A nurse who booked her teenage son an eye test after noticing him squinting has praised the optician who sent him straight to A&E – where doctors found a potentially deadly malignant brain tumour.
In the run-up to the shocking diagnosis, Sophie Huggett, 48, says her son Daniel, 13, had lost interest in reading – a hobby he loves – and could not remember what he had been taught in online classes, making her think he was not paying attention.
But when the optician took action after spotting his swollen optic nerves, Sophie, now a stay-at-home mum, was devastated when doctors discovered a massive spinal fluid build-up inside his skull and a “jagged, tree-like” 4cm
tumour wrapped around his brain stem.
Sophie, of Stonecross, Eastbourne, East Sussex, who also has a younger son, Matthew, 12, with her business manager husband, Andrew, 52, said: “If I hadn’t taken him to see the optician when I did the surgeon said Daniel wouldn’t be here now.
“We have a lot to thank the optician for.”
Daniel first started having strange symptoms, like unsteadiness on his feet and shaky hands, in the summer of 2020 – around the same time as he was prescribed tablets by his doctor for migraine-style headaches.
But, as he played down his health problems, his parents did not realise the full magnitude of what was happening.
Sophie said: “He was always laughing it off, so I didn’t really think about it.”
His parents were more concerned by his sudden lack of interest in reading, as while he had previously devoured books by JK Rowling and Tolkien, he suddenly lost all interest in these fictional worlds at around the same time.
“He’s a bright young man and I thought it was odd because he always really loved reading,” Sophie recalled.
“He would lie in bed at night reading and come down and tell us all what had happened in the book in the morning.
“But, from about December, when I asked him he’d say, ‘I’m having trouble remembering what happened at the beginning.'”
She added: “After that, he lost interest in things more and more. He couldn’t remember his history lessons from the previous week.
“I feel bad now because I told him off for not paying attention.”
It was not until after Christmas, when Sophie realised Daniel was squinting at the screen during his online lessons, that she booked him in for a check-up with the optician.
Checked over at Hailsham Specsavers on February 1, 2021, the optician asked whether he had recently had a head injury.
“Being medically trained, that was the moment my blood ran cold,” said Sophie.
The optician had found Daniel’s optic nerve behind both eyes to be “completely” swollen and advised his worried mum to take him straight to A&E at Eastbourne District General Hospital – even writing an urgent letter for Sophie to hand in at the A&E desk, and sharing his personal mobile phone number in case they were not seen immediately.
A CT scan at the hospital revealed a large lump “right in the centre of his brain,” after which he was blue-lighted to London’s more specialist King’s College Hospital.
“Daniel and I didn’t want to shut the ambulance door and drive off when we said goodbye to his dad and brother, as we were all crying so much,” Sophie said.
An MRI scan revealed Daniel had severe hydrocephalus – a build-up of spinal fluid on the brain – as the growth was blocking the liquid’s drainage path.
He needed immediate surgery.
“It was a ground-breaking operation,” Sophie said. “The surgeon made a channel within his brain anatomy, rather than using an external shunt.”
It took 12 hours in surgery for doctors to also remove enough of the tumour – as it had become so solid and was so hidden away deep within Daniel’s brain – to sample for a biopsy, to reveal if it was cancerous.
Sadly, five days after the operation, his family were told he had a rare, large pineal germ cell brain tumour – these, as in Daniel’s case, are normally malignant – which had adhered to his brain stem.
Beginning chemotherapy at the Royal Marsden Hospital in Sutton, Surrey, just two weeks after surgery, the cytotoxic drugs made him “extremely ill” – causing vomiting and painful mouth ulcers. requiring morphine to kill the pain.
After two cycles, the tumour had not shrunk, so, on April 29, Daniel was admitted to King’s for a 10-hour operation to remove it.
“We were devastated,” said Sophie. “We’ve been very honest with him, but I couldn’t tell Daniel that all that pain and suffering was for nothing.”
She added: “We always knew he would have to have further surgery to remove the tumour, but had hoped the chemotherapy would shrink the lump, so it was much smaller.”
