When Lynsey Swinscoe noticed her 13-year-old son Jake had a stuffy 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 it. But when Jake’s father Adam, 42, returned home a few weeks later, he noticed something strange.
“Adam is in the army,” says Lynsey, a Ministry of Defense official, “and when he saw Jake he noticed that the bridge of his nose looked swollen. Since I had been with Jake a long time, I hadn’t noticed. account of gradual change”.
Although neither parent was overly concerned, they made an appointment for Jake with his GP, who immediately sent him to the emergency room, where a CT scan revealed a growth inside his skull.
Jake Swinscoe, 13, with his older sister Ava in hospital. Jake was diagnosed with stage three alveolar rhabdomyosarcoma, an extremely rare and aggressive soft tissue cancer that primarily affects teenagers and young adults.
Before their deaths, Jake’s parents took him for a ride in a Lotus supercar – a dream come true for him.
“It was the size of an egg and was pressing on her brain, which was what caused the hay fever-like symptoms,” Lynsey says.
Suddenly, the family found themselves in the midst of a medical emergency that forced Jake to be transferred to the Piam Brown Unit at University Hospital Southampton, a specialist cancer centre.
Doctors gave him a devastating diagnosis: Jake had stage three alveolar rhabdomyosarcoma, an extremely rare and aggressive soft tissue cancer that primarily affects teenagers 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 says: “We were told Jake had a 20 per cent chance of surviving within five years, but he was very keen to continue with treatment and live his life. His counsellor said she’d never met a more determined boy.
ARMS can occur anywhere in the body and symptoms differ depending on where the tumor is located, its size, and whether it has spread.
Jake received nine cycles of chemotherapy and six weeks of proton beam therapy, a form of high-dose targeted radiation therapy.
A CT scan revealed a growth inside Jake’s skull that was the size of an egg and was pressing on his brain, which was causing the hay fever-like symptoms.
Jake died on April 26 and his mother says his funeral went just as she planned.
“Jake was a great sportsman, a big car racing fan and loved everything to do with water,” says Lynsey. “It was very sad to see him sick and not being able to do his favorite activities.”
In November, an MRI revealed that the tumor had shrunk by 90 percent and that Jake’s lymph nodes were cancer-free. But in March, a follow-up scan showed that although the tumor was gone, cancer cells had spread to Jake’s spinal cord and the fluid surrounding his brain.
Lynsey says: “His response was, ‘Okay, what treatment can I get now?’ The consultant had to explain that it was not something that could be cured.’
The following week, Jake suffered a major seizure due to inflammation in his brain.
“We had to make the decision to take Jake off the ventilator and sedation if he didn’t respond within 48 hours,” his mother says. “But, as has always been his way, he woke up the next day and asked us 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 would wake up in the morning and find him lying with his older sister, Ava. The bond he had with her was incredible; their close relationship helped him get back to normal.”
Lynsey was more than impressed with the way Jake dealt with his diagnosis. She says: ‘One day I found him creating a Word document with pictures of a pale blue coffin and pale blue flowers. He wanted his funeral to be a celebration, more like a party.
“When I talked to Jake about death, he told me he was upset that he didn’t get a chance to live his life, but he thought it would be a lot harder for us than it would be for him.”
Jake died on April 26, and his mother says his funeral went just as planned: “After the celebrant finished his speech, he said, ‘Now, who’s ready to party?’ and Pharrell Williams’ Happy started playing. His friends played the conga line down the aisle to his casket, stopping to high-five or play goodbye. I can’t think of the funeral without smiling, but we miss him so much.”
