Aria Nikjooy, 29, from Sale in Greater Manchester, has written a children’s book ‘Eddie and the Magic Healing Stone’ which introduces the concept of illness to children. Aria hopes that this will help his son to understand his dad’s experiences as he gets a little older. Proceeds from the book will also be donated to The Brain Tumour Charity.
This is 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 more than £4,600 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.
"It was easy to involve my son in the book because it was about silly characters and fantasy rather than anything too serious. The walk is another lovely way for him to be involved yet in a positive and enjoyable way for him and his friends.”
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 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.
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 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 this year, 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. He is currently waiting to find out what the next stage of his treatment will be.
Aria 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 said: "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
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.
Sarah Lindsell, chief executive of The Brain Tumour Charity, said: “Aria and his family have been through such an ordeal. Yet, their proactive approach to helping others who have been affected by a brain tumour is truly admirable. We truly appreciate all that they are doing for us.
“Like Aria, many people do not recognise the early warning signs of a brain tumour or they are put down to something else entirely. We’re working hard to raise awareness of the signs and symptoms of this killer condition to stop it from robbing so many people of their lives and loved ones.”
Support the family’s fundraising for The Brain Tumour Charity here: https://www.justgiving.com/fundraising/aria-nikjooy