Reuben Dossett was just 17 years old when he was diagnosed with a rare form of cancer called synovial (soft tissue) sarcoma in January 2019.

A few months earlier he had developed an unusual swelling in his left leg. Reuben went to the GP twice over the next three months and initially the swelling was treated as a sports injury. Sadly, sarcoma cancer is so uncommon that a GP might only see one case in their entire career or never at all.

Having waited 6-8 weeks, as requested, for the swelling to go away on its own, on his second GP visit, in January 2019, Reuben was referred for an X-ray and then an MRI scan. He was told that the lump on his leg was most probably a sarcoma, a soft tissue cancer that usually develops in cells around joints and tendons. Later, a biopsy confirmed synovial sarcoma.

There are on average 79 cases of synovial sarcoma diagnosed every year in England and Reuben took the diagnosis in his stride. From the beginning, according to his father Steve, he wanted to deal with cancer in his own way.

He said: ‘For quite a while, he didn’t go around telling people. He wanted to be able to get on with things as normally as possible. These cancers aren’t very common and you don’t hear much about them but we thought they were treatable. We understood that it would be gruelling treatment but thought Reuben would get through it.’

While some sarcomas are treatable with surgery, they can also recur and metastasize (spread to other parts of the body) very quickly.

Reuben had chemotherapy to shrink the tumour, followed by radiotherapy on the affected area, then surgery. His family had a ski holiday already booked and doctors advised they continue with that and make the most of their time together.

Reuben was in and out of hospital for treatments – three cycles of on-ward chemotherapy, radiotherapy and two cycles of chemotharapy by infusion – but he tried to continue with life as normal still attending school when well enough. During this time, he managed to pass his driving test, completed his A-level studies, revision and exams, and a year later even started studying for a geography degree at Royal Holloway University in London.

Throughout more cycles of radiotherapy, chemotherapy and immunotherapy, Reuben never lost his smile. However, in June 2020, it was discovered the cancer had metastasized. A scan had revealed a shadow on Reuben’s right hip, a new tumour in his lung and that his original tumour was also growing.

At an appointment to discuss Reuben’s prognosis, the family realised their situation was about ‘buying time’. As the doctor told Reuben his cancer was terminal, he remained stoic and handed her a box of tissues joking: ‘This is the wrong way round.’

Reuben was gently advised to ‘prioritise’ what he wanted to do but he didn’t want to know how long he had left. The family took a holiday to Majorca and they wrote a list of all the things Reuben had always wanted to do, including getting a cocker spaniel puppy named Honey.

Steve said: ‘The doctors didn’t give us false hope and we knew it was serious. But Reuben was young and fit, we thought surely there must be an effective treatment available? We knew a lot of our friends and family were praying for him and we too prayed for a miracle.’

Despite continued treatment to slow down the growth of Reuben’s cancer, he became weaker, and by March 2021, he was given three weeks to live. Reuben was using a wheelchair and a bed was set up downstairs for him at home. He had lost his hair and he sometimes wore a wig.

Steve said: ‘He couldn’t eat very much anymore but he loved hearing about what people were cooking. We asked friends and family to send him their favourite recipes in the post, and Reuben held court from his bed. He refused to have any sedation as he wanted to be aware of his thoughts and his surroundings.

‘Reuben wrote a letter and left it on his laptop for us to read when he was gone which told us what he wanted to happen and gave us advice on how to continue. His main wish was for us to stay fit and eat healthily.’

The evening before he passed away, Reuben had a sudden spurt of energy and asked to be helped upstairs to his own bedroom. Steve said: ‘He was telling us how he wanted things done. It was a happy night, with lots of laughs until early in the morning.’

Ever the foodie, Reuben had ordered some smoked salmon from Scotland and some olives from Spain. His friends asked if they could visit the next day and Reuben was keen and wanted to look his best.

Steve said: ‘He wanted to look just right. We hadn’t seen him eat for a week but there he was, sharing olives and laughing with his friends.’ Reuben’s friends left at about 8.30pm and within two hours he had passed away – he genuinely lived every minute he was given.

Now, Reuben’s family, including his parents Steve and Kate, and brothers, Toby, 19, and Guy, 14, from Wokingham in Berkshire, have raised an incredible £60,000 in his memory for Sarcoma UK and the WWF.

They are determined to continue his legacy of positivity and hope. Their wish is for other people with sarcoma to have a better outcome through increased awareness and pioneering treatments.

Steve said: ‘Reuben lived every moment that he was given, and he was one of life’s greatest blessings to us. Throughout many cycles of chemotherapy, radiotherapy, surgery, and immunotherapy, he rarely lost his smile.

‘While he only lived for 19 years, he made a lifetime of memories. The year before he was diagnosed, we went on safari in Tanzania, which, as a supporter of WWF, was one of Reuben’s dreams, and he celebrated with his friends at the school prom.

‘Reuben was young and fit. When he was diagnosed with sarcoma cancer, we thought and hoped he would get through it. You don’t hear very much about sarcoma, and we had no idea about the dreadful treatments Reuben would need to try, but he didn’t want to be defined by his diagnosis.

‘The evening that he died, we were all there with him. We had been told that he didn’t have long to live but nothing could prepare us for seeing him take his last breath. His two brothers, Kate and I all held him. It was impossible to think that he was gone.

‘Reuben was a beautiful gift and it’s a privilege to have had him in our lives, and his attitude to his illness and his resilience doesn’t give us much permission to feel sorry for ourselves. Reuben is still very much a part of our family, and we see his touch in so many parts of our lives. We are so fortunate to have had him for as long as we did and he has given us so many life lessons to carry with us.’

Steve added: ‘He remained “Reuben” despite everything he went through. He didn’t let his illness stop him from living a full life and we will never forget, or stop loving, our beautiful boy.

‘Over two years on and we still can’t believe it, the memories pop up on our photo reels of happier days, and we struggle to come to terms and accept that he has gone and not just gone away for a bit. His brother is now older than him and his room is still the same as the day he left us.’

Kate will be participating in the National Three Peaks Challenge to raise further funds for Sarcoma UK in May. Fundraising helps direct the lost love into something positive.

For more details on fundraising, click here.