The Westley family tell: Sarah's last wish

Lying in her hospital bed, just days from death, 13-year-old Sarah Westley opened her eyes and whispered her final wish.
‘I want you to promise me something, Dad,’ she insisted, shifting uncomfortably as her stomach bulged with the huge cancerous tumours.

After a two-year battle with authorities, during which she was made a ward of the state and forced to have chemotherapy, the teenager was determined no-one should suffer like her.
‘What they did to me wasn’t fair,’ she said quietly. ‘I want you to make sure they can never do this to any other kid – ever again.’

Terrible news
Mark and Dianne Westley still can’t come to terms with the horrors endured by their beautiful, adventurous daughter during the last months of her life.
‘It was torture because Sarah was in agony but we were helpless to protect her,’ Dianne reveals. ‘Her life was ebbing away but she was forced to have treatments and she was deprived of having her family around her.’

What happened to Sarah will send a chill down the spine of any parent. When the Westleys were told their daughter had a rare and advanced form of ovarian cancer, they asked to see research that would prove that chemotherapy could cure her. If there was no evidence of success, they argued, they wanted to take Sarah home to the farm, near Gloucester, NSW and give her the best life possible in the time she had left.

But the doctors objected. They called in the NSW Department of Community Services and before the Westleys even knew what was happening the matter was before the Supreme Court and Sarah was made a ward of the state.

Over the next year, Sarah was incarcerated in two NSW hospitals where she had chemotherapy and her spleen removed, treatments that were ultimately unsuccessful. Worse, instead of being able to draw support from her large and loving family, she was permitted to see them for only two hours a day.

Speaking at the kitchen table where Sarah used to swing on the beam overhead, Dianne is close to tears: ‘I’ll never forget that image of her sitting on the windowsill in the hospital watching us drive away after those two-hour visits. It was torture, because I wanted to grab my child, run away and protect her. The pain was there all the time because we couldn’t change it.’

Difficult decisions
When the couple first took Sarah to hospital in November 2002, doctors claimed their 11-year-old was pregnant. Mark refused to believe it and became more uncomfortable when they started questioning Sarah when he wasn’t in the room.
‘She hadn’t even started puberty so I wasn’t interested until they’d done a scan,’ he says.

Dianne adds: ‘I’d had six children in 10 years so I knew she wasn’t pregnant because the bulge in her stomach was a different shape to a pregnancy. We live in the country and with five daughters, we are very protective.’

It was a Sunday and scans weren’t available at the small hospital until the following day but that didn’t stop the doctor calling a social worker, a child protection worker and the family’s GP. Over the next few hours, speculation swirled around this quiet, traditional family, which would have far-reaching consequences.

Were they part of a religious sect? Was the mother’s postnatal depression following the birth of her sixth and last child more like a psychosis? How had an 11-year-old become pregnant?
Mark shakes his head: ‘They were trying to create a picture that bore no relation to the truth.’

The next day a scan showed Sarah had a football-sized tumour, and after doctors took four hours to remove it in surgery, they discovered it was malignant. The Westleys were then faced with the heart-breaking dilemma of deciding whether to pursue further treatment. They were determined to save Sarah from enduring further medical intervention, like chemotherapy, if it was not going to cure her.

The Westleys are by nature cautious people. Mark says:
‘We requested information constantly. We wanted to know in our hearts and minds this treatment was the best thing.’

In the end, social workers descended and that choice was taken from them. Dianne was by Sarah’s side as the chemicals were pumped into her body, leaving her violently sick. Even now, Dianne can’t talk about that time: ‘I’m sorry, it’s just too painful,’ she whispers quietly.

Behind the scenes Mark was fighting. Several times he went back to court, even representing himself at one stage.
‘I felt as if I’d failed Sarah,’ he says. ‘We’d had faith in the system and I kept thinking: “How has this happened?”’
Dianne adds: ‘It was like a nightmare that never ended.’

They’ll never understand why their daughter was deprived of what she needed most – the comfort and care of her family. Visits were limited to two hours a day for no explicable reason and the sound of Sarah pleading to go home still haunts her parents.

‘They [the doctors and authorities] had taken and busted and destroyed everything they could externally and Sarah began to find an inner anchor,’ Mark says. ‘It was as if they could do what they liked to her body, but they couldn’t touch her heart.’

Tragic final days
It was only near the end, when further treatment was clearly pointless, that Sarah was allowed home. By then she was too sick to play with her beloved animals. Looking back at a family video, it’s clear Sarah knew she was dying. She could muster a smile for her sisters or little brother but the sadness and defeat can be seen in her eyes.

As death approached, the Westleys knew their daughter needed hospital care but neither they nor Sarah could bear to return to any of the various NSW hospitals that had treated her. They flew her and the rest of the family to Melbourne where, for the first time, they were treated with warmth and respect.

When Sarah died just before midnight on October 25, 2004, all her family were around her. She was flown back to NSW and buried on her favourite hill overlooking the family farm.

For a long time the Westleys were too emotionally pummelled and grief-stricken to think about Sarah’s wish. But as they heard of more cases of DOCS intervening in the medical care of children, they sought the help of writer and health professional Eve Hillary, who Sarah had met when she attended Eve’s clinic for integrative health treatments.

Eve, who’d previously written a story about Sarah’s case that had garnered international attention, has written Sarah’s Last Wish, which she hopes will change the system that so badly failed Sarah.

Like the Westleys, Eve and other health professionals uncovered many mistakes made through ignorance or arrogance.
‘I have no doubt that if enough professionals granted Sarah her wish, Australia would develop the best medical system in the world.’

Mark and Dianne have moved on from feeling as if they failed Sarah to wanting to bring about change. Dianne says: ‘The book is out there and Sarah’s story is changing hearts. The system can change, we’re sure it can.’

By: Angela Mollard
Photos: Nigel Wright

• To order a copy of Sarah’s Last Wish, visit sarahs-last-wish.com