A mum who thought her ‘happy’ and ‘cheeky’ two-year-old son was becoming ‘clumsy’ soon discovered he was actually suffering from brain cancer.
Eve, from Western Australia, started noticing her ‘healthy’ toddler Charlie’s clumsiness but didn’t think much of it until he began saying ‘ouchy’ and grabbing his forehead.
She knew something was seriously wrong when he began vomiting multiple times a day, complaining persistently about headaches, and became very tired and irrational.
‘Being a nurse, I put it all together in my head and I knew it was something to do with his brain,’ Eve told FEMAIL.
However, Charlie’s symptoms were repeatedly dismissed.
‘I was turned away a few times from doctors, they told me he was fine, but I knew he wasn’t,’ she said.
Eve and her husband decided it was time to take him to Perth’s Children’s Hospital where, after just 30 minutes, a neurosurgeon delivered the shattering news: Charlie had a cancerous tumour on his brain.
‘My husband and I started crying, and I went to the bathroom to be sick. It was an indescribably horrific feeling. I felt like my heart was being torn apart,’ she said.
Eve was distraught when her then-two-year-old son Charlie was diagnosed with brain cancer
‘Despite my intuitions and my gut feeling being correct, I still couldn’t believe something like that could be happening to my little boy.’
Just a few days later, Charlie underwent surgery after doctors found a growth the size of a small apple on his brain.
Fortunately, 93 per cent of the tumour was successfully removed, with the remainder left to avoid permanent damage to surrounding areas.
The family had to wait a few weeks before their little boy was diagnosed with Group 4 medulloblastoma, a malignant brain tumour that develops from a type of nerve cell in the back of the brain.
Group 4 is a classification used to describe one of the four different molecular subgroups of a specific type of aggressive brain tumour found in children.
‘I had this deep feeling of dread, and it was like a second wave of despair, like it was happening all over again,’ Eve recalled.
‘I’d been clinging onto the hope that it would be benign, even though I knew that chance was incredibly small.’
Watching Charlie go through a major brain surgery and intense treatments was incredibly challenging for his helpless parents.
‘We felt selfish at times, knowing that we were putting him through hell, and he just felt the pain and sickness of it all instead, without knowing why,’ Eve said.
The mum said little Charlie was always a ‘happy, gentle, generous and a little cheeky’ boy
After a neurosurgeon delivered the news that Charlie had a tumour on his brain, he went in for major surgery just days later. Fortunately, 93 per cent of the tumour was able to be removed
‘It was incredibly hard watching what was once our happy, healthy child waste away in a hospital bed for nine months, and not knowing if it would even work.’
After nine months of chemotherapy, Charlie had six weeks of brain and spine radiation, requiring a general anaesthetic every day.
The mum said her now-five-year-old has had to overcome many challenges after his brain surgery, including learning how to walk, talk and swallow food again.
He now lives with lasting side-effects from his treatments, including hearing loss, speech difficulties, low concentration, trouble coordinating his movements and requires help getting dressed.
‘His brain has also been damaged by the radiation used to destroy the remaining tumour, so he will struggle cognitively for the rest of his life, and life will always be so much harder for him,’ Eve explained.
Unfortunately, Charlie is too young to grasp the gravity of what’s ahead for him.
‘He is unaware of any of this, so the burden falls on us as parents, and we have our good and bad days,’ Eve said.
‘We don’t focus on what he can’t do, we focus on what he can do, because every day he’s here is a blessing.’
Charlie enjoys going to daycare and playing with his baby brother Teddy
The mum said her now-five-year-old has had to overcome many challenges after his brain surgery, including learning how to walk, talk and swallow food again
Charlie, who’s now five years old, with his little brother Teddy, alongside his mum and dad
Despite his challenges, the mum said her little boy, who’s now a five-year-old kindergarten student, has been doing ‘incredible well’.
‘Physically he doesn’t look much different from the other kids his age at school. He’s more clumsy, and can’t move as fast as the other kids can, but he does so well to keep up with them,’ she explained.
‘He requires extra help in class because he has cognitive deficits, and he requires a lot of rest time during the day. These things will only increase as the effects of the radiation on his brain become more noticeable.
‘Charlie will be considered in remission at the five-year mark, so we have four years to go. His tumour type is very aggressive, and he has a high chance of relapse.’
In the meantime, Charlie will have MRI scans every three months.
‘So we are currently living scan to scan, hoping for the best,’ she said.
‘We get through life now being so grateful for all the special moments, all the memories we get to make as a family. We know that at any moment things could change, so we try not to sweat the surface level stuff.
‘Practicing gratitude gets us through the hard days, and makes us enjoy the good moments even more.’
Little boy was diagnosed with Group 4 medulloblastoma, a malignant brain tumor that develops from a type of nerve cell in the back of the brain
The mum said Charlie, who’s now a kindergarten student, has been doing ‘incredible well’
By sharing Charlie’s story, the mum hopes to raise awareness about childhood cancer and highlight the toll it takes on families.
‘It’s an area of medicine that needs constant funding and research so that we can have better treatment options for our kids. The treatment they receive was never intended to be used on children, but it’s the only option we have,’ Eve said.
To other parents with young kids going through cancer, the mum said: ‘Don’t be afraid to ask for help.
‘This is a hard one because we struggled every day,’ she explained.
‘There is so much support out there, and so many incredible people and organisations wanting to help, so just reach out where you can.
‘We found we needed it most after treatment had finished, when we needed to try and navigate our new life with all its challenges.
‘Having a child with cancer is like being thrust into a club you never wanted to be in, but gosh it’s an incredibly supportive club.’