An inspiration to us all

A toddler's mischievous scribbles etched into the furniture are not cause for dismay in the Gallienne household.

Instead the ink stains are a comforting reminder of their youngest daughter.

It is eight months since Olivia lost her battle with leukaemia, but the family feel the two-year-old is still very much with them.

"She's still part of the family," says Katie. "I still put her name in our Christmas cards and I put an angel's face in the letter O'.

"Just because she's gone doesn't mean she's not still one of us. We feel her here all the time. She flickers the lights and everywhere we go we see a white feather.

"I know she's still here but I can't see her or touch her and that's what hurts the most."

Olivia was diagnosed with acute lymphoblastic leukaemia at just five weeks old - the youngest child to be treated for the disease at Southampton General hospital.

The odds of contracting leukaemia so soon after birth are one in a million.

When doctors discovered the disease - after Katie and her husband Andrew spotted bruises on Olivia's legs - it was already very advanced and the Galliennes were told it could have killed their daughter within a week if it had gone undetected.

But Olivia had a habit of proving the medics wrong.

Despite the bleak prognosis (doctors said she was unlikely to reach her first birthday) Olivia did go into remission and when the cancer returned ten months later she beat the odds again, undergoing a successful bone marrow transplant which carried just a five per cent chance of survival.

Then, during the 616 days Olivia spent in hospital, including countless spells in intensive care, her mum and dad were told to say their goodbyes time and time again.

But somehow little Olivia - the recipient of a Cancer Research Little Star Award for bravery - always pulled through.

"Hospital became normal for her," says Katie. "She was happier there than at home. It was easier on us that way. I've heard of older children screaming at their parents: I hate you. Get away from me' because they're fed up of all the treatment.

I don't think we could have coped with that. Older children understand too much.

"Olivia grew up in hospital for the first three months of her life. If we brought her home she wouldn't sleep or eat, but in hospital with all the lights and the machinery beeping she would be happiest.

"That's what amazed all the staff.

Even at her worst she was still smiling and waving."

It is that spirit that captured the hearts of thousands at last year's Race for Life when she toddled across the finish line flanked by Katie and seven year-old sister Jazmine.

By then, the toddler who had just learnt to walk again after months of hospital treatment, had become a symbol of the Southampton event.

"I didn't think we would ever get to that point," remembers Katie. "It's something we thought we'd never see."

Sadly just one month after charming the crowds at Race for Life Olivia suffered a mini-stroke and finally lost her battle for survival.

Cruelly, it happened when she seemed to be making progress - free of the oxygen supply she had relied on for so long and home from hospital for a record 16 weeks.

"It makes me angry. If it was the leukaemia coming back I could accept it more," says Katie.

Seeing their daughter back in intensive care didn't phase the Galliennes.

"It was nothing new for us. She'd been on a ventilator before and she was always alright so I wasn't worried. She'd done it before, I thought she could do it again.

"Then we found she'd had a bleed to the brain and the doctors took us aside and said we should think about letting her go. I said: I'm not having it. You've told us this before and what if we'd listened then?' "But her blood pressure kept rocketing and doctors said that if it happened again her heart would stop anyway.

"They said we could either let that happen or make the decision to turn off the ventilator ourselves. In the end we decided she was never going to wake up and so we would let her go peacefully by turning off the ventilator.

"Even then we could choose when to do it so we had time to call all the family and they could travel to the ward.

"We took photos, made hand and foot prints and cut pieces of her hair for people to keep."

Hospital staff who had been with Olivia from the beginning also came to be with her.

"They knew her better than some family members. They were her family and they became my friends. When I was in the hospital overnight they became my social life. They made our life 100 per cent better than it would have been and it's thanks to them that we got two years and ten months with Olivia."

After her death, the family chose to take Olivia to rest in her room at Southampton's Piam Brown Ward where she had been diagnosed and where the family had spent so much time together.

Unable to face leaving her alone, the Galliennes stayed in Southampton overnight before returning to their Alresford home where they are now adjusting slowly to life without Olivia.

"All three of us are different in the way we have dealt with it. Other people I know from the ward who have gone through it have found they can't still go out and visit the places they used to go as a family or they feel guilty for enjoying themselves. They shut themselves away and cry.

"Maybe people will think I'm strange, but we still go out and do normal things together.

"We don't cry a lot but we think about her a lot.

"I think accepting that she wasn't always going to be here has helped us cope. I never looked further than a week ahead and I always knew she would never go to school. We took so many photos and videos of her and we made the most of the time we had with her."

But there are darker moments.

"We always say she's in heaven, but this is hell for us now because she's not with us," says Katie.

"We tried for three years to get pregnant with Olivia and then she was taken away from us. Even now I still think why did it pick us? What have we done to anybody? There is no answer to that question and it will always be with us."

For now the family are taking comfort in fundraising - they have already raised £4,000 for the Piam Brown ward and Andrew is planning a charity parachute jump later this year.

They also have Jazmine to think about.

"I think we're lucky that we have another child. Jazmine needs things to be normal. She has ups and downs but she is coping well and this whole experience has brought us even closer together as a family."

Now Jazmine's most treasured possessions are her memory box, filled with photos and momentos of her sister, and a pillow printed with Olivia's photograph.

"I'll always remember Olivia walking around the furniture and pushing her little trolley,"

smiles Katie.

"She was a cheeky monkey and always had a smile."

Those memories will be even more vivid at this year's Race for Life on July 13.

"It will be the first year without Olivia so it will be an emotional one for us,"

says Katie. "We'll have to get the tissues out definitely.

"Before Olivia, we'd never thought about doing Race for Life because cancer was something that didn't affect us. Now it's become a personal event for us.

"Without money raised from events like Race for Life we wouldn't have got where we were with Olivia. We wouldn't have had the time that we did. And with more fundraising, other people will be able to get even further."