Ewan was just five when he was first diagnosed with a brain tumour. He underwent 12-hour surgery which severely damaged his neck and jaw muscles but after fighting his way back to recovery the tumour recurred in 2012. A further ten-hour operation followed.
Ewan’s parents Kerrie and Donald were told the surgery had been successful but he would need MRI scans every six months to ensure there was no regrowth of the tumour.
Kerrie tells her story:
“Ewan had his last MRI on 4 January 2014. At that stage, he was supposed to be having them every six months, as it was only 18 months since the last surgery and they were keen to keep a close eye on him.
When we started questioning why he hadn’t received his MRI appointment by the end of the summer in 2014, we were told that this neurosurgeon had emigrated to Canada and they were looking for a replacement.
We waited a few more months and after numerous further phone calls discovered a replacement was now there and he was working through the backlog of the previous neurosurgeon’s caseload.
Eventually we got an appointment with the neurosurgeon in December 2014 and we discussed Ewan’s next MRI appointment.
We were told that if Ewan could have the MRI without a general anaesthetic, there would be a six-month wait. If we wanted a general anaesthetic it would be nine to twelve months.
Ewan is very good at lying perfectly still in the scanner itself but he has a needle phobia which makes it very difficult for him when they have to inject the contrast dye.
“We opted for the non-anaesthetic route as we were keen to get the MRI done and we hoped that as he is getting older we would be able to talk and reason with him more about the needles.
However, by the summer of this year when we still had no appointment date we rang again and were told that the neurosurgeon was on a three-month sabbatical.
We phoned again in September and they told us that Ewan had been transferred to the waiting list for the new children’s MRI scanner (previously the Royal Victoria Hospital only had adult scanners) which is currently being installed but isn’t even operational yet.
It is a dreadful system and we are completely at the mercy of the hospital. We live in fear that the tumour will re-grow and worry whenever he complains of a headache.”
After we helped to highlight the family’s situation, Ewan was offered a scan which is due to take place next week.
As a Charity we continue to campaign for equal access to the best treatment and care for every person who has a brain tumour in the UK. Our strategy Defeating Brain Tumours defines our priorities over the next five years as we aim to create a world where brain tumours are defeated.