Aria Nikjooy, a Paediatric Trainee Doctor from Manchester, was diagnosed with Brain Cancer in 2018. He has gone through two tumour recurrences, one initial tumour and then it came back twice, he is currently having treatment. The father of one, has now published an illustrated children’s book called Eddie And The Magic Healing Stone which he hopes will explain to his son, what has happened to Daddy, for when he is older.
The book tells the story of Eddie the Dinosaur and Larry the Lion by touching on the concept of sickness in a parent. A way to gently introduce the concept of illness in a parent, and also just to entertain with a story full of magic and silly characters. It is suited to ages 3-7 years olds.
Here is Aria’s Brain Cancer Story:
Aria: In November 2018, I was having awful headaches all over my head which caused me to sometimes drop to the floor in pain. I don’t usually get headaches really, my wife and I put them down to stress – my job shifts as a Paediatric Trainee Doctor were intense.
My speech started to slur, phone conversations at work would often end with ‘eh? What are you saying?’
I knew something was wrong, so I went to see my GP a couple of days later, she arranged an urgent scan and asked me to go to the opticians that day for a check-up. I threw up in the optician’s toilet, I went home.
Went to A&E the next day for an MRI scan which showed I had a ‘suspicious mass in my brain’. After more tests, I was diagnosed with a Cerebellar Medulloblastoma.
I had brain surgery, radiotherapy and chemotherapy. I was in the hospital for about two and a half months, too sick to be allowed out until I could stop vomiting, and able to walk down the corridor without someone holding me like a puppeteer.
‘Up till March 2020, the treatment had worked. I then had my first tumour recurrence and my second operation, followed by a different chemotherapy regimen.
Things went fine at home enjoying recovering from Neurosurgery and the COVID-19 lockdown before I had my second tumour recurrence and then third operation in July 2020.
I’m currently going through my second round of radiotherapy as an outpatient, soon to be followed by some other sort of chemotherapy.
Currently, at home, I have regular Physiotherapy and Speech and Language Therapy sessions. When I’m not doing any of that, I spend my time shouting at daytime TV, passing traffic or my toddler son.
When I’m not shouting, I like to write stories, watch tv/films and go out for walks, either with my wife or on my own.
Covid-19 pandemic
I had both my second and third operations during the COVID-19 pandemic. In this time, I wasn’t allowed into the hospital waiting area with my family. They weren’t allowed to see me on the ward either. From the point that I was marched off to surgery, I next saw my wife when I was being discharged.
My wife and I spoke over video calls but by the end of the first day we both knew I would be home soon and so the calls weren’t too harrowing!
Both admissions for my 2nd and 3rd operations lasted 2 days, and there was very much an ‘if you don’t have coronavirus and you can walk, then you can go home’ ethos amongst the staff.
So, I gave the performance of my life for the physiotherapists when I walked about, and with the neurosurgeon’s help, I was able to escape the hospital quickly.’
Where does your passion for writing come from?
I’ve always loved reading and thinking up stories but as I became a doctor, I pursued science and literacy took a back seat in my life.
My inspiration for writing now, was being able to write something for my toddler son, in part to gently introduce the concept of illness in a parent, and also just to entertain with a story full of magic and silly characters. My inspiration for the book story is transparent if you know me – my son is the little lion and my wife is definitely the dodo!
Eddie the dinosaur finds himself in trouble when he goes out for a walk. It is up to Larry the Lion to find the Magic Healing Stone and save his dad before it’s too late.
This book is intended to tell the story of Eddie and Larry by touching on the concept of sickness in a parent. Even if both parents are perfectly healthy then hopefully your little one can still enjoy this story.
What is the toughest challenge a survivor’s face?
For me, physical side effects such as being wobbly (technical term), being nauseous or not being able to use my left hand without shaking, are all things I just have to deal with, and I’ll always be mindful that I’m actually very lucky.
I’m not dead for one, my personality/memories are intact (much to my wife’s chagrin), and I can walk to the fridge on my own. And back.
My toughest challenge has been to come to terms with my situation, with myself. My disabilities are not obvious to people initially; once I open my mouth or walk around it then becomes apparent that I’m not firing on all cylinders. Being comfortable with my new place in the world is my toughest challenge.
Any advice for people or loved ones that get daunting diagnoses?
- Look after yourself as much as you can and don’t push your loved ones away, pull them as close as you can.
- Those you love will be your support in every way and will be your motivation/inspiration to get better, just by being there.
- Also, don’t forget that your suffering is being felt just as intensely by those around you, don’t ever take this for granted and just remember they’re hurting too.
- My advice to the loved ones around someone suffering, is to look after yourself as well and also just to keep loving and loving, no matter what the response is.
Tell us something about yourself that people probably didn’t know?
I played the donkey in my school’s Nativity play, and I was damn good too.
Conclusion: Thank you to Aria for sharing his story and for publishing a wonderful book to help families and children. Grab Your Own Copy Here – Eddie And The Magic Healing Stone
