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.
“Most of the time I have managed to stay positive – I have had to be strong for Charlie. The only time I really broke down throughout this roller-coaster was the day before my baby boy had his huge operation. I couldn’t help worrying that I might end up leaving the hospital without Charlie.”
Charlie was our first child and he seemed to be a very healthy and happy baby. But then we started to notice strange “episodes”. It was like Charlie was holding his breath at times. After the first time it happened in September 2011, we went to our GP who advised us to go to A&E at St Helier Hospital. After several trips to A&E, admissions to hospital and tests, doctors put it down to reflux. By this time, Charlie was having his episodes every five or six days.
Here is Charlie’s story as told by his mother, Kirsty…
Then Charlie had five to seven episodes in one day so we took him back to hospital where he coincidentally had one in front of a doctor. We were immediately told that this was not reflux – Charlie was having a seizure. An EEG revealed abnormal activity.
Charlie was put on anti-seizure medication which kept him clear of seizures for two months. In the meantime, he was put on a waiting list for an MRI scan.
At Christmas-time, we were shocked when Charlie had another seizure. By late January 2012, Charlie started once again having multiple seizures – this time every other day – and we still didn’t have a date for the MRI. Fortunately our GP managed to push for an appointment, but then there was a mix up over giving us the results. We thought everything must be fine, only to be given the shocking news when we took Charlie into hospital yet again because of a seizure, that he did in fact have a brain tumour. He was just eight months old.
It was terribly worrying – a real nightmare. We didn’t know what the future held for our little baby son. At this stage we didn’t know that Charlie’s tumour was slow-growing and benign, but when we finally met with the neurologist he gave us more information and advised us that Charlie didn’t need an operation. We just had to watch and wait.
In April, Charlie had another scan and we were gutted to find out that the tumour had got bigger, at the same time as the medicines, which had been controlling his seizures, stopped being effective.
Charlie was 11 months old in May 2012 when it was decided that he should have an operation to remove the oligoastrocytoma tumour in the right hippocampus region of his brain. It was absolutely horrendous thinking about him having to undergo such invasive surgery which would involve surgeons sawing through his skull and cutting through delicate parts of his brain when just a tiny mistake could leave him severely paralysed or worse.
Charlie underwent eight hours of surgery – the surgeon had to cut away part of his brain to get to the tumour which was behind his right eye. We were told it was a part of the brain not used in adults. He was in hospital for five days. Amazingly the only pain relief he seemed to need was Calpol and the surgery certainly didn’t affect his appetite.
A further scan in August showed that there was still something there, but we were told this could just be scar tissue. The doctors were confident that they had removed all, or nearly all, of the tumour and didn’t need to see Charlie again for another year.
In April 2014, an MRI revealed that the tumour was growing again. Charlie started 18 months of chemotherapy at the Royal Marsden Hospital in June that year. He can be quite sick and off his food on the weeks when he has two different doses of carboplatin and vincristine at once.
It was 13th January 2016 when Charlie finished his chemo after 43 cycles over an 82 week period. He had an MRI in February and again at the beginning of May to check that all was well. He will be having a further MRI next Monday, 19th September and we will be holding our breath for the results on Wednesday.
His scans to date have been very promising with no sign of the tumour, although we have been told that MRIs can’t pick up lumps smaller than 1cm square.
Meanwhile, Charlie is a bouncy, fun-loving, five-year-old boy who loves darts and golf and, of course, his little brother Freddie. He is just starting football training and has his first spelling test at school this week.
Most of the time, I have managed to stay positive – I have had to be strong for Charlie. The only time I really broke down throughout this roller-coaster was the day before my baby boy had his huge operation. I couldn’t help worrying that I might end up leaving the hospital without Charlie.
When Charlie was diagnosed with a brain tumour we obviously spent time finding out more about his condition and were horrified to learn that brain tumours were the biggest cancer killer of children, yet just 1% of the national cancer spend was allocated to brain tumours.
We really wanted to do something to make a difference, so along with relatives and friends who all came forward to offer their support, we set up Team Charlie Cox to raise funds for Brain Tumour Research.
Team Charlie Cox’s supporters have helped us raise over £33,000 for this pioneering UK charity with events including the Three Peaks Challenge organised by Charlie’s Dad Glen’s sister, Laura and also involving Glen and his and Laura’s brother Simon; Glen and some of his mates took part in the Winter Tough Guy race in January 2013 and Charlie’s Grandad ran the Brighton Marathon. The one positive thing about Charlie having a brain tumour is that we are back in touch with lots of friends we haven’t spoken to in ages and have also made new friends.
You can sponsor Team Charlie Cox at www.justgiving.com/teamcharliecox or donate by text – just text “QPWK78 £5” to 70070 (value can be adjusted). Follow on twitter:@teamcharliecox, or facebook: www.facebook.com/teamcharliecox