiences and support one another, as well as a hub where SCCS can conduct activities for the children, such as craft work, birthday and festival celebrations.

To these children, each birthday or festival celebrated is a great achievement and an opportunity to create more good memories together.

Besides catering to the families of children with cancer, the new centre can also be used to conduct training sessions for volunteers to help support parents of children with cancer, especially those under palliative care.

For many affected families, the ordeal of dealing with all the uncertainty, the painful treatment process, the multiple hospital visits and for an unfortunate few, the bereavement process, can be too much to bear.

For parents of newly diagnosed patients, I will seek assistance from parents who have gone through this journey to share their story. For those whose child has survived the battle against cancer, their story somehow encourages these new parents to have faith to face this challenge with their child, as well as learn to understand all the treatment their child will undergo with their doctor, Hee explained.

According to Hee, despite wide dissemination of information relating to palliative care, there are in fact still many who have mistaken palliative for something else equating palliative, with no further treatment.

In worst case scenarios, the child should be ensured of good quality of life with whatever time they have left. Pain and other symptoms can and must be controlled; emotional and spiritual support must also be given to both child and family.

Hee reiterated that SCCS would step in to support parents after doctors had discussed their diagnosis with the family.

The pain is worse than the diagnosis; hence volunteers need to undergo special courses to be able to handle such situations. With palliative care, we will do our best to fulfil the young patients last wish, and create memories for the family and child.

Last year, there were two patients aged seven and 11 years old who were on palliative care. I discussed their wishes with them and they said they wanted to go to Legoland in Johor. We made all the arrangements, ensuring that everything from tickets to medication and medical equipment was available along the way.

Because they had a lovely and meaningful time with their family before passing on, parents were very grateful and accepted their death well, Hee said.

Home visits by SCCS do not stop after the patient has passed away. As a friend, we offer bereavement support for parents so that they can mourn properly and learn to slowly let go, as it is important for them to move on with their lives, Hee said.

Parents whom, unfortunately, have lost their child in the battle play an important role as a volunteer. They share their stories and their pain and show other parents how they coped during the last moments. It can be very painful. Not every parent can do this.

To be honest, during treatment, they often address me as Ah Mie, or mother, in Mandarin. There is this special bond that drew us closer to each other emotionally. There are times when the patient has passed away, and I was there to support them and make arrangements.

There are also times when Im overcome with emotion. Volunteers must be constantly alert for any alarm bells and get counselling before a breaking point is reached, Hee cautioned.

In 2014, staff of SCCS had conducted 1,048 counselling sessions and made 51 home visits to 25 patients all over the state of Sarawak.

Hee continues to educate parents on the role of SCCS and what parents can do to contribute.

There are parents who are very grateful to SCCS and want to contribute in any way they can. However, there are those who dont. SCCS is a non-profit organisation and welcomes all who wants to volunteer without giving any undue pressure.