Sam John, a British 16 year old boy, was diagnosed with an inoperable brain tumor when he was 9. In March this year, tests revealed his tumor had started growing again and that he needed to get proton therapy in the US, as the treatment is not yet available in the UK.
Steve and Victoria John, of Fareham, UK, are now in America with their son. So far, Sam has had three treatments of proton beam therapy and will be in the US for another seven weeks.
“Sam’s doing well over here; he’s had his first three treatments now. That’s 28 more treatments before we can think about coming home”, Victoria said. “The good news is the therapy will definitely miss his pituitary gland – something they wouldn’t have been able to do in Southampton, but his hypothalamus and the top of his brain stem will be getting the full brunt of the proton. Short-term side-effects may be just losing some hair where the beams have gone through”
Plans are being looked at for PBT to be provided in the UK. An advisory group has recommended there are around 1,500 patients in England each year – including 250 children – for whom proton therapy would be the best treatment. It is hoped the service will be available in the UK within the next six years.
This type of state-of-the-art treatment costs at least £100,000, and at first the Johns were not sure if the NHS would cover the costs. The family has managed to raise £120,000, and the NHS might finally help too. The family has used some money to pay for their costs while in Florida and will donate the rest to charity.