Oscar

Oscar loved sports and from being one and a half years old he could throw a ping pong ball in the air and kick it, time and time again. This is when we knew he would be doing something involving balls when he got older, and we weren’t wrong – Oscar started playing football when he was four years old and loved it. He also started playing tennis and these two sports took up all his spare time, and some of his school time too if he could get away with it.

In January 2013 Oscar won a tennis championship and at this point was playing for the regional team. One Sunday at the beginning of February he went off to play football with the team an age group above his, and went on to score a hat trick. Upon coming home from that match he went to sleep for hours. We thought he had caught a bug or was exhausted from tennis and football. Two weeks and seven doctors and hospital visits later, Oscar was diagnosed with a brain tumour.

Oscar had a nine hour operation to remove the tumour and then six weeks of devastating radiotherapy, followed by a year of chemo. We knew that the harsh treatment meant that the chance of him playing his beloved football and tennis at the same level again were unlikely, but had hoped that we would again find some normality for him and his two brothers.

Unfortunately Oscar relapsed in late March 2014 as we were nearing the end of his chemo, and he passed away on the 3rd of May – only a week after he had shown us which football boots he wanted to wear when he was back on the pitch – Wayne Rooney’s new ones!

When Oscar relapsed, our network and community rallied around us and set up fundraising for what we believed would be his last chance at survival – a new and cutting edge treatment in America. It wasn’t to be for Oscar and for us, but as Oscar once said to me in the car on the way home from hospital; “Children who are 8 years old really shouldn’t have brain tumours and have to go through this – you should be at least 40 so you have had a good long life”.

Oscar’s story is unfortunately not unusual. Brain tumours are rare, however once a child or young adult is diagnosed with a brain tumour the odds of beating it long term are what we would call atrocious and unacceptable – in fact there are some paediatric brain tumours with 0% survival rate.

Even if a child does survive, the long term side effects from treatment are devastating. I don’t mean the short term chemo side effects that everyone is aware of, such as nausea and hair loss, as from what I have witnessed kids are like superheroes powering through those. I mean the long term side effects from radiation to the brain, because these are life changing and often most people are unaware of what happens once chemo is over and the patient is classified as a ‘survivor’. These children suffer from short term memory loss which makes it difficult to keep up at school; loss of hearing, making it difficult for them to play and socialise; slowdown of growth rates, which means taking hormones, bringing in itself a whole different set of side effects; loss of vision; change of personality; the list goes on and on.

This is why we have started a charity to help other children like Oscar. It is a legacy to my son and so is very fittingly called OSCAR’s PBTC (which stands for Ongoing Support, Care, Awareness and Research into Paediatric Brain Tumours). Our aim is to fund help for children and families affected, rasie awareness to improve diagnosis and fund much needed research into paediatric brain tumours.

In the last 30 years there has been only one new drug produced for childhood cancers and at the moment under 1% of the government cancer research budget goes to brain tumours. That is pretty shocking considering brain tumours are the biggest cancer killer in people under the age of 40.

So, we feel we can make a difference for all the children and will strive to do our best for them and their families.