Flintshire family dealt a further devastating blow after five-year-old son suffers brain tumour relapse

A Flintshire family has revealed that their five-year-old son who was diagnosed with a brain tumour during the 2020 lockdown has had a recurrence of the disease.

Aaron Wharton recently suffered a relapse of an anaplastic ependymoma brain tumour.

In April 2020, Aaron who was four years old at the time, was diagnosed with a rare, aggressive form of brain cancer, just as the UK was coming to terms with a national lockdown caused by the COVID-19 pandemic.

Since then, brave Aaron has undergone brain surgery, radiotherapy and has had a gastrostomy feeding tube fitted.

Aaron seemed to be recovering well but, in June 2021, his routine MRI scan revealed a new, large tumour growing in the same place as the original one.

His mum Nicola said: “This came as a massive shock, as there wasn’t anything physically to make us believe that anything was wrong.

Aaron was thriving at school, and was pretty much back to how he was before diagnosis. He was just amazing, having fun as any normal five-year-old boy would.”

Doctors said Aaron’s cancer type was more aggressive than initially thought due to how quickly it had returned after treatment.

On 17 June, Aaron underwent surgery at Alder Hey Children’s Hospital in Liverpool.

The tumour was more complex than the first, growing into spaces left from previous surgery.

After 11 hours, it seemed that the operation had been successful, and the tumour had been removed.

Aaron stayed in hospital for five weeks following surgery.

He had problems with speaking and swallowing, and he has to feed through a gastrostomy feeding tube through his stomach.

Fluid had also built up on his head, so his wound needed to be re-opened in order to fit a temporary drain.

Before leaving hospital, Aaron had another MRI scan which raised concerns.

The scan was repeated four weeks later, confirming that a new tumour had grown significantly in a month.

On 26 August, Aaron successfully underwent further surgery at Alder Hey, with the whole tumour being removed.

The previous tumour that had been removed in June was sent away for testing.

It was categorised into ‘A Group’, the worst prognosis.

It also tested positive for a gain of 1q, a gene variation marker causing aggressive mutation.

Nicola said: “This puts Aaron’s chances of cure below 5%. We’re absolutely broken. To think that someone so small could go through what Aaron’s endured, is inconceivable.”

 “I also struggle to comprehend why there isn’t more funding into brain tumour research, especially when you consider that the disease kills more children and adults under the age of 40 than any other cancer. ”

“I am committed to helping to raise awareness of the issues surrounding brain tumours, having first-hand experience of the devastation they cause.”

“They can’t even tell us how long we have with him because it’s so unpredictable. ”

“It’s just a really difficult thing to listen to and try to take in and then make sense of it all.”

“At the same time, you try to be strong for Aaron and not show that you’re upset or you’re worried.”

 “We just need to take each day as it comes. We’ll just try and do as much as we can do as a family and just try and carry on as normal.”

“We just want him to have as much fun as he can while he’s well enough to. We’ll just treat him to anything and everything that he wants. Whatever he wants to do, we’ll do.”

 “He loves going to the zoo, so we’ll definitely be having a lot of zoo visits. And he loves Lego, so we’ll try and organize a trip to Legoland. Anything that puts a smile on his face is what we’ll do.”

The devastating update comes as his family works with the charity Brain Tumour Research to share their story of heartbreak this month, which is Childhood Cancer Awareness Month (CCAM).

Joe Woollcott, community development manager at Brain Tumour Research said: “In sharing Aaron’s powerful story, the Wharton family is highlighting the devastation of a childhood brain tumour diagnosis. To hear that a young person has been diagnosed with brain cancer is shattering.

“Hope lies in the research taking place at the Brain Tumour Research Centres of Excellence, which will help us get closer to a cure.”

“But while the money continues to come in from campaigners and fundraisers, it comes from the British public, and we need more commitment from the Government and larger cancer charities, to help fund the discovery science that will deliver the innovations we need in our area.”

“It is only through working in a joined up, thought-through manner that we can achieve the outcome we so desperately need.”

According to Brain Tumour Research, more children are killed by brain tumours than any other type of cancer.

Their research shows that:

• Brain tumours kill more children than leukaemia
• One in three children who die of cancer are killed by a brain tumour
• Diffuse intrinsic pontine glioma (DIPG) is the deadliest form of childhood cancer with a median overall survival of between eight and 12 months
• Medulloblastoma is the most common type of high-grade paediatric brain tumour and occurs more often in boys than in girls
• Brain tumours kill more children and adults under the age of 40 yet, historically, they’ve received just 1% of the national spend on cancer research

To find out more about our Childhood Cancer Awareness Month activities, including how you can donate and help Brain Tumour Research get closer to a cure please visit: Childhood Cancer Awareness Month (braintumourresearch.org).