'You have to be strong for them'

12:16pm Thursday 20th November 2008

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Last week 13-year-old Hannah Jones chose the right to die after refusing a heart transplant. Ruth Campbell talks to the mother of Josie Grove, who died last year after refusing any more treatment for leukaemia, and hears why she supports the teenager’s decision.

JACQUI Grove remembers the moment her 16-year-old daughter decided to stop fighting cancer. Leukaemia sufferer Josie was about to embark on yet another treatment which could potentially prolong, rather than save, her life.

As the talented young artist and swimmer waited to see if the first, mild dose would have any effect, she blurted out: “I hope it hasn’t worked Mum, I don’t want to go through it all again.” Jacqui put her arms around her. “I hugged her. I totally understood. It was a brave decision to make. I told her I didn’t blame her for making it.”

Josie, who had been diagnosed with acute myeloid leukaemia at 14 and had endured two failed bone marrow transplants and countless rounds of painful, debilitating treatment, died at her home in Northumberland in February last year.

The teenager knew her cancer was incurable.

There was hope doctors could give her more time. But she would spend much of it in hospital and the treatment would be agonising. She decided she wanted to spend the little time she had enjoying life in the company of her family.

It was a brave decision, and a painful one.

Jacqui respected her daughter’s right to make up her own mind, believing that to force more treatment on her would have been cruel.

“It is heartbreaking to lose your child, you can’t imagine anything worse. I think about her all the time. Two or three times a week, I still wake up and think Josie is alive. My mind still can’t accept it.”

But she says she has never, for one moment, regretted supporting Josie’s decision.

In recent weeks she has been reliving the anguish of those difficult days, since 13-year-old Hannah Jones, from Hereford, chose the same option. Hannah has the same type of leukaemia as Josie had. A heart transplant could save her life but her chances of surviving it are slim. Like Josie, she simply wants pain-free time with her family. “I have had enough,” she says.

Jacqui identifies with Hannah and her parents.

She remembers the media attention and the letters they received from well-meaning people urging them to change their minds.

“People wrote: ‘If you pray hard enough, you will get your wish’. Did they think we were not praying? People urged us to try alternative treatments. I know they were trying to help, but they had no idea. You have tried everything.”

Since Hannah’s story has been in the public eye, a number of surviving cancer patients – including 18-year-old Melissa Wright from Bishop Auckland – have come forward to talk about how transplants have worked for them.

Melissa, whose heart failed as she recovered from non- Hodgkin’s lymphoma, says her heart transplant “was the best decision ever”.

Jacqui says: “I am obviously really pleased for her, but every case is different. Josie was very poorly and had to have several periods in intensive care. We had seen her in pain so often. She couldn’t face it all again.”

Her dying daughter summed it up best as she resolved to take control of her life. “I wish people would stop trying to save me. I want to live before I die.”

“She wanted to be normal for a little while,”

says Jacqui. “ She had already missed out on so much.”

Jacqui, 46, and husband Cliff, 48, who run a jewellery company and have a shop in Hexham, where they lived while Josie was receiving her treatment at the Royal Victoria Infirmary, have three other children, Freddie, 15, Libby, 13 and Charlie, two.

The couple used the analogy of the dragonfly to help Josie and the others understand death.

They explained how the larvae float to the top of the water to break free as dragonflies. “But they cannot go back down to tell the others how wonderful it is,” says Jacqui.

Although they have since moved to Thailand, Jacqui and Cliff still run Josie’s Dragonfly charity – which their daughter set up to buy arts and crafts for terminally-ill children, as well as giving one-off grants of £500 in their final months – from their Hexham shop. Shortly before she died, Josie also designed a dragonfly pendant to raise money for other children.

Back in the North-East this week, Jacqui says she wants to offer Hannah and her family her support. “For me, the decision is a simple one. It is very hard when people say she has made the wrong decision, as if she doesn’t want to live.”

Through the charity, Jacqui regularly comes across children in this situation. “These children carry a lot of guilt – they are leaving you and they know you are going to be heartbroken.”

They did talk to Josie about how hard it was going to be for them. “She understood. But she was always very strong. You don’t have a choice, you have to be strong for them.”

Jacqui’s voice is full of emotion as she talks about the wonderful times they enjoyed together in Josie’s final months. “Although it was extremely hard, it was a nice family time. Josie absolutely knew how much we loved her. That is a comfort.

“It was wonderful to see Josie as happy as she was in her last months. She made so much of a difference and that is her legacy. Josie was full of potential and through her charity we are using that potential.”

Josie died on February 26, 2007. Jacqui says: “She left on her terms, she was at peace, she was ready. She had no fear.”

She says she still feels Josie’s presence. “ I have Josie’s charity to work on and I feel she is with me. I don’t feel bitter, I am grateful she came into our lives.”

■ For details of how to donate, see josiesdragonfly.org