A mum, who lost her son to cancer, has warned parents to 'trust your instincts after a tiny change to her son's eye turned out to be a rare cancer.
The tiny change to Ted's eye was first spotted by parents Jessica, 35, and Lee Neal, 38, when they were on holiday in Wales.
They thought he had rubbed sand into his eye at the beach - but there was something telling Jessica that something wasn't right so decided to follow her gut feeling and take Ted to the doctors, North Wales live reports.
After a number of tests were carried out, Jessica and Lee were told that Ted had a cancerous tumour in one of his sinuses.
The tumour was so rare it didn't even have a name until January 2022.
Within a week his face had completely changed and he was diagnosed with unspecified sarcoma, which has now been named as mesenchymal chondrosarcoma, in his ethmoid sinus and had chemotherapy and surgery.
Later, the cancer sadly spread to his brain and down his spinal cord and Ted died on April 9 2022, aged 16 months old.
His mum has spoken out and said that she is glad she trusted her instincts when she realised something wasn't right as I meant her and Lee were able to get eight more months with Ted.
Jessica said: "I’m so glad I trusted my instincts as I think we would have lost him sooner if I hadn’t. It gave us that eight months with him.
“His eye hadn’t swelled that much when I took him in but I just had a feeling and within a week his face had completely changed and we had the diagnosis. Suddenly he was started on chemotherapy and our lives had changed.
He battled so hard and he was such a happy boy through it all. Sadly he lost his life when the cancer spread to his brain but we’ll have those eight months of memories forever.”
Speaking about when they first saw the signs in Wales, she said: " "I couldn’t put my finger on what was different about it, it wasn’t inflamed or sore, but it was starting to look like it was protruding.
"Throughout the week it was gradually becoming more obvious and when I pointed it out to Lee and he could see it too. When we got home, we took him to the emergency department at Nottingham’s Queen’s Medical Centre, really hoping that we were overreacting.
"I was expecting them to tell us nothing was wrong - but they didn't.
"As parents it's the worst thing you could find out, and the unknown type of sarcoma is incredibly rare and so is where it was in Ted's body, so finding out it's not going to be easy to treat is the worst thing. There's no known treatment plan and there's no known process.”
Ted underwent six rounds of chemotherapy which shrunk the tumour and he had an operation at Great Ormond Street Hospital to remove most of it in December 2021.
Jessica said they took out as much as of the tumour as they could and even had to lift off his face to take out the bones around his eye and on the right side of his nose.
She added: "We had him home ten days after which was amazing."
Ted was able to spend Christmas at home with his mum dad and two brothers, Ben, 16, and Charlie, 14 but in the New Year New his parents spotted a lump on his forehead as he was going in for chemotherapy.
“I wasn’t really worried about it at first- I thought it was just a virus,” Jessica said. “But they couldn’t work out what it was.”
An ultrasound showed that his brain was being pushed forward due to a gap in his skull which had been removed during earlier surgery.
Despite being told that Ted was cancer free, he health was deteriorating rapidly and doctors couldn't understand why.
In March 2022 a test revealed the cancer had spread to his brain and down his spinal cord.
Doctors decided to stop the chemotherapy and Ted passed away ten days later on April 9 2022.
The news was so sudden and shocking to Jessica and Lee and she described how there is "nothing that can prepare you for that".
To honour their son's memory and keep busy they have set up a charity in his honour to help families with a seriously ill child or bereaved family have a peaceful getaway.
“I have so many happy memories from the last eight months Ted was with us - even though it was tough. I would urge anyone to trust their instincts if they think something is wrong. Even if it just gives you piece of mind.”
To find out more about The Little Ted Foundation visit www.thelittletedfoundation.org.
