Our son kieran was diagnosed with a brain tumour in May 2016 which was removed two days later to stop him losing his sight only the tumour was wrapped round his optic nerve and pituitary gland. The surgeon managed to remove 95% of the tumour but kieran has been left with several medical conditions which mean he needs to take three different lots of medication at various times in the day. He has to take medication every day so his body can cope with stress if he becomes unwell or burns himself or breaks a limb he has to have an emergency cortisone injection which only oursrlves and staff at the school he attends have training for. He has lost his peripheral vision because of where the tumour was wrapped round his optic nerve. We were told after the first operation he might need to have the same operation in 5 years time. So imagine our shock when kieran went for a routine scan in November last year and we were told that the tumour had remained active and was producing cystic fluid which was building up in his brain. They operated again in February this year and managed to remove the rest of the tumour and drain the cystic fluid. We have now been told that kieran needs to go to America for proton beam therapy that will mean he should be tumour free for at least ten years. Without this treatment he will need to keep going into hospital every 6-12 months to have an operation to remove the cystic fluid.
While we are in America neither of us are being paid by our employers so as well as having to cope with the stress of dealing with the situation we are also going to be worrying about our financial situation. Over the past year we have had to take a lot of time off work to take kieran to addenbrooks hospital for his check ups.

Our hope is that we can go to America for kieran to have his treatment then we can get back to some kind of normality for the whole family.