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- Joshua Nel was diagnosed with a rare type of brain cancer in 2018.
- Doctors said he had between six and 20 months to live if he didn’t undergo conventional treatment.
- He opted for alternative treatment and healing - his latest scan revealed his tumour is growing, but he continues to live a near-normal life.
There are more than 120 different types of brain cancer, and at the tender age of 14, Joshua Nel was diagnosed with one of the rarest ones.
During the days before he received his diagnosis, he had persistent headaches that progressively worsened. At times, he would also feel numb on the one side of his body, and, periodically, he would throw up.
"I thought he was coming down with the stomach flu, or that he was stressed because of exams, or that he wasn’t sleeping enough, or that he was dehydrated - you know, you tick off all those boxes," Vanessa, Joshua's mother, told Health24.
Grade IV pineoblastoma
Eventually, on 6 November 2018, just ahead of Joshua's Grade 8 end-of-year exams, an ophthalmologist confirmed that his optic nerve, which plays an important role in our ability to see, was badly swollen.
"He said he wanted Joshua to immediately go for an MRI at N1 City Hospital, and that they were already waiting for him," Vanessa said.
"We rushed to the hospital where they were waiting to take him in with a wheelchair."
Later that day, a neurologist diagnosed Joshua with a Grade IV pineoblastoma, an aggressive brain tumour.
The news sent Vanessa into a tailspin. She had one of two choices: "I could have either broken down in a flood of tears, or asked them, 'Now what?'" Fortunately, she chose the latter.
After two brain surgeries, Joshua was told that without chemotherapy and radiation treatment, he would likely live only another six months. But both Joshua and his mother decided to take an alternative approach.
"And guess what? I just dropped him off at school this morning," says Vanessa.
Two brain surgeries
Grade IV pineoblastoma is a cancer that grows quickly and tends to invade nearby tissue, and is more aggressive than other types of pineal gland tumours, according to St Jude's Children's Research Hospital in the US.
The tumour starts in the pineal gland, an organ located in the centre of the brain that produces a hormone called melatonin, which controls sleep.
In November 2018, Joshua underwent a surgery to divert the cerebral fluid that was blocking one of his ventricles. The operation was successful and alleviated the pressure behind the optic nerves.
But just two weeks later, he was back in theatre for a 10-hour operation to debulk the tumour. Those 10 hours were nerve-racking for Vanessa, who sat waiting, receiving an update only once the surgery was complete.
"Before Joshua went in, I had to sign a form [acknowledging] that there was a 20% chance that he would die on the table, or that he might not walk or talk again, or be a vegetable."
Deep down, however, Vanessa knew that her son, who was born at 28 weeks gestation, was a fighter and would make it out alive.
And he did.
'I want to help others with their mental health'
Unfortunately, the surgeon could only remove around 70% of the mass. Joshua goes for scans regularly, and at his last appointment in January, he was told that the tumour had grown.
"But he’s got no headaches, his posture is perfect, he’s got no trouble swallowing, and he is in the top 10 in his grade for English and Maths Literacy," says Vanessa.
Joshua stopped his schooling in 2019 to focus on his treatment and healing, but returned in 2020. He's currently completing grade 11. After high school, he aims to study psychology.
"I want to help others with their mental health. I feel like this is an area that is generally overlooked by people," he says.
Once a karate lover and an avid tennis player, he can no longer continue with lessons due to issues with depth perception. But he refuses to see himself as a victim, and despite going through deep waters, he never asks, "Why me?"
A message for parents of kids with rare cancers
It’s been a tough time for both mother and son, but they refuse to give up hope.
"Keep your mind strong - whatever faith you’ve got, hold onto it with everything you’ve got," is her message for other parents in a similar situation.
"It's like walking around every day with a loaded gun at the back of your head, and someone saying: 'I’ll pull the trigger. It may not be today, or tomorrow, but it could be next week,' and you walk around with that loaded gun. That’s what it’s like every single day. But you can’t ever give up. Find a reason to get up again," she says.
Childhood cancer on the increase
Studies show that childhood cancer is on the rise. For example, cases of paediatric cancer in the US alone surged by almost 50% from 1975 to 2015, The Guardian reported in 2019 - and Vanessa wants parents to be aware of this.
"Because it happens close to home when you least expect it, look at those bruises on your child, question that strange bump - just be aware," she says.
More importantly, Vanessa adds: "Be kind to yourself - because mothers aren't. We give everything, but occasionally we need to remember to be kind. For parents of a child with a new diagnosis, remember that this cancer didn’t just happen overnight; childhood cancer takes months, if not years to develop. So don't rush into something. Just take a step back, breathe, and be kind to yourself."
Joshua echoes similar thoughts: "No matter what happens, do not give up hope… And just love life."
May is Brain Cancer Awareness Month (also known as Brain Tumour Awareness Month). For more information on brain cancer, visit cansa.org.za
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