Family’s world turned upside down by brain tumour diagnosis

A family’s world was turned upside down after the devastating news of a two-year-old’s brain tumour diagnosis.

Arthur Middleton and his family were living near Grantham when he was diagnosed with a rare grade one ganglioglioma/astrocytoma “tennis ball sized” brain tumour in July 2017.

He was transferred to Addenbrookes Hospital in Cambridge for his surgery and subsequent oncology care until the family moved to America for his father’s work in January 2018, where he continues to receive treatment.

Arthur has now undergone two surgeries, but his grade one tumour is stubborn and unusually agressive and has regrown after both operations.

He is currently almost five months into chemotherapy with a further 10 months ahead of him and faces the prospect of needing additional treatments in the future.

Arthur Middleton and his family. Photo: HeadSmart

Arthur’s mother Claire said: “Never in a million years did a brain tumour cross my mind as the reason behind our two-year-old son’s symptoms. His first seizure was 11 weeks before his tennis ball sized brain tumour was discovered.

“We spent almost three months with him being treated for epilepsy and it being assumed that his seizures were related to his prematurity, having been born at 26 weeks.

“His vomiting and nausea was increasing, especially in the mornings, and his seizures were not being controlled by the medication.

“It was so heartbreaking to see our little boy go from ‘happy go lucky’ to so lethargic and unhappy.

“He amazes and inspires us every day and tackles every challenge he faces with such strength of character.”

Claire is backing brain tumour symptom awareness campaign HeadSmart, which is run as a partnership between The Brain Tumour Charity, The Children’s Brain Tumour Research Centre and the Royal College of Paediatrics and Child Health.

The campaign has managed to reduce the average diagnosis time from over 13 weeks to just six and a half weeks and continues to increase awareness among GPs and healthcare professionals to improve the situation further.

Arthur out in the snow. Photo: HeadSmart

Claire added: “Looking back now, it is hard to believe just how poorly he was. The final straw came when we noticed he very clearly had stopped using his right arm/hand, but still we never thought of a brain tumour being the cause of all of this.

“At this point we fought for an MRI scan at Peterborough Hospital earlier than our original appointment (which would have been 15 weeks after his first seizure) and were shattered when they delivered the news.

“I wish we had seen the HeadSmart campaign earlier. In retrospect, and now knowing the signs, it was so obvious – Arthur was having seizures, nausea/vomiting, loss of balance, unexplained falls and slurred speech. We do wonder whether an earlier diagnosis might have prevented the ongoing right sided weakness that he now has as a result of the tumour.”

Photo: HeadSmart

The Charity’s Chief Scientific Officer Dr David Jenkinson said: “Brain tumours are the biggest cancer killer of children in the UK.

“HeadSmart has two aims: to save lives and reduce long-term disability by bringing down childhood brain tumour diagnosis times.

“The campaign will help us to achieve that goal by alerting more healthcare professionals, parents and young people to the signs and symptoms of the disease.

“We are extremely grateful for the support from Claire and her family for sharing Arthur’s story and helping us raise awareness.”

Photo: HeadSmart