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In Our Hearts

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

The diagnosis of a brain tumour is devastating for the patient, their family and friends. 

For these people life will never be the same again.

These very brave people will remain in our hearts for ever and it is because of them that we are fighting to find a cure so that no other family should have to suffer in the same way.

We thought of you with love today, but that is nothing new.
We thought about you yesterday, and days before that too.
Anon

You are forever in our hearts.                                                         

Joe Wilson

Our son Joe was only eight when he was first diagnosed with a brain tumour and underwent surgery. He recovered well and we managed to get on with life despite the anxiety of knowing there was a high chance the tumour would come back. Joe was so positive and carried on even when he had to undergo radiotherapy at 13. Joe left home and started a new life at university. Within months he suffered a seizure and never fully recovered. He was 20 when he died at home with his fiancé of two weeks and us at his bedside.

“Joe’s brain tumour dominated the whole of his adult life. Despite everything he remained outgoing and managed to keep his positive outlook, he had a great love of life. He had just started at university when his tumour came back with a vengeance. He had met a great girl who he loved and they got engaged two weeks before he passed away with his head on my shoulder and surrounded by those he loved.”

Here is Joe’s story, as told by his father Paul Wilson…

I was a corporal in the RAF and we were stationed in Cyprus when Joe was born in November 1992. My wife Mandy and I had moved out there about six months before. In many ways we had a dream existence; a lovely baby, lots of friends, and a great life in beautiful sunshine.

Mandy had competed as a showjumper in her youth and qualified for some of the big equestrian events such as the British Show Jumping Association Championships at Wembley. She left the family business where she worked as a riding instructor when we were posted abroad but horses continued to be a big part of our lives when we returned to the UK the year after Joe’s birth.

Mandy was running Shawstown Riding School at Penton near Carlisle when Joe first became ill. He was eight years old and would wake up in the night with headaches so severe they caused him to vomit. Our GP prescribed medication for migraines but the headaches continued. Things seemed to worsen and I can remember clearly how he sat watching TV and said: “Daddy, the pain is behind my eye.” 

The migraine diagnosis didn’t make any sense to me. The pain was so severe that it would wake Joe from a deep sleep and there were no outside stimuli which you often get with migraine. Eventually it got to the stage where we were at the hospital and I told them I wasn’t leaving until they could tell me that my son did not have a brain tumour.
After that he was seen by an ophthalmologist who, straight away, saw there was massive pressure behind Joe’s eyes. A CT scan confirmed our worst fears. I can remember how ludicrous it seemed that a nurse said nothing as she walked with us holding a box of tissues as we made our way back to the consultant’s office.

Mandy and I were devastated. We told Joe there was something growing in his head, behind his eye, and it needed to be sorted. Joe was always so brave. Within days he was in surgery at the Freeman Hospital in Newcastle where the care was exceptional.
 
The operation lasted for nine hours, he recovered unbelievably well and was home within ten days. We were told that Joe’s tumour, a glioma, was in his right frontal lobe and had grown to the size of a lemon. It was classified as low grade, with some elements of high grade, and there was a 70% chance of it coming back.

Within no time at all Joe was back to his normal, energetic self. He was tearing around on the ponies and up to all sorts. He had always been an extrovert and very positive about life. It was almost as if he knew he had limited time and needed to make the most of every moment. 

Joe had a scan every six months to see if there was any change in his condition. It was such an anxious time and it seemed as if the whole year was hinged around those hospital dates. Would it be bad news or could we dare to relax a bit for the next few months? Five years after the initial diagnosis, the tumour was back. We had hoped against hope but our worst fears were realised. Joe was 13 and took everything in his stride. Throughout November and December 2005, we drove the 90-mile round trip to Newcastle so he could have radiotherapy every day. I had left the RAF by then and work were really good. Joe and I were alike in many ways. He had the thick hair which I’d had in my earlier days and he found it really hard when his started to fall out during the treatment. It was the only time I saw him in tears about what he was going through. I reassured him that his hair would grow back whereas I was bald and mine never would.

We had a busy life, with parties, lots going on at the riding school, and football presentations. He continued to play cricket with a local team too, he was show jumping and we went open water swimming together. There are lots of happy.

After senior school at William Howard in Bampton, Joe went to the University of York to study sports science and injury management. In September, we loaded the car up with all his belongings and dropped him off to start his new life. Within two months he met Tasha, a wonderful girl, he had some great housemates and was having the time of his life. He was happy as Larry. Tragically his happiness was so short-lived. We had a phone call out of the blue in February. Joe had been admitted to hospital with a seizure.
We managed to get him transferred from York to Newcastle where he was back under the care of consultant Simon Bailey. Within days Joe was back in surgery. This time the prognosis was extremely poor. The tumour was back but, this time, it was high grade, on the other side of his brain and there was no cure. He could have chemo and potentially radiotherapy although there was some doubt about the latter as he had already had so much treatment.

Although Joe did come home he was extremely poorly after the surgery. His head was swelling, there was great pressure building up and post-op bleeding. We were told that he was dying and could have as little as two weeks. Joe knew the tumour was going to kill him we couldn’t bring ourselves to tell him just how little time he had. We told him he was coming home to rest.

Tasha took time out of university and spent the last weeks with Joe at our family home in Carlisle. Two weeks before he died, they got engaged. We were happy for them although we didn’t really talk about what he felt the future might look like. Joe held on until Tash’s 19th birthday before he fell asleep and passed away the following day, 30th April 2013. Despite her young age, Tash was incredible and showed Joe such love and care. It was very touching to see how much they loved each other and we were pleased to be able to share those final weeks with her. 

In the end, I lay with Joe on the bed and he died with his head on my shoulder and with his fiancé, his mum and grandma at his side. Joe was our only child and we lost him when he was just 20. You try to get on with life but you never get over a loss like this. We are fortunate to have lots of good people around us including a big family. I have 11 nephews and nieces who were close in age to Joe and like siblings to him. We have get-togethers twice a year and it just seems so cruel that he is not here with us. When people ask if we have children I tell them we have a son called Joe but that he passed away.

Brain tumours kill more children and young adults like Joe than any other cancer yet just 1% of the national spend on cancer research has been allocated to this devastating disease. 

When you have suffered a bereavement like this, I know some people find it hard to say the right words or to say anything at all. The fact that so many have been inspired to raise money for Brain Tumour Research in Joe’s memory means a lot. To date, our fundraising total stands at just over £21,000 and we take comfort from knowing that Joe was loved and is remembered.

Joe’s brain tumour dominated the whole of his adult life. Ironically, just before he started at uni, he had a brain scan which showed he was tumour-free. Finally, it seemed as if he was through it so the fact that it came back and grew so aggressively in a matter of weeks was the most devastating shock.

Paul Wilson
March 2017
Joe Wilson In Our Hearts

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