As I was cooking dinner, my son Jude played Minecraft with his friends in the front room. Frowning, I heard him shouting, ‘No! Do it this way!’ Next minute, his friends all trooped out and Jude stomped to his room to cry his heart out.
This had become common over the past few months. My once laid-back,fun-loving nine year old, who was obsessed with trains and could reel off the names of stations, from our station at Paignton, Devon, to Edinburgh, had become increasingly moody. He flew off the handle at the littlest thing.
The nightmare started in 2010 when Jude was six. He woke up one morning slurring his speech and his eyes and head were stuck rigid to the left side, his hands curled up to his chest. An ambulance took us to A&E at Torbay Hospital. There, Jude had a seizure.
After a scan, we were told he had a small ‘mass’ on his brain. They weren’t sure what it was and said they’d monitor it. Jude was put on epilepsy medication. A month later, he was rushed to hospital again with another epilepsy-related seizure when he contracted E.coli on a farm trip and couldn’t take his medication.
Over the next few years, he had episodes of tiredness, sickness and headaches, and a funny taste in his mouth, which were put down to reflux. Often I’d have to pick him up early from school because he was being sick and falling asleep in lessons.
One boiling hot day in the summer holidays, I was at home with Jude and my husband Cass was at work.
“I feel sick, Mummy,” Jude said. This was common, but then he started saying odd things like wanting a fork for his soup. All of a sudden he went into violent convulsions. Trembling, I dialled 999. The fit was so severe the paramedics worked on him for half an hour at home, pumping him full of drugs, trying to stabilise him just to get him in the ambulance.
On the way to hospital, they carried on working on him. I just sat there, terrified I was watching my son dying. Cass met me at the hospital. Jude’s seizure carried on for another five hours before anti-convulsion drugs worked. We nearly lost him. When he came round, in the high-dependency unit, his eyes widened in fear as he screamed that there were giant black spiders coming out of the wall.
“Mummy, help me!” he sobbed. But when I tried to cuddle him, he became even more agitated. “Go away!” he shouted. “You’re not my mum. Where’s my mum?”And he was convinced the nurses were trying to kill him. Hallucinations can occur in severe cases of epilepsy, but I became worried the cause of the epilepsy itself could be down to something more sinister.
CT and MRI scans followed, and then came the devastating news: “Your child has a brain tumour.”
That mass on Jude’s brain had been a tumour, but incredibly, doctors didn’t link up his symptoms.
I was shocked and angry it had taken over three years to diagnose. But at the same time I was relieved we could start treatment to bring my boy back. When they said it was operable and most likely to be benign, I felt a huge sense of relief. I just wanted it out of him, but it wasn’t imminently life-threatening and doctors had to weigh up the risks of surgery. We went home to wait.
As the weeks went on, Jude became frightened to go out. He didn’t want to go to the beach and wasn’t even interested in trains any more. It was like someone had taken away my boy and replaced him with a stranger. He was a shell of his former self. His moods became blacker.
Then one day, Jude said he wanted to go to America. I was delighted he wanted to do something; I thought he meant Disney World. But he didn’t have fun Mickey Mouse in mind.
“Don’t they have guns over there, Mummy?” he asked. “I can buy a gun and kill myself.”
I felt sick. No mother should hear her nine-year-old son saying he wants to kill himself. He should have been a carefree child, not one consumed with suicidal thoughts.
He kept saying he didn’t see the point of being here and I was terrified he’d try to jump in front of a train. I watched him like a hawk and he started seeing a psychologist. All the while I was desperate for him to have the tumour removed, convinced that was what was causing the change in my little boy’s character.
Our life was on hold until we got an answer. Doctors finally decided to operate and on 16 December 2013, Jude had his surgery. I went down to theatre with him as he clutched his teddy bear, Moo.
“You’re going to have a nice sleep now,” I said, plastering on a brave smile for his sake.
His seven-hour operation felt like an eternity. Cass and I were too worried sick to talk and just sat in silence. Any brain surgery comes with big risks, but I repeated my mantra: “Please let my boy be all right” while I waited.
Thank God the operation was a success and they managed to remove the entire tumour. Afterwards, to test his memory and speech hadn’t been affected, he reeled off the names of his beloved train stations! I couldn’t believe the instant change.
Biopsy results revealed Jude’s tumour was in the amygdala area of his brain, which controls emotional responses – especially fear. A tumour pressing on that area can hugely affect mental health and can cause depression.
A warning to others
Jude came home two days before Christmas, very tired and on strong painkillers. But soon his zest for life and laughter was back. How I’d missed that sound. When he was better he asked me to take him to the beach. As he sat there joking and licking his ice cream, I thought, “My Jude’s back.”
Although he still has a few problems with writing and reading people’s emotions, I count my blessings. Once the tumour was removed, his seizures stopped completely and he’s no longer on any medication. He has to have a scan once a year into adulthood to check everything is still OK.
Now we are backing The Brain Tumour Charity’s HeadSmart campaign, because we are passionate about helping to raise awareness of symptoms. We know from our experience with Jude how crucial it is for doctors and parents to recognise when a child may have a brain tumour.
I just wish I’d known about HeadSmart when my son was suffering symptoms, then we might not have had an agonising three years to get Jude’s diagnosis. I want to save other families going through the same nightmare.
The most typical symptoms of brain tumours in children and young people include…
● Persistent or recurring vomiting
● Persistent or recurring headaches
● Balance/co-ordination problems/walking problems
● Blurred or double vision
● Abnormal eye movements
● Abnormal head position
● Fits or seizures
● Behavioural changes, especially tiredness
● Increasing head circumference in babies
● Delayed puberty in teenagers
● Symptoms vary across age groups, for more information, visit Headsmart.org.uk
March is Brain Tumour Awareness Month. HeadSmart (Headsmart.org.uk) is a UK-wide campaign run by The Brain Tumour Charity(Thebraintumourcharity.org) to raise awareness of the signs and symptoms of childhood brain tumours.