A 13-year-old boy has died from a rare form of cancer that his parents initially mistook for hay fever.
Jake Swinscoe suffered from a “stuffy nose and watery eyes” – common symptoms of seasonal allergies – so his mother, Lynsey, offered him antihistamines.
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But the teenager was later diagnosed with stage 3 alveolar rhabdomyosarcoma – a soft tissue cancer that mainly affects teenagers and young adults.
Jake began receiving intensive chemotherapy, followed by proton beam therapy, which successfully shrunk the tumor.
However, another scan showed that the cancer had spread to the spinal cord and fluid around the brain.
After that, he accepted his fate with incredible courage, according to his mother.
The 41-year-old, from Wiltshire: “When Jake discovered there was nothing more the doctors could do, he coped amazingly.
“He chose not to have any further treatment – and his consultant said he was the first teenager to say so.
“I even caught him planning his own funeral. I’m very proud of him.
“If I were in his shoes, I don’t think I would have handled it as calmly as he did.”
In June 2023, Lynsey, who works for the Ministry of Defense as a civil servant, noticed that Jake was battling what she thought was hay fever.
“His symptoms were quite subtle,” she said.
“He had a stuffy nose and watery eyes and as it was summer I assumed it was hay fever.
“He hadn’t suffered from it before, so I gave him antihistamines, which helped.”
Lynsey wasn’t worried until Jake’s father, Adam Swinscoe, 42, from whom she is separated, returned from army work in August.
“Adam is a non-commissioned officer and when he saw Jake after three weeks away he noticed the tip of his nose looked a little swollen,” she said.
“Because I was with Jake a lot, I didn’t notice the gradual change – especially since he was fine with himself.”
Adam took his son to his family doctor, who sent him straight to the emergency room.
At Salisbury Hospital, a CT scan concluded that Jake had a mass inside his skull.
Nothing prepares you for surviving a child
Lynsey Swinscoe
“It was 6cm x 4cm (2.4in x 1.6in) – the size of an egg – and was pressing on his brain, which was causing the hayfever-like symptoms,” Lynsey said.
“Later, Jake remembered that on a school trip in July, he sneezed and felt a strange pressure change in his head, which would have been because of the dough.
“This was causing swelling in the nose and was behind the nasal congestion.”
Jake was transferred by ambulance to the Piam Brown Unit at University Hospital Southampton, where he remained for two weeks for further tests.
Due to its location, the mass could not be surgically removed, so Jake had emergency chemotherapy.
The tests led to the diagnosis of stage 3 alveolar rhabdomyosarcoma, an extremely rare and aggressive cancer that spread quickly to the lymph nodes.
‘HE JUST WANTED TO LIVE HIS LIFE’
“We were told that Jake had a 20 percent chance of surviving the next five years and he was very interested in continuing treatment,” his mother said.
“He just wanted to live his life.
“His consultant said she had never met a child so determined and so willing to receive treatment.
“He had his bag packed and was ready to go every time.”
Alveolar rhabdomyosarcoma (ARMS) can occur anywhere in the body, and symptoms depend on where the tumor is, its size, and whether it has spread to other areas of the body.
Jake, who was a sea cadet, began nine cycles of intensive chemotherapy, which caused him to lose his hair.
He then spent six weeks at UCLH to receive proton beam therapy.
In addition to treatment, Jake had several hospitalizations for infections and blood transfusions.
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What is alveolar rhabdomyosarcoma?
Alveolar rhabdomyosarcoma is a soft tissue sarcoma, usually found in adolescents and young adults, that can occur anywhere on the body.
It is often found on the arms and legs, but also in the head and neck region, in the muscles around the spine and in the area between the genitals and the anus.
An average of 31 cases of ARMS are diagnosed in England every year and the main symptom is an injury or swelling to the body’s soft tissues.
Other symptoms depend on size and location but may include:
- Hearing loss
- Loss of balance
- Bulging of the eyes
- Weakness, numbness or pain in the face
- Difficulty swallowing
- Back pain
- Difficulty walking
- Loss of bowel or bladder control
- Cold
- Abdominal pain, bloating or bloating
- Blood in pee or poop
Treatment may involve surgery to remove the tumor, radiotherapy and chemotherapy.
Source: Sarcoma UK
“Jake was very sporty, a big fan of driving race cars and loved everything on the water, like kayaking and sailing,” said Lynsey.
“It was very sad to see him ill and missing out on his favorite activities, but he was determined to get better.”
A routine MRI was scheduled for November 2023 and the results were exactly what the family hoped for.
“The scan showed that the tumor had shrunk by 90% and that Jake’s lymph nodes were free of cancer,” Lynsey said.
“We were all thrilled that he responded so well to the treatment.
“Adam and I feel very positive, like our son could actually survive this aggressive cancer.”
But in March 2024, another scan showed that although Jake’s tumor was gone, the cancer had spread to his spinal cord and the fluid around his brain.
“We were all devastated,” his mother said.
“The plan was for Jake to have maintenance chemotherapy so he could go back to school and resume a normal life, but it didn’t happen that way.
“Jake’s response was, ‘Okay, what treatment can I have now?’, so the consultant had to explain that it wasn’t something that could be cured.”
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The following week, Jake suffered a severe seizure due to swelling in his brain and was sedated to keep him stable.
“We had to make the decision to remove Jake from the ventilator and sedation if he was unresponsive within 48 hours,” Lynsey said.
“But in true Jake fashion, he woke up the next day asking why we were all crying.
“We took him home and Adam arranged for Jake to drive around in a Lotus supercar, which was a dream come true for him.
“Jake also really wanted to see his sister Ava fish because she hated fishing. Luckily she caught one, which made his day.”
She added: “Sometimes I would wake up in the morning and find he had climbed into Ava’s bed.
“The bond he had with his older sister was incredible, they were best friends and their close relationship helped give him normalcy.”
Lynsey was very impressed with how Jake handled his prognosis – and how he was planning his funeral.
THE PERFECT ENDING
“One day I caught Jake creating a Word document with pictures – a light blue coffin and light blue flowers,” Lynsey said.
“He told me he wanted everyone to wear light blue to his funeral and that he wanted it to be a celebration, more like a party.”
In April 2024, three weeks after Jake recovered from sedation, he took a turn for the worse.
“We were at a restaurant when he told me he didn’t feel well, so we went home,” Lynsey said.
“From then on, his health deteriorated and 11 days later he died.
“Nothing prepares you for surviving a child. When I spoke to Jake about death, he told me that he was upset that he didn’t get the chance to live his life, but that he believed it would be much harder for us than it was for him. “
In May 2024, Lynsey said Jake’s funeral went exactly as he planned.
“After the celebrant gave her speech, she said, ‘Now who’s ready to party?’ and Happy by Pharrell Williams started playing,” she said.
“We all started dancing and his friends formed a line and played the conga down the aisle to the casket and back, stopping to hive-five or knock goodbye; I can’t think about the funeral without smiling.
“I’m so proud of Jake and the maturity he showed in accepting that there was nothing more the doctors could do.
“He had so much life to live and we miss him so much.”
Jake’s courage did not go unnoticed and his charity Little soldierswhich supports military children whose parents serve in the British Armed Forces, awarded him Soldier of the Month in recognition of his bravery.
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This story originally appeared on The-sun.com read the full story
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