A mum is urging parents to ‘trust your instincts’ after a tiny change to her son’s eye turned out to be a rare cancer which changed his whole face in just a week.
Jessica, 35, and Lee Neal, 38, noticed son Ted’s face swelled while they were on holiday.
They thought he had rubbed sand into his eye at the beach – but Jessica had a gut feeling something wasn’t right.
Tests revealed the infant had a cancerous tumour in one of his sinuses, 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.
Ted died on April 9 this year, aged 16 months old, but Jessica is glad she went into the hospital when she did, saying it gave her extra time with her boy.
Jessica, a product developer, from Calverton, Nottingham, 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.’
Despite gruelling treatments, Jessica says Ted ‘battled so hard and he was such a happy boy though it all.’
She added: ‘Sadly he lost his life when the cancer spread to his brain but we’ll have those eight months of memories forever.’
Jessica and Lee, a learning mentor, first became worried when they noticed Ted’s eye was misshapen while they enjoyed a family break in Wales.
‘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,’ explained Jessica.
‘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.’
They expected to be told that nothing was wrong, but doctors broke the news about Ted’s tumour.
Jessica said: ‘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.
‘They took out as much as they could,’ Jessica said. ‘He seemed to be doing really well.’
Explaining the procedure, the mum continued: ‘They had to lift off his face to take out the bones around his eye and on the right side of his nose.
‘We had him home ten days after which was amazing.’
Thankfully, Ted was able to spend Christmas at home with his brothers Ben, 16, and Charlie, 14, before further chemotherapy in the New Year.
It was around this time that his parents started to notice a lump on his forehead.
Jessica said: ‘I wasn’t really worried about it at first- I thought it was just a virus. But they couldn’t work out what it was.’
An ultrasound showed it was Ted’s brain pushing forward, due to a gap in his skull which had been removed during surgery.
‘He had to be rushed for emergency surgery to have a drain put in to relieve the pressure,’ Jessica said. ‘We were actually told he was cancer free at that point.’
However, he started to deteriorate and doctors scrabbled to work out why. A test in March revealed the cancer had spread to Ted’s brain and down his spinal cord.
Jessica said: ‘I was really shocked. We just weren’t expecting it. It was like a layer of sand had covered his brain.
‘They put a port in his brain for chemotherapy to make him comfortable but we were told there was nothing more that could be done.
‘It was devastating.’
Doctors stopped the chemotherapy and Ted passed away ten days later, which mum Jessica describes as ‘so sudden and horrific.’
She added: ‘Nothing prepares you for losing a child. But we’ve kept busy and set up a charity in his honour to help families with a seriously ill child or bereaved family have a peaceful getaway.
‘We’re doing a walk for Ted every year on the day he died to raise money.
‘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 peace of mind.’
Find out more about The Little Ted Foundation on the website.
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