kevin sinclair's hong kong

PUBLISHED : Wednesday, 07 March, 2007, 12:00am
UPDATED : Wednesday, 07 March, 2007, 12:00am

Leung Chik-yee went home from hospital last month with his mother and father. Three weeks later, the eight-year-old boy with the brain tumour was dead. Everything had gone as planned. The last few weeks of his short and painful life had been spent at home, cared for by loving parents, grandparents and his two sisters.

As predicted by doctors and staff of the Children's Cancer Foundation, Chik-yee lapsed into a final coma. Mr Leung (not his real name) called a special number at Fire Services headquarters and an ambulance arrived quietly.

Mr Leung tried to hold back his tears as he gave the ambulance man a special DNR (do not resuscitate) form; this is official notification telling care workers not to try to keep the frail body alive but merely to take the child to hospital.

Mr and Mrs Leung accompanied their son. They sat by his bedside as he died.

It's a sad story. But it's also one of victory for the gravely ill and their families, and a triumph for the Children's Cancer Foundation.

Getting terminally ill children out of hospital to spend their last days in a warm and loving home environment was not an easy task, says Molin Lin Kwok-yin, the nurse in charge of the foundation's Palliative and Home Care Service.

'Being at home is the best place for them,' Ms Lin contends. 'It's what they want. It's what the parents need.'

It took many years of persuasion and organisation to arrange the system, explains Alan Wong Yuen-yiu, chairman of the foundation's patient service committee.

'Parents go through agony as a child dies,' he says. 'They want to have their son or daughter at home with them for the final weeks. They want to give them love. But we try to spare them the intense trauma of the final hours.'

Some children with terminal cancer may spend more than a year at home until the deadly disease finally pulls them to the verge of death. But it's more commonly a few weeks.

The picture is not all gloom; Miami Wu Yi-yun, founder chairwoman of the foundation, says up to 70 per cent of patients survive leukaemia and 65 per cent survive brain tumours - two of the more common forms of cancer in young patients. Others are diseases of the soft tissue, muscles, lymph glands, nerve cells and bones.

Ms Wu knows very well this successful side of the grim story of children suffering with cancer. Her son, Donovan, then aged three, was diagnosed with leukaemia 19 years ago and given a 3 per cent chance of survival.

Love, determination and expert care by government doctors saved his life. Donovan later studied sports administration at Leeds University in Britain and now works as a physical education instructor at Outward Bound in Sai Kung: yesterday he was in charge of sea rescue exercises.

'It wasn't easy 18 years ago to care for a child you had been told was going to die of cancer,' notes Ms Wu, with massive understatement.

When Donovan pulled through, it inspired this dynamic woman to help form the foundation to help less fortunate parents.

Their work is impressive. At any one time, the foundation cares for 900 or more children and their families.

One vital part of their work is counselling and aiding parents; the strain of looking after a dying cancer patient is significant.

'We have a respite care programme based at our office in Pat King,' says Mr Wong. 'We care for the patients so parents can snatch a few hours of relaxation, go out for a meal, for instance, or to a movie or maybe just for a walk.'

Their ambitions are broad. In addition to expanding their respite programme and the specialist hospice care that allows dying children to spend their last days with loved ones, the foundation plans to broaden rehabilitation efforts to help survivors cope with their lives.

Further out on the horizon is the dream of the Hong Kong Children's Hospital, which Ms Wu sees as a logical solution to many problems facing not only young cancer patients but children suffering from a wide variety of needs.

The Children's Cancer Foundation has made impressive strides since it was formed in 1991. With full support and enthusiastic backing of nurses and doctors at the Children's Cancer Ward of the Prince of Wales Hospital, Ms Wu formed a committee that helped the organisation grow. In the first year, they raised HK$19.3 million in donations.

Can anyone think of a better cause?