'You never think it's going to be you': Parents’ fight to save daughter with cancer

The family of Ava Bolton hope they can give her a chance at life after raising money for pioneering new treatment.

Ava Bolton is rarely seen without her toy bunny in her hand.

Like many other children her age, the four year old loves Frozen, singing and dancing, and playing in the garden.

But Ava’s life is far from normal.

‘It really does devastate you

At the end of 2022, on her third birthday, Ava fell unwell. Initially, her parents put her symptoms down to a lingering virus. 

Her mum Natalie told Scotland Tonight: “All the way through December and into January, she was not getting any better. The lethargy developed more and she became quite pale. She had a limp in her leg. Then she started to get bruises around her eyes.”

Natalie and Scott Bolton

Natalie and her husband Scott took Ava straight to the GP, who referred them to Crosshouse Hospital in Kilmarnock.

Following three nights of tests and scans, specialists told Natalie that they suspected Ava had neuroblastoma, a rare and aggressive form of cancer.

Natalie said: “I had to phone and tell Scott, and it was one of the most difficult phone conversations I have ever had. To tell my husband that our daughter had cancer was awful.”

“You feel empathy for others, but you never, ever think it’s going to be you. And when you’re faced with that situation, it’s completely unexpected. It really does devastate you at the time.”

Cancerous cells were found in 53 areas of Ava’s body – and that her neuroblastoma had reached stage four.

Contributed

Neuroblastoma mostly affects children under the age of five.

It develops in early nerve cells, which would ordinarily grow into working nerve cells, but with neuroblastoma, they become cancerous, and form a tumour.

Those cancer cells can then spread elsewhere in the body.

It affects around 100 children up to the age of 14 every year in the UK.

Ava was immediately put on a treatment plan at the Royal Hospital for Children in Glasgow.

Over the past year, she has undergone intensive chemotherapy, a stem cell transplant, 13 rounds of radiotherapy, and immunotherapy.

Juggling Ava’s treatment, while still caring for her six year old brother Lucas, has been an enormous challenge for the family.

Dad Scott said: “We’ve both been off work for about a year. I’m self-employed. So that was a big burden.

“We’re always in the hospital with Ava and then someone is home with Lucas.”

Ava has been responding well to treatment, but even if her cancer is brought under control, she will still face a long road to recovery. 

Ava's family have raised over £300,000 to sign her up for a pioneering clinical trial in New York

Natalie said: “Survival, I believe, is 50% for the stage four that Ava has. But there is a 60% chance that the cancer will return later and that she’ll relapse.

“And it’s when they relapse that it becomes exceedingly difficult to fight, and the prognosis is then extremely poor, and the survival rate drops to less than 5%.”

To give Ava the best possible chance of avoiding any future relapse, her family have been fundraising to secure her a place on a pioneering clinical trial in New York. 

Specialists there have developed a vaccination which helps the immune system to fight any return in neuroblastoma.

But it comes at a huge cost.

Ava during treatment

Natalie said: “We have to spend quite a long time out there. And between four and six weeks initially to start with, but we will have eight subsequent trips out after that.”

Scott added: “It can range from £250,000 up to £700,000. We really don’t know. So our goal is to make sure we have enough money to get her well.”

The Boltons launched an online fundraiser last year, which has already collected more than £300,000.

Scott said they have been totally overwhelmed by the support.

“The amount of people from the local villages, strangers just reaching out to us wanting to do various events, and just wanting to help.”

Despite the uncertainty about what lies ahead of them, Ava’s family are taking comfort from other families’ stories. 

Scott said: “There are families who are further down the line who are currently in New York going through the treatment plan. 

“One family has been through it all and their daughter is now well past the five year survival and living a normal life.

“So there are the good stories, which are the ones we’re trying to focus on and be positive about, and hopefully Ava can be one of those stories.”

View Ava’s GoFundMe page here.

Watch the full report on Scotland Tonight: Ava’s Story, at 8:30pm on STV and the STV Player.

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