Family’s high hopes for revolutionary therapy
A YOUNG boy who sometimes woke up feeling nauseous faced heartbreak when he found out it was the result of a cancerous brain tumour.
Ryan Office has recently returned from receiving proton beam therapy in Florida after being diagnosed with a very rare brain tumour.
The 11-year-old, from Blyth, Northumberland, was sent to hospital by an optician when he started experiencing double vision.
When a scan revealed he had a grade 3, “ping pong ball-sized” tumour in his brain, doctors were stunned that Ryan hadn’t been suffering headaches or dizziness.
But his symptoms were so vague that even his mum, a paramedic, had no idea there was something so serious wrong with her son.
The only clue in the months leading up to the diagnosis was that he had sometimes woken up feeling sick.
Now, as he faces an anxious wait to see if the treatment has worked, Ryan and his mum Elaine are pleading with parents to get their children’s eyes checked regularly, saying his condition could have been spotted sooner if he had been to an optician earlier.
Bede Academy pupil Ryan, described by his mum as “a chatterbox and a cheeky chap” had been a perfectly healthy young boy until the end of last year.
Elaine, 44, said: “He was waking up in the morning feeling sick.
“I kept him off school a couple of times and he did come through it, but it wasn’t happening all the time.”
But when Ryan started experiencing double vision, the family went to an optician who said he had swollen optic discs and referred him to Newcastle’s Royal Victoria Infirmary.
“I was just feeling dread at that point. When we walked into a room for the MRI results there were about five people in there,” Elaine said.
“I knew something was really wrong – you don’t walk into a room of five people for good news.
“They showed us the tumour on the screen and it looked massive, they were shocked he hadn’t had any headaches or dizziness.
“It turned out the reason he felt sick in the morning is because the pressure had gone up overnight, but once he got up and walked around, the fluid drained down his spinal cord so the feeling had gone by about 9.30am.”
On January 7 this year, Ryan underwent an operation to remove the tumour, and it was sent away for tests.
Elaine said: “The diagnosis was like getting hit by a bus but the worst bit was the waiting.”
Just under two weeks later the family received the horrific news that it was a high grade cancerous tumour known as an anaplastic pleomorphic xanthoastrocytoma.
“It’s very rare so they don’t know much about it,” Elaine said.
“But they do know that it doesn’t normally react to chemotherapy and that 75% of the time, they come back,
“That was another bit of devastating news, because we’ve had treatment but this might not be the end of it.”
Elaine was told the best option was proton beam therapy, but there were only three places in the world where it could be provided through the NHS – one in Manchester, one in Germany, and one in Florida, USA.
With the Manchester centre massively oversubscribed, on February 18 the family flew out to Jacksonville, Florida, where Ryan spent two months receiving treatment, returning on April 19.
Elaine said: “He hasn’t had any side effects other than hair loss, but it’s another agonising time now to find out if it’s had any effect.
“He’s doing very well though, I can’t believe how brave he’s been.”
Ryan and Elaine now want to raise awareness of his symptoms in a bid to stop any other families going through the same ordeal.
She said: “My message to parents is to get your kids’ eyes checked on a regular basis. I started off getting my kids’ eyes tested but then there was always something else. This might have been spotted sooner if he had been checked more regularly.”
Elaine and Ryan’s 13-year-old brother Lewis are intending to run the Children’s Cancer Run in September to raise money for Children’s Cancer Research. To support them and donate follow this shortcut online: tinyurl. com/yct7o9uh