A 13-year-old boy who battled an aggressive soft tissue cancer for a year told his mum he was not scared of dying, but feared everyone would forget about him. Jake Swinscoe, from Upton, died peacefully at home on April 26, 2024, just two weeks before his 14th birthday.
Jake, a sea cadet, began suffering from hay fever-like symptoms, watery eyes and a stuffy nose in early 2023. In July that year, his nose suddenly swelled up, and he was sent for an X-ray at Salisbury Hospital. He was subsequently diagnosed with stage 3 fusion-positive alveolar rhabdomyosarcoma, an aggressive soft tissue cancer.
Treatment and diagnosis
His mum Lynsey, 43, said: "It was a massive shock. I remember me and my daughter, when we came home from the hospital, we just sat in silence with no idea what to say."
She added: "I was with Jake when the doctors said they wanted a meeting. They told me he had a tumour. They didn't know what it was at the time, but said that he was probably going to be quite unwell for a while. I knew it was bad, because the consultant hugged me and seemed really upset."
Jake underwent nine rounds of chemotherapy and proton beam radiotherapy in London, with his overall care led by Southampton Children's Hospital. Lynsey said: "We were told that his tumour was 6cm by 4cm and it was in his nasal cavity. I remember when they showed us it on the MRI, it looked really big."
She continued: "When we got his full diagnosis, I went down a rabbit hole of reading about the different types of rhabdomyosarcoma, and the one I dreaded was the one he got diagnosed with. His consultant told me he only had a 20% chance of surviving the next five years. But you always hope that your child is going to be the one who beats it."
Terminal diagnosis and final decision
Halfway through his treatment, 90% of his tumour had shrunk, and the family was hopeful it would be a success. However, after nine rounds of chemotherapy and radiotherapy, in March 2024 he had another MRI, which revealed the cancer had spread into the fluid around his brain and spinal cord.
Jake's illness had reached the terminal stage, and he was offered further chemotherapy to prolong his life. But he decided to stop treatment to make the most of the time he had left. Lynsey said: "After we were told he was going to die, he was able to have more chemo, but just prolong his life. But he had started to suffer with seizures and he said he didn't want it. He said 'it makes me feel rubbish, if I've only got a few weeks left to live, I don't want to be ill'."
She added: "As a mum, that makes me really proud of him. He was only 13, and a lot of adults wouldn't be able to make a difficult decision like that for themselves."
Legacy and campaign
Lynsey described Jake as cheeky and funny, with a passion for rugby and the sea cadets. She said: "Jake was very accepting (of his illness). He never really complained about having to go into hospital because he knew how important it was."
She recalled: "I spoke to him in hospital and he said 'I know I'm going to die'. He said 'I'm not scared of dying. The only thing I'm scared of is that everyone is going to forget about me'."
Inspired by her son, Lynsey began studying radiotherapy at the University of Liverpool with the aim of helping other cancer patients. She has now teamed up with CCLG: The Children & Young People's Cancer Association, to share her story as part of its Child Cancer Smart campaign, which aims to help families and healthcare professionals recognise the early signs of cancer and support earlier diagnosis.
Cancer is the biggest cause of death from disease among children aged from birth to 14 in the UK. Around 1,900 children in this age group are diagnosed with cancer each year, with around one in 450 children diagnosed by the age of 15. Research shows that just 32% of adults would feel confident recognising the signs and symptoms of childhood cancer.
Lynsey said: "I would never have thought about doing it if it wasn't for Jake. I honestly think he was the bravest boy in the world." She added: "I don't want to scare people and say every cough or cold could be cancer. But children are being diagnosed with cancer. Cancer is the number one killer in children, even though its rare. So it's something I want people to be aware of."