Further horrors lay ahead, with surgeons discovering that the 4.5cm by 2cm tumour had “calcified like bone” and infiltrated his brain stem, making it one of the most complex cases in the chief medic’s 30-year career, according to Sophie.
She said: “What hadn’t shown up on the MRI was that it was like tree branches. It was jagged and caused trauma when they took it out.”
She added: “They nearly didn’t operate but decided they would have to, to try and save Daniel’s life.
“Two world-renowned surgeons had to carefully peel it away from his brain stem to take it out whole. We had sleepless nights worrying about how much of Daniel we would get back afterwards.”
The poor boy even suffered seizures on the operating table – which culminated in the onset of a dystonic storm, or uncontrolled and painful muscular spasms -and persisted after the operation when he was in intensive care, which Sophie had to watch helplessly.
“It was the most awful thing that any parent could ever witness,” Sophie said. “His temperature was up and his muscles were rigid, with his wrists twisted at such an awful angle.”
Then, after another emergency six-hour operation on May 11, due to spinal fluid building up on his brain again, the dystonia, or muscle spasms, became so bad that three days later doctors placed him in an induced coma, to improve his chances of recovery.
Sophie said: “A doctor ran in and drew fluid off his brain in the hospital room with a needle – filling six specimen bottles with spinal fluid via a catheter while I was stood there watching.”
She added: “I was in total panic and hysterics, as his bed was wheeled away again for emergency surgery. It was awful.”
While Daniel lay in an induced coma for 21 days, doctors also monitored his intracranial pressure by inserting a 4-inch needle into his head to measure the pressure in his skull.
Sophie said: “I felt really impotent. At one point during this nightmare, he developed sepsis – a potentially deadly reaction to infection – and he had a chest infection.”
Brought out of his coma at the beginning of June, he was transferred to the neurological rehab ward at King’s at the end of the month.
Yet more bad news followed when Daniel’s oncologist told the family the same month that his cancer had spread to the base of his spine.
Fortunately, he was eligible for pioneering proton beam therapy – a course of radiotherapy that does not kill the surrounding cells – at specialist cancer centre The Christie Hospital in Manchester.
He will begin a six week treatment course when he has fully recovered from brain surgery later this year.
Sophie said: “The news about his cancer spreading came right when everybody had started to breathe a sigh of relief – as he was moved to rehab.
“He is exceedingly lucky to get this through the NHS, as there are really tight criteria. Daniel is on a ‘cure pathway’ so we fully expect him to recover, but it will be a long one.”
Sophie’s focus is now on ensuring that Daniel is as fit as possible in time for his proton beam therapy.
She said: “He can’t move his legs yet. He can’t hold a cup and he’s still tube-fed. Before he can come home, he needs to be able to eat and drink, to walk, bear his own weight and use the toilet.
“To be able to talk would be nice, too. He can now almost manage to say ‘I love you,’ which is a really amazing milestone – but he’s terrified he’s not going to be Daniel again.”
She added: “It is his birthday on September 13 and he is desperate to be home by then. He was 5ft 10in tall when he went into hospital and will be at least 5ft 11in when he leaves – as he’s been in there for so long.
“Everyone keeps saying, ‘It’s going to take time.’ The word ‘time’ is driving me crazy!
“But, as a qualified nurse, I know we can do this together. It’s just going to be a long, tough road.”
The family are now using GoFundMe to raise money to adapt their house, so Daniel can, hopefully, continue his recovery at home.
And Sophie, who is writing a blog about his progress, said: “His rehab is going to be such a long and difficult journey, but I want him here to do it with me at home – to sleep in his own bed and cuddle up with his dogs, cockapoos Bella, six, and Angel, two, who miss him so much and probably think he’s never coming back.”
* To read about Daniel’s journey on Sophie’s blog at www.danielsfuture.co.uk and, to make a donation, visit: www.gofundme.com/f/help-daniel-recover-from-a-large-brain-tumour