Legacy of brave cancer girl Olivia lives on

WHEN 11-year-old Olivia Arnold died from cancer in 2012, she was at home and holding her parents’ hands. The heart-wrenching story is being related to me by her mother, Lisa Ali, 35, who had to watch as her daughter gently slipped away.

Losing a child is every parent’s constant worry but to experience it and - in Lisa and her partner Daniel Arnold’s case - to see it coming, is almost incomprehensible. But that is what they had to do.

Olivia was an outstanding child who came top of her class at school and was outgoing, starting a karate class when she was nine.

“It was after that she began to complain of a pain in her Knee. To begin with, both her parents and doctors thought the sensation might be either related to karate or simply growing pains but when it didn’t go away, a hospital scan revealed a tumour which turned out to be cancerous.

Olivia underwent 11 months of chemotherapy before the tumour was cut out and, for all her parents knew - and hoped - that was it.

“She went through everything without moaning, she was always enthusiastic, she dealt with it in a very adult manner. When it was first diagnosed, she said ‘Let’s get rid of this gremlin and get back to normal.’

“She missed a whole year of school and when she took her SATs she came top of her class.”

After the initial bout of treatment, the family’s life went pretty much back to normal and they settled back into the routine of things.

It was a routine scan in January 2012 which revealed some suspicious nodules on her lungs and tests revealed the cancer, known as osteosarcoma, had returned.

Lisa took up the story: “She had to have them removed, she went in for an operation 11 days after her 11th birthday. After the operation, doctors told us they were hopeful they had managed to get everything out.”

And so the family dared to hope… but just four weeks later, during another scheduled scan, medics found signs of the cancer in other parts of her body, including her lymph nodes. It was at this point, the family had to make an agonising decision.

“They offered us more chemo,” said Lisa, barely holding back the tears. “They told us it would not cure it but it might give us a few more weeks with Olivia.

“It was a choice as a family we had to make. In the end and having seen what she went through before and how sick she got, we chose to go with quality, not quantity.”

But there was an even greater decision - whether to tell their daughter or not.

“She was so well at that point, she was happy, she did not even know about the cancer returning and we made the decision not to tell her. There didn’t seem any sense in doing so. We are the adults, we’re the ones who have to worry about that, she didn’t.”

So, Olivia went back to school - St Nicholas, Oakwood - and was happy and the family rallied around in a bid to make the time they had left with the 11-year-old the best it could be - they went on several trips and holidays and during one of their adventure, as they waited in an airport lounge, Olivia befriended actress and Loose Women panellist Denise Welch, who would later become patron of the charity.

Lisa continued: “It was during one of the holidays, in June 2012, we noticed a change in her. She was less energetic and didn’t want to do anything. Between then and August she deteriorated and she never once complained.

“On August 6 we travelled to London to see Shrek the musical, which was an operation in itself but we did it and we met up with Denise Welch.

“She really enjoyed that night. We came back from London and it was two weeks to the day that she passed away. We decided to keep her at home because she said previously she never wanted to go back to hospital.

“We were here for her last breath. She was holding both our hands. We stayed up with her all night and at 3.20 in the morning she woke up and suddenly said ‘I love you mum’ and then just after 5.51am, she died.”

Olivia’s death was difficult for the family for a number of reasons - not least because they had lost their daughter but also how to then explain that to their son, Olivia’s brother, Reece, who is now eight and just as outgoing as his late sister, having recently taken up motorcross.

“He knew she was pourly,” recalls Lisa. “We had a hospital bed here. When she died we had to tell him she had gone to heaven. He was heartbroken And there’s still not a day goes by we don’t talk about her.”

But the story is far from over, because Lisa and Daniel set up a trust in Olivia’s name - the Olivia Arnold Trust - to raise money to help families who find themselves in financial turmoil following a cancer diagnosis.

So far, the trust has raised over £52,000 with a series of bric-a-brac sales and cake stalls and in October they hope to boost that even more with their annual charity ball, which will take place at The Irish Centre on York Road (A64).

Lisa explained the reason behind the trust: “It’s for the hidden costs of treatment, things you don’t think about, such as the cost of mobile phones, parking or taxis. All of this suddenly hits you and you have to deal with it and it’s not something most people think about.

“Our trust is designed to be there for families who are going through something like this and it’s to help them out financially.

“When we went through it, we found there was no funding available for families and siblings but when someone is diagnosed with cancer, it’s something you all go through.”

Having been through one of the worst ordeals imaginable, Lisa admits she is a changed woman.

“You become a different person,” she explains. Life is different, it has to be. It turns your whole life upside down.

It has been two years since Olivia died and recently, Lisa and Daniel have been celebrating the arrival of their son, Roman, who is now six-weeks old.

Lisa said: “It wasn’t something we planned but it’s happened and I’m calling him my rainbow baby. He was actually induced because his due date was August 20, which would have been the second anniversary of Olivia’s death.

“Staff at the hospital were aware of our situation and it’s something they brought to us to discuss and we decided we didn’t want his birth to be tainted with something so emotional - that he deserved to have his own birthday and so he came 12 days earlier than he should.”

Indeed, so much of a surprise was the pregnancy that when she told her mother Maneza, it came as a complete shock.

“I put the pregnancy test in a Christmas card to her,” recalls Lisa.

Her mother, who turned up at Lisa’s house toward the end of our interview, noted: “I didn’t even know what one was, I was gobsmacked.”

There’s no doubt the arrival of little Roman has given the family a new focus. Still, little Roman, who as he grows up will only ever know his late big sister through the stories told to him by those who did, shares a link with her in that they both have the middle name Kennedy.

Now the family’s attention is focussed on generating as much money as they can to help others in a similar situation.

“We’d like as many people there as possible,” said Lisa enthusiastically. “Last year it really gave our trust fund a boost and some of that money has already been used to help people - we’ve recently linked up with Candlelighters so we can better identify families who will benefit. It’s not just for parents who lose their children, it’s for all families who go through this. We want to do something which will help people because things like this affect every part of your life and it helps to know that you can, in a small way, make someone else’s life just that little bit easier.”

OSTEOSARCOMA - Sarcomas are rare types of cancer that develop in the supporting tissues of the body. There are two main types, bone sarcomas and soft tissue sarcomas.

Bone sarcomas, such as osteosarcoma, can develop in any of the bones of the body, but may also develop in the soft tissue near bones.

Soft tissue sarcomas can develop in muscle, fat, blood vessels, or any of the other tissues that support, surround and protect the organs of the body.

The annual Olivia Arnold Trust ball will take place on October 24 at the Leeds Irish Centre on York Road, from 7pm till late.

Tickets cost £35 and include three course dinner, DJ, live band and raffle.

This year’s theme/dress code is songs with ‘black and white’.

Contact Lisa either on email: [email protected] or telephone: 07775 526 947.