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In Our Hearts Stories

Less than 20% of those diagnosed with a brain tumour survive beyond five years

Oscar Long

Primary school pupil Oscar was just six when he was taken ill. Within days he was diagnosed with an incurable and untreatable diffuse intrinsic pontine glioma (DIPG) brain tumour. Diagnosed at half term, he never made it back to school, but died at home a fortnight later surrounded by those he loved.

“Oscar had a brain tumour. It was aggressive and incurable. There wasn’t even any treatment which would have given us more time. We should take him home and make the most of the precious days we had left. Our precious boy never even made it back to school. He died in November 2002, just two weeks after his diagnosis. He was six.”


Oscar’s mum Sarah tells his story:

When Oscar became ill over half term there didn’t seem to be any immediate cause for concern.

Prescribed antibiotics for a suspected ear infection, we went home and expected he would be feeling better in a matter of days. Sadly, this wasn’t the case and, after a second visit to the GP, we were referred to Stoke Mandeville Hospital in Aylesbury where Oscar had an MRI scan and other tests.

I managed to get hold of my husband David who came back from work to be with us while my mum helped out at home looking after our eldest son Ben. Before we really knew what was happening, we were sent to the John Radcliffe Hospital in Oxford and that is where we received the devastating news.

Oscar had a brain tumour. It was aggressive and incurable. There wasn’t any treatment which would give us more time. We took him home and made the most of the precious days we had left. Our precious boy never even made it back to school. He died in November 2002, just two weeks after his diagnosis. He was six.

The tumour was a diffuse intrinsic pontine glioma (DIPG), a highly aggressive type of brain cancer. Our world shrank immediately and our lives played out within the confines of the walls of our house. I barely left Oscar’s side and everything revolved around what he wanted to do, looking after him and Ben. We played games together, made crafts, watched TV. Oscar went out with his dad a few times to go to the library or swimming but I barely left home. Being with Oscar became our whole world.

It was too painful to see anyone, to talk to anyone, to answer questions. I was protecting Oscar and I was protecting myself. My only wish was to spend every second I could with him. David coped much better than I did; he was incredible, the lynchpin in a time of unimaginable shock.

The only way to cope was to roll with it and to live day to day. We confided only in those who needed to know. Ben, who was eight at the time, was aware of what was happening as were the children’s schools and our immediate friends and family.

Everything happened so quickly. Once term started again, we had visits from teachers and messages and pictures from Oscar’s friends and classmates.

Oscar never said anything about what was happening to him. He would get upset if he saw I was upset and, just as we trusted the doctors when they told us there was nothing they could do, Oscar trusted us as we cared for him at home.

It is a great comfort that we were able to make him comfortable. We had nurses with us for his final days and nights and we are immensely grateful for their support. For that desperately short but intense time, they became part of our family and we put our trust in them completely.

Our close friends came to see us and Oscar’s teachers also visited with messages and pictures from schoolmates.

Oscar passed away on Remembrance Day, 11th November, 2002.

His school, Winslow Primary, held an assembly to remember him, and we helped to plant 1,200 daffodil bulbs which, every spring, burst into bloom spelling out his initials. Gestures such as this mean so much to us and it is important to know that, despite the years that have passed, Oscar is not forgotten.

To have lost a child to this most horrendous of diseases is devastating. There are no other words. I have no memory of some parts and suppose the shock and grief have caused me to block things out. The following months were hard and we were sometimes overwhelmed by our loss. We were lucky to have the support of close family and friends. We often think how difficult it is for those without a strong support network.

Oscar was laid to rest at St Laurence Church in Winslow, just across the road from our home. To begin with, I visited his grave every day and, although I still go regularly, I don’t feel I need to go as often now. Over time my loss has become less raw although my grieving wasn’t done as I lost both of my parents over the two years that followed Oscar’s death.

He remains in our hearts of course and is still with us, a part of our family. We went on to have two more children, Leo, who was born in October 2003 and Niamh who came along in May 2005. It was always our intention to have a big family and something we had spoken to Ben and Oscar about.

This year we are celebrating what would have been Oscar’s 21st birthday. Always a livewire and very sociable, I imagine he would be enjoying life with a big group of friends around him.

Over the years we have learnt that DIPG is the most lethal of all childhood brain tumours with the bleakest of survival rates. We have learnt that brain tumours kill more children and adults under the age of 40 than any other cancer. And we have learn that less than 1% of the national spend on cancer research has been allocated to this devastating disease.

There was nothing to save Oscar at the time. Nowadays we read about children travelling abroad for experimental treatment although, sadly, not much has changed in the 15 years since we lost our son. I hope that by sharing Oscar’s story as we celebrate what should have been his 21st year will help to raise awareness and to encourage the government and larger cancer charities to invest more in research into brain tumours.

Sarah Long
October 2017

 

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 has been allocated to this devastating disease. 

If you have been inspired by Oscar’s story and would like to make a donation to Brain Tumour Research please go to https://www.justgiving.com/fundraising/sarah-long19 or leave a gift in your will via https://www.braintumourresearch.org/legacy

Together we will find a cure.

The views or opinions expressed within are not necessarily those of Brain Tumour Research. This content has been shared for information purposes only. Brain Tumour Research does not recommend or endorse any particular treatment. If you have or suspect you may have a health problem, you should consult your doctor or other suitably qualified medical professional. Our member charity brainstrust can provide additional information on treatment options.

Oscar Long lost to a brain tumour

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