Our son is dying after his ‘lazy eye’ was actually terminal brain cancer – but we haven’t told him
WHEN Charlie Stephenson’s parents noticed he had a “lazy eye”, they thought he needed glasses.
But the true diagnosis left Tony and Soeli shell-shocked.
Their nine-year-old son was diagnosed with a terminal brain tumour.
Charlie’s brain tumour is inoperable and doctors have warned he could have just nine months to live.
In that time it is likely to rob the youngster of his eyesight and his ability to communicate.
Charlie was diagnosed diffuse intrinsic pontine glioma, which is a very aggressive tumour that’s located at the base of the brain.
Dad Tony, 44, from Martham, Norfolk, said: “We never thought a lazy eye would turn out to be something so devastating.
“They think he will have six good months and the last three months the tumour will rob him of his eyesight, his ability to communicate, to feed himself, and affect his breathing and heart rate.
“He could effectively have locked-in syndrome, which is a hideous way to go for anyone – let alone a nine-year-old boy.
“We’ve told him he’s got cancer but he’s not fully aware of what cancer is.
“We haven’t told him he’s going to die because he would just give up.
“He’s asked us that question and we’ve explained that people do die from cancer. We’ve tried to be as truthful as we can.
“It’s heartbreaking to hear your child ask that question.”
Truck driver, Tony said the family are now trying to raise £125,000 for treatment to help prolong Charlie’s life, giving them more time to make happy memories.
He said their worlds were turned upside down at Charlie’s diagnosis.
“Life was grand then in less than ten minutes our lives crumbled,” he said.
“I feel empty. A lot of things don’t feel worth doing but I’m just trying to do all I can for him, and put everything into giving him what he asks for.
We haven’t told him he’s going to die because he would just give up
Dad, Tony Stephenson
“I can’t even think about a point when he won’t be here.”
Tony and his wife Soeli, 41, and a carer, have both given up their jobs to look after Charlie.
They first spotted something was wrong earlier this year, when their son’s left eye began to turn inwards.
Thinking he would need corrective glasses, two weeks after noticing it they took him to the GP.
He was referred to the paediatric ward at the James Paget Hospital in Great Yarmouth straight away.
But while waiting for his appointment, three days later Charlie was rushed to A&E after he began to suffer double vision.
A CT scan uncovered a shadow on the back of his brain and he was transferred to Addenbrookes Hospital in Cambridge.
It was there that an MRI scan revealed Charlie had a tumour, on February 12.
“The first word the consultant said was, ‘sorry’,” Tony said.
“We were told it was inoperable brain cancer and the survival rate was zero.
“The phrase they used was ‘dumb luck’.
“There’s nothing genetic or environmental that could have affected it.”
Signs to watch out for in your child...
DIFFUSE intrinsic pontine glioma (DIPG) are one of the more common and aggressive brain tumours in kids.
They start in a part of the brain – the brainstem – called the pons.
It’s deep inside the lower part of the brain, which is why they can be so deadly.
It’s the part of the brain that’s responsible for critcal bodily functions like breathing, sleeping and blood pressure.
Experts don’t know the cause of DIPG, which can be hard for parents to accept.
Signs and symptoms include:
- abornmal alignment of the eyes, or double vision
- weakness of facial muscles, or facial asymmetry
- arm and leg weakness
- unstable balance and co-ordination
- difficulties walking and speaking
To find out more visit The Brain Tumour Charity.
Tony said they have been going through photos of Charlie to check if they missed anything.
But doctors have told the couple there were no other signs.
They told Tony and Soeli that without radiotherapy Charlie had a maximum of six months to love.
With palliative radiotherapy they now hope the nine-year-old will have nine to 12 months.
“There’s no guarantee,” Tony added.
Charlie has had 13 sessions of radiotherapy over three weeks and is now on a course of steroids to try and ease his symptoms.
He is now suffering slurred speech and struggles to walk.
Tony said they are hoping to raise money to give Charlie a procedure called convention enhanced delivery, which delivers chemo directly to the tumour, but is not available on the NHS.
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While they know it’s not a cure, they hope it could give them longer together and help give Charlie a “better death”.
“It’s amazing how resilient he is,” Tony said. “He tries to keep a smile on his face.
To donate to help Charlie, visit his JustGiving page here.
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