MUCH of Ciara Allan’s young life has been spent bravely battling illness. Since suffering a stroke caused by a brain tumour shortly before her third birthday, she has faced three major brain operations and chemotherapy.
Now, thanks to pioneering treatment in the US, Ciara and her family have new hope that they will beat the tumour, which had been showing signs of growth.
The 11-year-old is one of small number of Scots who have received NHS funding to travel overseas for proton therapy – a form of radiotherapy that allows tight focusing on a tumour, minimising damage to surrounding healthy tissue. Speaking for the first time since Ciara completed treatment, her parents – Robert and Lloret, from Islay – say they are hopeful the treatment has been a success. Robert says they first found out about proton therapy after being told the chemotherapy she had been receiving had not worked and her tumour was growing. The family was told she needed a further operation and conventional radiotherapy in the UK, before learning she was a strong candidate for proton therapy funded by the NHS.
Robert, talking as they prepare to fly back from the US, says: “It was amazing because initially we hadn’t heard of proton therapy so as soon as they mentioned it to us we went away and did a lot of research on it. Between Lloret and I we decided that if she didn’t receive the funding we were going to try to fund it ourselves. If we had to sell our home we would have done, but fortunately it was approved by the NHS and we came to Oklahoma.”
The family were told that the treatment alone could have cost them around £250,000, plus the travel and accommodation costs of taking the whole family – including their other children Ila, nine, and Lorne, seven, out to America.
The community on Islay have also been busy fundraising to help pay the family’s costs while they have been out in the US. “Standard radiotherapy was still available on the NHS, but obviously that does a lot of damage to surrounding tissue,” Robert says. “When we read up on the proton therapy it is a lot more accurate and does a lot less damage to surrounding tissue which when you are taking a brain into consideration is a very big issue, especially for a child.
“She had already had three major brain surgeries and bits of the brain removed, so we were trying to do as little further damage as possible.”
The family flew to the ProCure centre in Oklahoma on 28 November, only returning to Scotland last week after the lengthy treatment process which involved Ciara receiving 30 sessions using the proton beam.
Robert says: “It is administered like a laser beam of radiation. Ciara had to get it from four different angles. She had a mask that was fitted the first day she came, which had points on it where they lined up the laser beams to make sure they got to the correct position every time. She had to lie perfectly still for half an hour while the treatment was going on.”
Lloret says her daughter coped well with the therapy, helped by listening to music: “She managed every day really well because she had One Direction playing in the background which helped her lay very still. She also had her One Direction pillow and blanket.
“So she cuddled into that and listened to her favourite boyband and that made her lie there as still as possible every day for the 30 days.” The family must now wait to see if the treatment has been successful, but are confident based on the success seen in other patients.
Robert says: “We have been told that they have been able to give her the treatment as intended. We have been advised to wait five or six weeks before any MRI scan to let everything settle back down again. We are hoping to hear from Yorkhill [Children’s Hospital in Glasgow] soon to get a date for an MRI scan, which we hope will be in early March. The treatment seems to have quite a high success rate so we have no reason to doubt that we won’t have some sort of progress.”
Since 2008, 21 patients have been sent overseas from Scotland to have proton therapy. Last year, the Department of Health at Westminster announced plans to create two proton therapy facilities – in London and Manchester – to be opened in the next five to six years.
The family said they would also like to see the treatment available in Scotland so other families did not have to travel long distances.
Robert says: “It has been amazing coming to Oklahoma and sometimes we have forgotten why we are here, it has been so relaxed. But it has been a big upheaval to come here and if it was available in the UK it would be a lot easier and more readily available to other people. It would be better to have one closer to home. Even for people in Scotland to travel to England for three or four months would be an upheaval almost as much as coming to the US.”
The family say they felt very welcomed by staff and patients at the centre, who invited them to parties and out on trips. They even made it to Disney World and SeaWorld in Florida, where Ciara was able to feed the dolphins. “It was magical, amazing, fantastic,” she says.
As she continues her recovery, Ciara’s attention has now turned to celebrating her 12th birthday later this month, which includes a trip to see One Direction perform in Glasgow. She will also meet the band backstage thanks to charity campaigner Les Hoey who helped organise it.
Ciara says: “My mum and dad have promised me a big party for the island, so I am hoping to have that for my birthday.”
What is proton therapy?
• Proton beam therapy (PBT) is a very precise form of radiotherapy to treat patients with cancer and other tumours. The technique uses charged particles, protons, instead of electromagnetic radiation – such as the X-rays normally used – to kill targeted cells.
• Experts believe it can be a more effective treatment because it directs the radiation much more precisely, and protons are less prone to scattering than X-rays, minimising damage to surrounding tissue.
• Growing evidence suggests that proton therapy can be effective in treating a number of different types of cancer, and is most effective treating children and young people with brain tumours.
• In these cases the therapy produces fewer side-effects, such as secondary cancers, growth deformity, hearing loss and learning difficulties.
• Patients in the UK currently have to travel overseas to have proton therapy. The NHS commissions treatment from three centres – one in Switzerland and two in the US in Jacksonville, Florida and Oklahoma.
• New centres planned for England in the next five to six years will be able to treat many more patients than currently are able to fly overseas for treatment. Each centre would be able to treat up to 750 patients a year.