When Lynsey Swinscoe noticed her 13-year-old son Jake had a stuffy nose and watery eyes in June last year, there could be only one explanation.
‘I figured it must be hay fever,’ says Lynsey, 41, from Wiltshire. ‘So I bought him some antihistamines, to see if they would help.’
And they did. But when Jake’s dad Adam, 42, returned home a few weeks later, he noticed something odd.
‘Adam is in the Army,’ says Lynsey, a civil servant with the Ministry of Defence, ‘and when he saw Jake he noticed the bridge of his nose looked a swollen. Because I’d been with Jake a lot, I hadn’t noticed the gradual change.’
Although neither parent was unduly concerned, they booked Jake an appointment with their GP, who immediately sent him to A&E where a CT scan revealed a growth inside his skull.
Jake Swinscoe, 13, with his big sister Ava in hospital. Jake was diagnosed with stage-three alveolar rhabdomyosarcoma, an extremely rare and aggressive soft-tissue cancer that mainly affects teenagers and young adults
Before his death, Jake’s parents took him out in a Lotus supercar – a dream come true for him
‘It was the size of an egg and pressing on his brain, which was what was causing the hay fever-like symptoms,’ says Lynsey.
Suddenly the family found themselves in the midst of a medical emergency which saw Jake transferred to the Piam Brown Unit at University Hospital Southampton, a specialist cancer centre.
Doctors there delivered a devastating diagnosis – Jake had stage-three alveolar rhabdomyosarcoma (ARMS), an extremely rare and aggressive soft-tissue cancer that mainly affects teenagers and young adults. Because of its location, the tumour couldn’t be removed. Jake had emergency chemotherapy as the cancer had spread to his lymph nodes.
Lynsey says: ‘We were told Jake had a 20 per cent chance of survival over five years, but he was just very keen to get on with treatment and live his life. His consultant said she’d never met such a determined kid.’
ARMS can occur anywhere in the body, and symptoms differ depending on where the tumour is, its size, and whether it has spread.
Jake had nine cycles of chemotherapy and six weeks receiving proton-beam therapy – a targeted, high-dose form of radiotherapy.
A CT scan revealed a growth inside Jake’s skull that was the size of an egg and pressing on his brain, which was what was causing the hay fever-like symptoms
Jake died on April 26, and his mother says his funeral was just how he planned it
‘Jake was really sporty, a big fan of motor racing, and loved anything in the water,’ says Lynsey. ‘It was so sad to see him unwell and missing his favourite activities.’
An MRI in November revealed the tumour had shrunk by 90 per cent and Jake’s lymph nodes were free of cancer. But in March a follow-up scan showed that although the tumour had gone, cancer cells had spread into Jake’s spinal cord and the fluid around his brain.
Lynsey says: ‘His response was, ‘That’s fine, what treatment can I have now?’ The consultant had to explain it wasn’t something that could be cured.’
The next week Jake suffered a huge seizure, due to swelling on his brain.
‘We had to make the decision to remove Jake’s ventilator and sedation if he didn’t respond within 48 hours,’ his mother says. ‘But in true Jake style, he woke the next day asking why we were crying.
‘We took him home and Adam arranged for Jake to ride in a Lotus supercar, which was a dream come true for him.
‘Sometimes I’d wake in the morning and find he’d climbed into bed with his big sister Ava. The bond he had with her was incredible – their close relationship helped give him normality.’
Lynsey was beyond impressed with how Jake dealt with his prognosis. She says: ‘One day I found him creating a Word document with images of a pale blue coffin and pale blue flowers. He wanted his funeral to be a celebration, more like a party.
‘When I spoke to Jake about dying, he told me he was annoyed he hadn’t had a chance to live his life, but he believed it would be a lot harder for us than for him.’
Jake died on April 26, and his mother says his funeral was just how he planned it: ‘After the celebrant had finished her speech, she said, ‘Now, who’s ready to party?’ and Happy by Pharrell Williams began to play. His friends did the conga down the aisle to his coffin, stopping to give it a high-five or tap to say goodbye. I can’t think of the funeral without smiling, but we miss him so much.’
