Thank you so much to James’ parents for sharing their story with us.
James was diagnosed with a pilocyctic astrocytoma grade 1 on 24th September 2014 aged just 3 years old. James’ first major symptom started in August when he was getting severe headaches, shortly after that his parents noticed James’s head started to lean to one side, this was just the start, along with that James became very lethargic, stopped eating regularly and had problems with his balance which made day to day functions much harder for him.
With these concerns, his parents took James to visit the GP twice over 6 weeks, he was then urgently refereed to the hospital where an urgent MRI was ordered after the Paediatritian couldn’t see the discs in the back of his eyes. The MRI is normally a 20 minute procedure, however James’ lasted a painstaking 1.5 hours. James’ parents were told the heartbreaking news by the Paediatrician that they had found a very large tumour in the back of James’ brain and he would need to be transferred to another hospital. Within 4 hours of hearing the devastating news, James was taken in an ambulance to Addenbrooke’s in Cambridge from Colchester.
Six days later James had major surgery to remove his tumour and thankfully they were able to remove all of the tumour. Since surgery James has struggled with a number of things, the biggest being his bowels and at meal times which means being fed by a feeding tube.
James has scans every 6 months to monitor his condition but sadly another small tumour is growing however his last scan showed the tumour is stable.
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