Image: Daniel (far right) with brother Saul, dad Brian and mum Alison. Credit: Alison Caplan
Daniel was a boy who was vibrant and full of life. He was popular, loved music, football and having fun with his friends. He was planning on going to university to study International Business.
But in May 2020, just before his 17th birthday, he began to complain of headaches. Initially, we treated him with painkillers and he seemed to be fine. But by the third day, we became concerned. It was the middle of lockdown and we had all been cooped up indoors. I suggested that maybe Daniel just needed some fresh air, so we went for a walk. It was then we noticed that he seemed to be dragging his right foot. We later learned he had mentioned to a friend that he was losing sensation in his right hand – but he had never said anything to us about this.
We knew this wasn’t right and decided to take Daniel to the GP. Because of Covid restrictions, only one of us could go with him, so I stayed at home while Brian went along with Daniel. We never imagined that we would be facing a cancer diagnosis. There were no alarm bells ringing for us, we just assumed we’d be told he had a virus.
The GP immediately sent Brian and Daniel to the Queen Elizabeth Hospital. We had no idea what he suspected was wrong, only that he clearly had some concerns.
They waited there for a long time, but eventually Daniel was given a CT scan. At 10pm that night, Brian called me to say that I needed to come to the hospital straight away: they had found a mass on Daniel’s brainstem.
Daniel had an MRI scan and we were told his tumour was 5cm in diameter. Because of its position, it was suggested he undergo a biopsy to determine the exact nature of the tumour. The risks from this procedure were explained to us, but we all agreed that it was necessary.
Following the biopsy, we soon noticed a big decline in Daniel’s mobility. His motor skills in his right hand and leg were quite badly affected. But he was able to come home while we waited for the results.
We returned to the hospital the following week to get the biopsy results. We waited for ages, which I naively assumed was a sign it would be good news. But then two surgeons and a nurse walked into the room and I knew instantly it was bad. We were told Daniel had an aggressive brain tumour called diffuse midline glioma or DMG, a terminal brainstem tumour mostly affecting children. It’s previously been known as DIPG.
Daniel Caplan. Credit: Alison Caplan
“It was hard to believe there were no treatment options”
I had spent the week Googling different brain tumours – as had Daniel – so we were aware that we were being given the worst possible diagnosis. When we asked about treatment options, it was hard to believe that there weren’t any. We felt so angry.
Daniel started palliative radiotherapy straight away, the intention being to slow down the growth of the tumour. But we felt a sense of hopelessness from the moment he was diagnosed. We knew that he was dying – we were told he would have at most a year left to live.
We managed to secure experimental drugs from Germany and the United States and arranged for him to be part of a clinical trial for DIPG, but his cancer progressed so quickly he wasn’t able to take part.
During his illness Daniel was the bravest boy. He never complained once and was more interested in how his family and friends were feeling. He was so positive and happy-go-lucky, he didn’t like to think too deeply about what was happening to him. In the last three months of his life, he lost the ability to get up, so we had a hospital bed installed in our bedroom. One day, he started crying, saying ‘please mum, make me better’. I would have swapped places with him if I could – it was devastating that I could not save him.
Daniel wanted us to care for him at home. We had a wonderful nurse who came to administer his morphine, steroids and anti-seizure medication, but we looked after him.
He died at home on 30 November 2020, seven months after his diagnosis.
During his illness, Daniel was given a special gift by a local charity of a designer hoodie. He was so moved by this, he said when he recovered he would like to raise money for children dealing with a cancer diagnosis. He always hoped he would get better but understood the odds were against it. He also wanted to raise money for brain tumour research, particularly for his type of tumour. He wanted to give others the chance of treatment that he didn’t have. Brain tumours kill more children and adults under 40 than any other cancer and yet only 1 per cent of the national cancer spend is on brain tumour research.
Daniel wanted to change this and give hope to others diagnosed with this devastating cancer.
“We would like DIPG to no longer be a death sentence”
To keep his memory alive and to honour his wishes to help others, we set up the Doing It For Daniel Foundation in July 2021. Initially, our aim was to provide gifts for children who had been diagnosed with cancer at the Royal Hospital for Children in Glasgow and The Beatson West of Scotland Cancer Centre. We continue to do this today, funding special gifts, experiences, days out and holidays. Daniel loved the beach so we also bought a beachside property so that children with cancer and their families can have a break and some respite by the sea.
Image: Daniel and his mum. Credit: Alison Caplan
“No family should have to go through this”
Having achieved that, however, we wanted to focus on research. It would be a win for us if children diagnosed with Daniel’s type of cancer could have a treatment option that would at least give them a chance and even if it could not save them, a decent quality of life for the time they have left. Daniel lived for seven months after his diagnosis, but it was horrendous. For three of those months, he was bedridden. We would like to see a time when a DIPG diagnosis is not a death sentence, when children diagnosed with this type of cancer are not told that there is no treatment available to them.
We had followed Professor Chris Jones’ work in this field for some time and felt that we wanted to make a contribution to his research. So, to mark what would have been Daniel’s 21st birthday, we set about raising £21,000 to donate to the ICR for this purpose. We are proud to have achieved this and hope it will make a difference so that no other family will have to go through what we have experienced.
If I could change things and have Daniel back with us, of course I would do so instantly. He was such a force for life, he wanted to live so desperately. Throughout his illness, Daniel always told us how much he loved us. He constantly told me how much he loved me, his dad and his brother, Saul. Every day we think of him and long for him to be here. It is devastating for us every single day. But we want to keep his memory alive and give others the chance of treatment he never had.
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