Father says daughter’s cancer treatment ‘million times harder’ than marathon

Sky, now aged four, was diagnosed with medulloblastoma, a tumour in her brain, in April 2021 after her parents noticed she lost her balance frequently and was not meeting some developmental milestones.

“She was about 14-months-old and she was just about able to pull herself up onto her feet but wasn’t looking like she was going to walk any time soon,” her father Benedict Barton told the PA news agency.

“Then she started regressing.”

Mr Barton and his wife, Emily, were concerned and took Sky to see the doctor.

“The GP said it was normal, she was within range. I don’t think they realised she was going backwards,” he said.

After another fall, they took her to the accident and emergency department at the Royal Surrey County Hospital – where Emily, 34, works as a chief pharmacy technician – and a CT scan found an enormous mass.

“It was shocking getting the news and being told that your 16-month-old daughter has got cancer. You can’t put into words how shocking it was,” Mr Barton told PA.

Along with the tumour, there was also hydrocephalus – fluid on the brain – so the family was rushed to St George’s Hospital, in Tooting, south London, where Sky had an EVD (external ventricular drain) put into her brain to clear the fluid.

A few days later, some of the tumour was removed and Sky’s recovery began but she was unable to move or talk although her communication had previously been good.

“That was almost the hardest thing to deal with. We felt like we had lost her,” said Mr Barton, 35, from Rudgwick, West Sussex.

After three weeks, Sky was given a shunt – a hollow tube placed in the brain to drain fluid – and things started to improve.

Her parents felt she was “coming back” to them when her speech began to return.

Sky had been diagnosed with medulloblastoma which is most common malignant (high grade) children’s brain tumour, according to Cancer Research UK which says around 52 children in the UK are diagnosed with it each year.

Doctors decided that the best treatment for Sky was a type of chemotherapy which goes directly to the brain, which was only available at Great Ormond Street Hospital (GOSH).

Sky was transferred and, in June 2021, started treatment which finished in May 2022.

She stayed at GOSH for nearly a year and trips home often ended abruptly.

“If she got a temperature after the chemo we had to rush straight into the Royal Surrey,” said Mr Barton.

“We pretty much did that every single week. We were in there a lot.

“There was one time when we were home for two hours and then back to the Royal Surrey.”

While Sky was having treatment, her younger sister Bo was born.

“We found out we were pregnant with Bo three weeks before we found out Sky was ill, so a bit of a shocking time,” said Mr Barton.

Bo, now two, spent the first six months of her life being brought up in GOSH.

“Bo was a brilliant baby,” her father said. “She got us through it in a way.

“The doctors and nurses loved seeing her.”

He added: “Obviously when I look back on it, we went through some pretty horrendous times, but it was made so much better by the amazing people at GOSH – it was made into a positive experience for Sky despite what she was going through.

“Sky was obsessed with all the nurses and doctors that would come in – every time a doctor would come in wearing a stethoscope, she would get really excited.”

He said the staff were “absolutely incredible”, adding: “I can’t thank them enough.”

In May, Sky will have been in remission for two years and now has scans every six months.

It took Sky a few months to get her words back due to the intensity of the chemotherapy and the family’s focus now is helping her to walk.

Sky currently uses a walker and is attending specialist physio for children to build her confidence.

“She’s very happy go lucky,” her father said.

“She is a great little character, always singing and talking and full of energy.”

Mr Barton, who works in sales for an IT services company, will thank the hospital on Sunday when he runs the TCS London Marathon as part of Team GOSH. He has already raised more than £3,000 from supporters.

He expects it to be more challenging physically and also more emotional than when he took part nine years ago.

“It’s a bit of a challenge but who doesn’t like a challenge?” he said.

“What Sky went through is a million times harder than running a marathon. It’s just a walk in the park really.”

Great Ormond Street Hospital Children’s Charity (GOSH Charity) raised more than £2.7 million from fundraising at the 2023 marathon when it was charity of the year.

Money raised by Team GOSH in 2024 will support the hospital’s most urgent needs, including helping to build the new Children’s Cancer Centre at Great Ormond Street Hospital. To find out more, visit gosh.org/cancer.

– To sponsor Mr Barton, visit: https://www.justgiving.com/fundraising/Teamskybarton?utm_medium=proxy_fundraising&utm_content=Teamskybarton&utm_source=copyLink&utm_campaign=pfp-share