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Just 1% of the national research spend has been allocated to this devastating disease
The diagnosis of a brain tumour is devastating, however there is hope. We have been fortunate to meet some very brave people who have survived to tell the tale and who want to share their story to give hope to others.
The life of schoolboy Kian Jones was saved by his mother’s determination to pursue an accurate diagnosis of her son’s headaches and sickness. Trainee nurse Sabina’s relentless demands for a brain scan proved her instincts were correct. Kian’s condition was life threatening and he underwent emergency surgery. He is now settling back into “normal” life.
Here, Kian’s mum Sabina tells his story …
Football-mad Kian was an ordinary, happy 12-year-old boy when he started to have headaches. He was vomiting and also had problems with his vision. I realised something was badly wrong. At the time I was training to be a nurse and I wasn’t happy with what the doctors and later the hospital were telling me. They said it was migraines or a stomach bug but I knew it was more than that.
It was a month or so later that I Googled his symptoms and began to fear the worst: I could see that a lot of his problems matched those of patients who had brain tumours. Armed with this information I demanded that he have a scan.
When this eventually happened, our darkest fears were realised. Kian underwent surgery in October 2012 to have a rare yolk sac tumour, with a second tumour inside it, removed from his brain. The doctors told us that had it been left undiagnosed for even a week longer, Kian would not be with us today.
Our little boy needed surgery and there was no choice to make. Without an operation to attempt to remove the tumour he would die, with the operation there was a good chance he could die on the table.
The worst thing as a parent is that this is something which is totally beyond your control. We had to put our faith in the medical team and to trust them that they would do their best and Kian would get through it.
To our great relief the surgery was a success and slowly but surely Kian made a good recovery. He underwent weeks and weeks of chemotherapy and lost months of school time. We are extremely fortunate that Kian has not suffered any personality changes.
He is about to choose his GCSE options at Belvidere Secondary School in Shewsbury and we feel that life is now beginning to get back to normal. Of course we still remain in regular contact with his medical team both locally and in Birmingham, where he had his surgery and treatment. Results of his latest scans have shown things are healing well and there is no recurrence of the tumour. This means that instead of having scans every three months we are down to every four months. It’s very positive and although we are still anxious that things may change, for the moment at least, things look good.
While Kian was ill I had to give up my studies but I am now in my second year training to be a nurse at Royal Shrewsbury Hospitals NHS Trust.
Brain tumours kill more children and adults under the age of 40 than any other cancer ... yet just 1% of the national spend on cancer research is allocated to this devastating disease. This is unacceptable! So far, together with our friends and family, we have raised £4,000 for Brain Tumour Research and are committed to continue to help raise funds and awareness.