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‘Eddie and the Magic Healing Stone’: helping children understand brain tumours

A candid, honest and humorous account of the experiences of a dad-of-one and junior doctor after he was diagnosed with the brain tumour which he lost his life to has been published.

Aria Nikjooy from Sale in Greater Manchester, was diagnosed with a cerebellar medulloblastoma brain tumour in November 2018 when he was just 27-years-old. At the time, he was working as a pediatric doctor at St Mary’s Hospital in Manchester and his son had just been born.

Aria had been having headaches which would often be so bad that they would bring him to his knees in pain, but he had originally put down to stress. He then started having problems with slurred speech. He visited his GP who referred him for a MRI scan. However, he decided to attend A&E the following day. A MRI scan, along with further tests, soon confirmed that Aria had a brain tumour.

He defied the odds by, after surgery and gruelling rounds of chemotherapy and radiotherapy, he returned to work just 12 months later. However, the tumour grew back three times in the midst of the Covid pandemic last year and, despite more surgery and treatment, Aria sadly passed away in February.

Aria had written a memoir detailing his experiences as he managed his diagnosis alongside his career and life as a hands-on dad. He wrote a children’s book - Eddie and the Magic Healing Stone – to help his son and other children to understand the difficult subject of parental illness in an age appropriate way. Proceeds from the book will also be donated to The Brain Tumour Charity.

This first book was just one part of the family’s continued fundraising to support The Brain Tumour Charity, Their activities has also included a bake sale and a fundraising walk by the children from his son’s nursery. So far, they have raised nearly £6,000 for the organisation.

Aria said: “My son was so young when I was diagnosed and, at the time, I was petrified of him seeing me in a hospital bed or maybe not even recognising me. However now, one of my biggest regrets is how my amazing wife had to look after him both day and night even though I know he was in the best possible hands.

Writing the book was very cathartic when I left hospital and it gave me something to focus on. It really rested on me to stop feeling sorry for myself and so I put my energies into something positive and tangible.

Aria

"It was easy to involve my son in the book because it was about silly characters and fantasy rather than anything too serious. The Twlight Walk is another lovely way for him to be involved yet in a positive and enjoyable way for him and his friends.

Aria’s second book, ‘Broken Brain: Brutally Honest, Brutally Me’ is aimed at an adult audience of patients, medical professionals, families or anyone who has been affected by a brain tumour.

The family hope that it will help to raise awareness of the disease as well as illustrate what it is like to be a patient by powerfully accounting Aria’s experiences at the other end of the stethoscope. Proceeds from the book will go to charities as well as the Royal Medical Foundation, Royal Medical Benevolent Fund, and Society for Assistance of Medical Families.

At the time of writing the book, Aria said: “As someone who is supposed to be looking after other people for a living, I struggled to take on the role of the patient instead. My one piece of advice is if you think you have a serious symptom then please speak to your doctor – don’t leave it like I did.

Aria had first heard about The Brain Tumour Charity through a Google search to find out more about his diagnosis. He and his family have been fundraising for the organisation to help raise awareness of the disease and also to fund research into a cure.

Aria added: "I think there needs to be much greater awareness of what the signs and symptoms are of brain tumours – in much the same way as there is for other types of cancer.

It is much more difficult to pick up on neurological symptoms such as headaches and even some of my other symptoms could easily have been because of stress – that’s what myself and my wife thought and we’re both doctors. When it comes to brain tumours, vigilance really is key

Aria

In November 2018, Aria was a paediatric doctor at St Mary’s Hospital in Manchester. He started to get headaches which would often literally bring him to his knees in pain. He originally put them down to stress until he also started having problems with slurred speech.

Aria said, "It was a month or so before my diagnosis was when I started to notice things weren’t right. As someone who is supposed to be looking after other people for a living, I struggled to take on the role of the patient instead. My one piece of advice is if you think you have a serious symptom then please speak to your doctor – don’t leave it like I did."

Aria did visit his GP who referred him for a MRI scan. However, he decided to attend A&E the following day. A MRI scan, along with further tests, soon confirmed that Aria had a cerebellar medulloblastoma brain tumour.

Aria had surgery followed by chemotherapy and radiotherapy. However, he was in hospital for more than two months due to persistent vomiting and problems moving around without assistance. This included the festive season although, with support, he was allowed home on Christmas Day to be with his family, including his son who was 18-months-old at the time.

Aria returned to work in November 2019, just over a year after his diagnosis. He had to manage ongoing symptoms including fatigue, nausea and troubled vision. He had physiotherapy to help him regain independent movement as well as speech and language therapy to overcome some communication issues which he had been having after the surgery.

Aria said: “Walking has been and still is a big issue for me due to problems I have been having with co-ordination. Over time, it has improved but, with the help of the physiotherapists, I basically had to learn to walk again from my hospital bed.

I remember towards the end of my hospital stay I walked by myself down the corridor and the staff cheered me on because they had seen me struggle for so long. I realised then how far I have come and the support was invaluable.

Sadly, a scan in March this year, just before Lockdown was announced, revealed that a new tumour had grown in the same place in Aria’s brain. He had not had any symptoms so it was a total shock at the time. More surgery followed as well as chemotherapy. Then, once again, in July another scan showed that yet another tumour had grown in the same location so Aria had a third operation followed by six weeks of radiotherapy. Aria sadly passed away in February 2021.

The Brain Tumour Charity is working tirelessly to provide help and support for people who have been affected by a brain tumour as well as fund research into the disease, which is the number one cancer killer amongst children and adults under 40 years old.

You can support the family’s fundraising for The Brain Tumour Charity here: https://www.justgiving.com/fundraising/aria-nikjooy

You can purchase Broken Brain: Brutally Honest, Brutally Me at Waterstones, Amazon or The Endless Bookcase.

Media contacts at The Brain Tumour Charity

Press office contact details:

Phone: Mon-Fri, 9am-5pm: 01252 237864
Out of hours media contact: 07990 828385
Email: pressoffice@thebraintumourcharity.org