Wrapping her arms around her ten-year-old daughter, Charlotte Fairall faced a heartbreaking task.
She had to explain that not only had the cancer Sophie had been diagnosed with less than a year ago returned – there was nothing more that could be done to treat it.
‘What mother wants to break that sort of news to her daughter who hadn’t even made it to her teens?’ says Charlotte.
‘All the hopes and dreams that we had for her… I held her tight as I told her what the doctors had said. She knew this was it, and she cried.’
But then, through her tears, Sophie said something that took her mother’s breath away. ‘She looked at me and said: “I need to make the most of every day I have left, Mum”,’ recalls Charlotte, 44.
‘I always knew she was brave, but until she said those words, I didn’t realise just how brave. From that day on she never cried again, she got on with making the most of every day. That’s what I’m most proud of Sophie for.’
Along with her vow to make the most of what little time she had, Sophie wanted to improve the experience of cancer treatment endured by other children.
After going through aggressive chemotherapy and radiotherapy treatment for rhabdomyosarcoma – a soft tissue cancer more common in children than adults – Sophie believed current treatments were outdated.
Sophie Fairall appears on ITV’s This Morning alongside her mother Charlotte in 2021
‘It seems incredible that a ten-year-old could see this,’ says Charlotte. ‘But because she’d suffered severe side-effects, more than anything she wanted future treatment to be made less harsh.’
Both chemotherapy and the radiation blasted at Sophie’s abdomen were ‘horrendous’ for her, leaving Sophie with constant bowel problems – ‘so much so she even nicknamed her bowel “The Grumpy Old Man”’.
And ultimately they failed to save her.
‘Treatment for lots of childhood cancers are archaic, and are still using drugs from 40 years ago,’ says Sara Wakeling, head of Alice’s Arc, a children’s cancer charity. ‘Often they are based on adults, sized down for children.’
Standard treatment for rhabdomyosarcoma, for example, is a combination of radiation and chemotherapy drugs that have more side-effects than more modern drugs – the drugs directed at Sophie’s abdomen would have meant she would never have been able to carry a child and damaged her spleen, she explains.
‘Modern immunotherapy drugs on the other hand wouldn’t have damaged her organs at all – the long-term impact is lessened.’
Sophie also felt strongly that simple changes – such as providing meals for parents on children’s cancer wards so they didn’t have to leave their child to get food – could make a massive difference.
Sophie’s family set up a charity in her memory, Sophie’s Legacy, and launched a campaign and website, urging their followers to write to their MPs for change.
Sophie (left), pictured with her family (dad David, sisters Emily, Alice and Rosie and mum Sara) was diagnosed with rhabdomyosarcoma – a soft tissue cancer more common in children than adults
That led to a debate in April 2022 in the House of Commons – the first debate ever on children’s cancer.
And because of Sophie and Charlotte’s campaigning, a government taskforce was set up in February this year, bringing together leading experts to look at how improvements can be made in children’s cancer treatment.
Cancer remains the biggest cause of death by illness of children under 14 in the UK, with five children dying from cancer every week.
Despite this, only 2 per cent of cancer research funding is for children’s cancer, according to a 2023 analysis by Great Ormond Street Hospital Charity.
There is currently no refresher training for qualified health professionals – and it isn’t offered in medical schools.
What’s more, 53 per cent of childhood cancers are diagnosed after an A&E trip. This is far higher than adult cancers, of which 22 per cent are only picked up in A&E. As was the case for Sophie.
It was one morning in July 2020 when Sophie, then eight, told her mother her stomach hurt.
‘I thought it was indigestion, she’d eaten a big dinner the night before,’ says Charlotte, 44, who lives with daughters Amelia, 12, and Lucy, 17, in Stubbington, Hampshire. (She is separated from Sophie’s dad, Gareth, 45, an IT consultant.)
After a phone appointment, a GP gave Sophie a prescription of Gaviscon for indigestion. But a few weeks later, Sophie was in bed for five days because of her stomach pain.
‘It was during the pandemic and GPs weren’t doing face-to-face appointments,’ recalls Charlotte.
‘When we finally did get to see a GP, he examined her physically and said her stomach felt hard. He thought it may be an infection and said if she didn’t get better, he’d refer her to hospital.’
But a few days later, while on a family holiday, Sophie started bleeding – though she was too embarrassed to tell her mother.
‘I noticed it on the washing,’ says Charlotte. ‘I rang the GP and they told me it would be her first period. I told them it wasn’t, as she had been bleeding for eight days. But they still wouldn’t see her.
‘My gut instinct told me something was seriously wrong, so I phoned the out-of-hours service. Again, they said it would be her period and that if I was worried, to take her to A&E, which I did.’
In A&E at Portsmouth Hospital, doctors found a lump in Sophie’s stomach. She was referred for further tests and scans, which revealed a 12cm tumour.
It was diagnosed as a rare form of rhabdomyosarcoma, which occurs when immature muscle cells mutate, becoming cancerous, though the exact cause is unknown.
‘It was terrifying when they showed us on the X-ray,’ recalls Charlotte. ‘There wasn’t a clear space without cancer anywhere in her abdomen. I kept saying: “this is not going to be good”, over and over.’
‘Sadly Sophie’s experience is not unique,’ says Sara Wakeling, of Alice’s Arc, whose daughter Alice died in October 2019 from the same disease, aged seven.
‘I’ve seen many families struggling to get a diagnosis for months, even up to a year; symptoms are dismissed.’
Dr Jennifer Kelly, 41, who worked as a GP until 2018, and who runs the Grace Kelly Childhood Cancer Trust after losing her daughter Grace to cancer aged four, experienced first-hand the lack of training in childhood cancers.
