Funds sought for cancer battle boy
Wednesday 4th September 2013, 2:31PM BST.
The family of a 13-year-old boy who is suffering from a brain tumour have spoken of his “bravery” as they try to raise funds for treatment in the US.
Jamie Green has a highly aggressive type of cancer – medulloblastoma – which doctors fear may have spread to his spine.
It is the same type of cancer affecting Neon Roberts, the eight-year-old whose mother fought a legal battle to prevent him having radiotherapy due to the risk of side effects.
Jamie is currently being treated with chemotherapy before going on to radiotherapy but his parents are desperately trying to raise £250,000 to send him to the US for a special type of radiotherapy called proton beam therapy.
Proton beam therapy is currently being rolled out across the NHS but Jamie’s parents say it will be too late to save their son.
They have also been told by Jamie’s oncology team that his type of tumour does not meet the criteria required by the NHS for funding abroad.
Proton beam therapy targets tumours more precisely than traditional radiotherapy, causing less damage to surrounding tissue and fewer side-effects.
Some very rare cancers including tumours affecting the base of skull or spine can especially benefit from it.
Jamie, from Amersham in Buckinghamshire, was diagnosed in July and had immediate surgery at the John Radcliffe Hospital in Oxford to remove the tumour, which was more than 4cm in size.
His oncology team said that, while there were no physical signs of other tumours, scans had shown possible cancer cells may have travelled to the base of his spine.
Jamie’s mother, Anita Green, 40, and father, Steve Purvey, 44, are now trying to raise cash to send Jamie to the US for proton beam therapy after oncologists there said they would be willing to treat him.
Ms Green said: “Jamie is a bright young man with a wonderful sense of humour.
“From an early age, it was evident that he was intelligent and we can fondly recall him amazing us and his family time and time again with his natural ability to read, interpret and recall information and facts.
“He continued to excel academically and we were all delighted when last year he secured his place in his chosen grammar school.
“A typical teenager, he likes to spend his spare time playing video games, listening to music or watching the latest release at the movies.
“He has, and continues to amaze us all, with the strength and unbelievable bravery he has shown when facing such a scary and daunting condition.”
The Government announced earlier this year that £250 million is being committed to hospitals in Manchester and London to deliver proton beam therapy.
From 2018, it will be offered to up to 1,500 cancer patients per year at the Christie NHS Foundation Trust in Manchester and University College London Hospitals NHS Foundation Trust.
Adrian Crellin, NHS England’s national clinical lead for proton beam therapy, said: “While we can’t comment on an individual case, referrals for proton beam therapy are based on clinical decisions.
“All decisions on referral to treatment are made by the patient’s clinical oncologist who can refer to the UK Proton Clinical Reference Panel if they believe this treatment is clinically appropriate and meets the guidelines set by expert clinical advice.
“This can of course be very difficult for patients and their families and we understand their concern and disappointment if treatment is deemed to be inappropriate.”
A list of cancers approved for NHS funding for proton beam therapy does not mention medulloblastoma.
Jamie’s godfather, Dan Birchmore, said an appeal had been made directly to the funding panel at NHS England by the charity Kids ‘n’ Cancer but they had also been told the tumour type did not meet the criteria.
“The oncologist at John Radcliffe also told us the tumour is not on the list,” he added.