Jake’s mother thought his stuffy nose was hay fever… in fact, it was stage three cancer. Here, she reveals some of his heartbreaking last words before he died

When Lynsey Swinscoe noticed her 13-year-old son Jake had a blocked nose and watery eyes in June last year, there could only be one explanation.

‘I thought 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, came home a few weeks later, he noticed something strange.

“Adam is in the military,” says Lynsey, a Defense Department official, “and when he saw Jake, he noticed the bridge of his nose was swollen. Because I had been with Jake a lot, I hadn’t noticed the gradual change.”

Although neither parent was too concerned, they booked Jake into an appointment with their GP, who immediately sent him to A&E, where a CT scan revealed a growth in his skull.

Before his death, Jake’s parents took him for a spin in a Lotus supercar – a dream come true for him

“It was the size of an egg and was pressing on his brain, causing the hay fever-like symptoms,” Lynsey says.

Suddenly the family found themselves in a medical emergency and Jake was transferred to the Piam Brown Unit at University Hospital Southampton, a specialist cancer centre.

Doctors there made a devastating diagnosis: Jake had stage three alveolar rhabdomyosarcoma (ARMS), an extremely rare and aggressive cancer of the soft tissues that mainly affects teens and young adults. Due to its location, the tumor could not be removed. Jake received emergency chemotherapy because the cancer had spread to his lymph nodes.

Lynsey said: ‘We were told Jake had a 20 per cent chance of survival over five years, but he was just keen to get on with the treatment and live his life. His advisor said she had never met such a determined child.”

ARMS can occur anywhere in the body and symptoms vary depending on the location of the tumor, its size, and whether it has spread.

Jake underwent nine cycles of chemotherapy and six weeks of proton therapy – a targeted, high-dose form of radiotherapy.

A CT scan revealed a growth in Jake’s skull that was the size of an egg and was pressing on his brain, causing the hay fever-like symptoms.

Jake died on April 26 and his mother says his funeral was exactly as he planned

“Jake was very sporty, a big fan of car racing and loved anything in the water,” Lynsey said. “It was so sad to see him ill and missing out on his favourite activities.”

An MRI in November showed that the tumor had shrunk by 90 percent and that Jake’s lymph nodes were free of cancer. But a follow-up scan in March showed that although the tumor was gone, the cancer cells had spread to Jake’s spinal cord and the fluid around his brain.

Lynsey says: ‘His response was: ‘That’s fine, what treatment can I get now?’ The advisor had to explain that it could not be cured.’

The following week, Jake suffered a severe seizure caused by swelling in his brain.

“We had to make the decision to remove Jake’s ventilator and anesthesia if he did not respond within 48 hours,” his mother said. ‘But in true Jake style, he woke up the next day asking why we were crying.

“We took him home and Adam arranged for Jake to drive a Lotus supercar, which was a dream come true for him.

‘Sometimes I would wake up in the morning and find him climbing into bed with his big sister Ava. The bond he had with her was incredible; their close relationship helped him find normalcy.’

Lynsey was extremely impressed with how Jake handled his prognosis. She says, “One day I saw him creating a Word document with pictures of a light blue coffin and light blue flowers. He wanted his funeral to be a celebration, more of a party.

“When I talked to Jake about death, he told me he was sad that he didn’t get to live his life, but he believed it would be a lot harder for us than it was for him.”

Jake died on April 26, and his mother says his funeral was exactly how he planned it: “After the celebrant finished her speech, she said, ‘Who’s ready to party?’ and Happy by Pharrell Williams started playing. His friends walked the conga down the aisle to his coffin, stopping to high-five or tap him to say goodbye. I can’t think about the funeral without smiling, but we miss him so much.’