For two years, Samuel had been suffering with headaches which had been diagnosed as migraines. But in April 2013 they became more frequent and were accompanied by double vision. Just days later, Samuel was receiving treatment at Great Ormond Street Hospital (GOSH) for a brain tumour.
“It’s difficult to describe how you feel,” said his mum Lynn. “The news is incredibly shocking especially when you have a child who looks as healthy as any other 12-year-old and is very active and plays tonnes of sport, goes out and is sociable. But we knew something was not quite right.”
Samuel had been opening the bowling for his school First XI cricket team and had to retire to the boundary where he explained to his dad that he could see two batsmen when he ran up to bowl.
Samuel was violently sick at school the following Monday and a visit to his GP, led to an appointment with a paediatric ophthalmologist the following day. A brain scan showed the tumour and Samuel was admitted to GOSH the same evening. The vast majority of his tumour was removed by surgeons during an 11-hour operation 36 hours later.
He was back in the operating theatre soon after to remove the final tiny piece of tumour before being referred to UCLH for radiotherapy.
It was at UCLH that consultants took the decision that Proton Beam Therapy – the world’s most advanced form of radiotherapy – would be the best treatment to reduce the risk of the tumour returning.
Proton Beam Therapy is a particularly important form of cancer treatment as it targets tumours more precisely with less damage to surrounding tissues. This can improve the quality of life following cancer treatment and reduce side effects, especially for children.
But because high energy PBT is not available in the UK, Samuel was referred to the Oklahoma Proton Beam Therapy Centre for his treatment - thousands of miles from the family home in Ealing which he shares with his mum and dad, brother Benedict and sister Lauren.
Mrs Oliver said: “We thought: ‘Let’s make the most of it and explore part of America we would never have visited’. But it was obviously disruptive to the household. We are always busy and there is always stuff going on but we had to take two months away from London to support Sam through his treatment.
“Had PBT been available in London, we would have been able to carry on with life as normal – other than two hours a day coming into town. For us, the timing of the treatment was fortunate as it was the summer holidays so the whole family could spend three weeks together in Oklahoma. Sam was also lucky that his tumour was operable so the travelling was not a huge problem and he remained physically very well through the treatment. For others it might be a different story.”
From 2018, PBT will be offered to patients in the UK at UCLH and The Christie NHS Foundation Trust in Manchester. The Government has committed £250 million to fund the two centres.
UCLH’s planning application to build its centre was approved by Camden Council planners yesterday. Pending approval by the Greater London Authority, it means building work could start on the centre in spring 2015. The aim is to open the centre in 2018.
The UCLH service will be delivered from the Trust’s campus in the heart of the capital where it enjoys a close collaboration with UCL on groundbreaking research projects. The site has direct access to the UCLH’s existing radiotherapy department and will be a stone’s throw from the new University College Hospital Macmillan Cancer Centre. The proposal was developed with the support of the UCLH Charity.
The UK service will bring together some of the world’s leading specialists in complex cancers. Together, the Christie and UCLH will see more children and teenagers with cancer than almost any other centre in the world, and more adults with brain cancers than any other centre in the UK. The two trusts will also be able to drive forward research into what remains a relatively new treatment.
Dr Yen-Ch’ing Chang, UCLH lead on Proton Beam Therapy, said: "Proton beam therapy’s main advantage is that less normal tissue is irradiated. This is a particular advantage in children and young adults. Irradiating healthy tissues in children and teenagers can result in significant long term effects, such as problems with growth, IQ, development through puberty, hormone deficiencies, fertility, as well as an increased risk of the development of a second cancer.
“Proton beam therapy significantly reduces the chance of such side effects occurring.
“Cancer patients who might benefit from proton beam therapy include children and teenagers, as well as some adults with complex tumours of the brain, head and neck, bone and soft tissues."
Samuel’s treatment was a huge success and he was starting his new school just days after the plane from Oklahoma landed back in London.
“He was completely up for getting back into normal life as quickly as he could,” said Mrs Oliver. “He returned to playing hockey for his County, he has taken up Fives, and plays squash – representing his School at both sports and is doing well academically. He’s throwing himself into everything and doing incredibly well!”
Samuel Oliver said: “It will be really helpful for patients and the rest of their families when proton beam therapy (PBT) comes to London. It means they will be able to get on with their normal lives and have treatment without needing to uproot people around them.
“I was lucky – I had my treatment during the summer holidays but for most patients and their families, it would not be so easy to spend months in America.
“When I was in Oklahoma they showed me the diagrams about how proton beam therapy means much less of your brain gets affected by the radiation compared to traditional radiotherapy. That’s a really good thing. It allowed me to have the treatment and get on with rest of my life and do all the things I did before.
“It’s important to stay positive during your treatment. One of the things I really enjoyed in Oklahoma was to go to a museum after my treatment in the morning or spend some time by the pool. It was really important that the treatment didn’t take over my life so I tried to make something else the focal point of my day.
“If people are coming to UCLH from outside of London then there is lots for them to do. It’s an exciting opportunity to explore the capital.”