My tummy is better and there are no more wiggleys
BRAVE Daisy Fail plays with a bucket and spade... after digging deeper in the past eight months than most of us do in a lifetime.
Flashing her trademark smile, the three-year-old is finally in remission after proton beam therapy zapped her cancer.
Relieved mum Lynne said the tumour “has effectively been fried to within an inch of its life”.
The Sunday Mirror has followed Daisy on each precarious step of the way as she fought for her life.
The plucky tot grew weary of constantly having tubes – or “wiggleys” as she put it – inserted into her little body.
So when she finally got the allclear you had to smile when Daisy told her pals at nursery that “my tummy is better” and that she has “no more wiggleys”.
It was last November that Daisy was diagnosed with a rare and aggressive soft tissue cancer.
Lynne and husband Andrew were set to take the family 4,000 miles to Florida so she could have lifesaving proton beam therapy.
But when a new UK centre opened with miraculous timing in December, Daisy was thrown a lifeline much closer to home.
She is one of the youngest to have therapy at the £125million NHS facility in Manchester – just 150 miles from the family’s home in Consett, County Durham.
Lynne, 43, said: “We were prepared to fly anywhere in the world and do anything to save our daughter. But hearing that she could be treated here in the UK with her loved ones close by was nothing short of a godsend.”
The treatment uses highenergy protons instead of X-rays to target tumours without harming surrounding tissue. It increases the chance of survival.
Daisy has just been given the all-clear by her local hospital and Lynne said: “Words can’t describe how thrilled we are. Daisy has been bouncing off the walls since her final treatment.
“Hopefully we can move on and she can live a normal life now. She is aware of what’s going on – that her tummy was poorly and it’s better now. She’s just so happy, it’s wonderful to see.”
Daisy’s bladder tumour was spotted at Great North Children’s Hospital, Newcastle. She had soft tissue sarcoma rhabdomyosarcoma – diagnosed in fewer than 60 children in the UK each year.
During five weeks in hospital she had nine rounds of chemotherapy. Dad Andrew, 43, who works in car manufacturing, said: “She was so tiny. It was devastating. We were told it was aggressive and fast-growing. We couldn’t help fearing the worst.
“She was a little trouper but it was still heartbreaking to see. She lost all her hair, which was previously thick and curly, and she was quieter than we’d ever known.”
Revolutionary proton beam therapy was touted as her best treatment option.
The targeted radiation, beneficial to children at risk of lasting organ damage, drew worldwide attention after the case of fiveyear-old Ashya King in 2014.
His parents were arrested for taking their son – against NHS advice – from Southampton General Hospital so he could have proton beam therapy abroad. But a High Court judge backed them and Ashya was treated successfully in the Czech Republic.
Five years on, more than 1,000 Brits have received the pioneering treatment on the NHS. But until last year they were sent abroad.
Daisy’s family were told the NHS would cover travel to the UF Health Proton Therapy Institute in Jacksonville, Florida, where she would stay for up to two months.
It meant taking older daughter Scarlett, 12, out of school while Andrew and Lynne, who works for the NHS Prescription Pricing Authority, went on leave. Lynne said: “While accommodation and flights would be funded, living expenses and time off work would have crippled us. It added a lot of emotional and financial strain at an already horrendous time.”
So it was with perfect timing that The Christie Hospital opened its doors and Daisy is among 750 patients to be treated this year.
She was zapped with the treatment 28 times over six weeks, each session lasting 90 seconds.
Daisy was sedated and held in a body mould which was rotated as a series of high-energy protons targeted the tumour. It was tough and Lynne said: “At first Daisy would scream whenever they took her for sedation.
“She’d take her toy down there and sit on my knee and just cry, it was very hard to see. But the nurses were incredible and did a great job calming her down, playing all these games to distract her. Afterwards, I’d pop her on my knee and give her a cuddle.”
Daisy was discharged from The Christie and had two further rounds of chemo at Newcastle’s Royal Victoria Infirmary last month. But she had a serious infection from a reaction to tubes inserted into her body. Lynne explained: “It was horrible. Her body just rejected the tubes as foreign objects. She had severe lower back pain and began convulsing.
“We were terrified her body was just so weak after everything, but the staff got it under control.”
Finally, the day came when Daisy’s treatment was over. Lynne added: “It was a wonderful moment when she rang the hospital’s bell to signify the end of her treatment.”
Then, after an agonising three-week wait for results, MRI and CT scans and kidney tests revealed the tumour has shrunk from 8cm to 2cm – and Daisy is finally in remission. Lynne said. “Of course our anxiety that Daisy’s cancer will return will always be there. But we are just so grateful she’s still here.”
The family is now saving for possible future care for Daisy, who has been left infertile and with just one functioning kidney.
The toddler is back at nursery but will defer starting school by a year. Before that will be a big party as Daisy turns four next month.
Lynne and Andrew heaped praise on NHS staff and the treatment itself. They are also raising cash for the children’s oncology ward at the Royal Victoria Infirmary.
Another proton therapy centre is due to open at University College London Hospital next year. And private provider Proton Partners – which has three UK centres – is also set to accept some NHS referrals.
Lynne added: “It’s just amazing the treatment is now widely available for so many. It is truly life-changing.”
THRILLED Parents and Daisy, three IN THE PINK Daisy ‘has been bouncing off the walls’ says mum
I’M SMILES BETTER... Thrilled Daisy is well again Pictures: JOHN GLADWIN
TOUGH JOURNEY How Sunday Mirror followed courageous Daisy’s cancer battle