She says: ‘Early training in medical school concentrates on adult cancer, mainly because of the numbers involved.
Dr Jennifer Kelly worked as a GP until 2018, and now runs the Grace Kelly Childhood Cancer Trust, after losing her daughter Grace to cancer aged four
‘One in two adults will experience cancer in their lifetime, compared to one in 450 children. It isn’t an excuse, but that’s the main reason.
‘Throughout your training as a GP you may never see a case of childhood cancer,’ she adds.
Sophie was taken for urgent surgery in September 2020, where surgeons tried to remove as much of the cancer as they could, but it was difficult because it had stuck to vital organs, including her bowel and ovaries.
The operation took seven hours and the surgeons managed to remove 95 per cent of the tumour.
Sophie then started chemotherapy. In seven months, she underwent nine rounds of it, the most aggressive plan available. She also had radiotherapy.
Charlotte recalls: ‘It was brutal to watch her go through, and so difficult for her. Even if she’d survived, it would have destroyed her fertility; she would have gone into menopause in her teens.’
Both chemotherapy and radiotherapy are toxic to the ovaries, and as a result immature eggs are unable to mature.
When Sophie finished chemotherapy, at the end of April 2021, all that was left was a minuscule area next to her bladder.
Dr Kelly says that early training in medical school concentrates on adult cancer, and that its possible to go through training as a GP without ever seeing a case of childhood cancer
Doctors decided to monitor it, and Sophie started on maintenance chemotherapy via an oral tablet.
The family dared to hope they were through the worst. But devastatingly, a routine scan just a couple of months later discovered new tumours.
‘The scan of her abdomen was lit up with tiny cancer cells,’ recalls Charlotte. ‘It changed from being about a cure, to how much time she had left.
‘More chemotherapy would have caused more problems with her bowel, as it was so damaged from the initial chemotherapy.
‘She’d relapsed so quickly that her body hadn’t had a chance to recover. Doctors told us there was no way she’d be able to cope with the pain.’
It was at this point that Charlotte had to break the news to her little girl – and Sophie set her mind to helping others and living life to the fullest.
Over the next two months, Sophie went on to complete an impressive bucket list, which included cooking with Gordon Ramsay and running an ice-cream van in her village.
‘She was still in the most awful pain, yet she did all these things with a big smile on her face,’ says Charlotte, who also had to explain what was going to happen to Sophie’s sisters, Lucy, then 14, and Amelia, eight.
‘It was the summer holidays and Sophie knew that she wouldn’t be here to start the new school year, so the school held a party so she could say goodbye to all her friends.’
Sophie had one further course of oral chemotherapy, in the hope it would slow the tumour growth. But it didn’t work – the tumour doubled in size within a week. From then on, she just had pain relief with high doses of morphine.
With a childhood cancer like rhabdomyosarcoma, so much rests on whether the initial treatment works, explains Sara Wakeling. If it doesn’t, or if there is a relapse, options are limited.
‘Treatments are rarely personalised to the tumour – that needs to change to improve outcomes. We need to see more funding and research into immunotherapy and cancer vaccines [which both ‘teach’ the immune system to destroy cancer cells] for children. Adult cancer research is way ahead, and we need to catch up.’
During her final weeks, Sophie was always thinking about other children in her situation, says Charlotte.
‘She sat down and made a list of ways she thought life might be improved for them. ‘She wanted to have a proper children’s menu, as it was food that adults would be offered, such as steak and kidney pie,’ says Charlotte.
‘And she wanted to introduce more play specialists into hospitals. Sophie wanted to create an environment which was as much like home as possible for children and their families.’
‘Top of the list was that Sophie wanted parents to be fed in hospital,’ adds Charlotte. ‘Countless times I’d sat by her bedside as she was given a tray of food, and I’d have to go to the canteen.
‘She never wanted me to leave her. She’d beg me: “have mine, and then you don’t need to leave me.” It was so wrong. All she wanted was me by her side.’
Sophie’s Legacy, set up in May 2022, has raised £75,000 ‘to feed parents in hospitals around the UK, with the proviso that the NHS hospitals that received our funding will carry this on when that money runs out’.
Initially, nine hospitals were involved in a pilot scheme and, in March it was scaled up to include another 15 hospitals, such as Bolton, Airedale, Morecambe, Guildford, Surrey and Sussex, and Exeter. Each hospital will now offer at least two meals per day to the parent or carer.
However, Sophie did not see any of this new scheme, as in September 2021, just a month after her tenth birthday, she died.
‘She wanted to die at home, so we brought her home one Friday,’ recalls Charlotte. ‘Doctors didn’t think she’d survive the weekend, but she hung on for eight days. Our family was heartbroken. We had lost such an incredible soul.’
Eight months later the family set up Sophie’s Legacy, ‘and we’ve since worked with the government and NHS England to try to implement the changes she so badly wanted’. The hope is that the new taskforce will see Sophie’s wishes become reality.
‘Charlotte has worked tirelessly to campaign for improved child cancer services and is making a real difference to other people’s lives, using an unimaginable tragedy of her daughter to campaign for much needed change,’ says Dame Caroline Dinenage, Conservative MP for Gosport, Hampshire, who heads the new taskforce.
‘The ultimate goal is to shape a future plan, getting cancer experts together to see if we can shift the dial on children’s cancer outcomes and support given to children and their families.
‘I hope the new Health Secretary gives the green light to continuing the important work being done and I have written to him to articulate the urgency of changing the way we detect, treat and care for children with cancer.’
As Charlotte puts it: ‘Even at ten years old, Sophie could see things that needed improving, and that’s the legacy she was determined to leave behind.’
