Edward Kelly

4 min read

Shortly after his third birthday Edward Kelly, of Flintshire was diagnosed with a medulloblastoma. Initially, doctors said his inability to sleep for more than 90 minutes at a time was due to toddler not being left to self-soothe. When his symptoms progressed to falling over, his mum, Catherine, trusted her intuition and demanded an MRI scan which revealed the devastating discovery of a mass on his brain. Now, after enduring surgery, gruelling chemotherapy, intense physiotherapy and multiple interventions, Edward is a happy seven-year-old schoolboy. Catherine understands that not everyone’s story has a similarly positive outcome, and she wants to share Edward’s story to help raise awareness of the disease. 

Here is Edward’s story, as told by his mum, Catherine…

Ever since Edward was born his sleep was often in short bursts, no more than 90 minutes at a time. As he grew older his sleep remained the same, doctors would tell me it’s because of co-sleeping and being a breast-fed baby. Edward had three older siblings and I felt confident that the way he was being raised was not the cause of his dreadful sleeping pattern, this went way beyond that. Eventually it became something we lived with, however I always felt there was something more.

By the time Edward was two-and-a-half, he started walking with a wide gait and began to fall over a lot. It was made all the more noticeable as I was on maternity leave with our daughter, Edith. We live in an old house with uneven floors so when Edith started to crawl we made changes to the layout of furniture. When Edward would tear around the house and run into things in the living room, despite feeling something else was responsible, my husband, Shaune and I thought it could be down to these layout changes. This continued for months.

Whilst in conversation with Edith’s health visitor I happened to mention Edward’s lack of balance and coordination. She offered practical advice: did Edward need glasses, was he getting over an ear infection, did he have any undiagnosed hip problems? She helped us by starting the referral process and soon enough we were seen by an ophthalmologist and Edward needed glasses. He had an x-ray which came back as negative for any problems with his hips and we were waiting for an appointment with a physio to confirm if there were any problems with his muscular development.

His balance quickly deteriorated, so much that at Edith’s christening in early September 2018, he was holding my hand to stay upright, without it he would fall. It got to the point where nursery said that Edward needed to sit down and shuffle along the floor to get outside and he’d miss the glass as he attempted to fill it with water as his hands were shaking holding the jug. I knew something was wrong and began to trust my mother’s instinct.

One night I was sitting with Shaune and blurted out ‘it must be a brain tumour’ as I went over everything in my head. It seemed as though doctors we were working through a list of things that we knew it wasn’t. I’d been looking online at information and even borrowed books from the library at everything we were told it could be. This included dyspraxia and cerebral palsy but nothing I read seemed to fit what was happening to our boy - he was okay and now he wasn’t. In the absence of anything else, it had to be a brain tumour.

I needed an answer and rather than remain on the non-urgent waiting list for an MRI scan, I applied for a credit card, prepared to pay the thousands a private MRI would cost.

Fortunately, the doctor listened to my concerns and ordered a scan to “reassure me” it wasn’t a brain tumour. In fact he told me Edward was unlikely to have a brain tumour as he was meeting all his milestones and a brain tumour would make him a lot more poorly.

In the meantime, on 29 October, I took Edward to his ophthalmology review where the ophthalmologist saw him fall over several times in the short walk from the waiting room. I explained what we had been through with Edward and after noticing swelling behind his eyes, he made an urgent telephone call to bring forward the MRI scan which was scheduled for the following month. By the time we got home that day, we had six missed calls from Glan Clwyd, our closest hospital, asking us to bring Edward for an urgent MRI scan. The results confirmed our biggest fears.

We were sat down and told: ‘We’ve found a blockage on his brain and an ambulance is on its way to take Edward to Alder Hey Children’s Hospital in Liverpool for emergency surgery.’

Edward and I were greeted by neurosurgeon, Professor Conor Mallucci, who despite telling us of the grave risks that came with brain surgery, seemed to completely normalise the situation and his presence filled us with confidence. He said: ‘I promise to give you your son back, he may not be the same boy, but I’ll give him back to you.’

Nine hours later, Mr Mallucci did as he said and gave us back our son, having removed 95% of the tumour which was diagnosed as a medulloblastoma a fast growing, high-grade brain tumour.

“Had we left it any longer, the outcome would have been fatal as the mass was causing Edward’s organs to shut down.”

Edward suffered with hydrocephalus as a result of the tumour and had further surgery to fit a shunt. He had to relearn how to walk and swallow, how to hold a spoon and get up from a chair, literally everything had to be relearnt. Three weeks after surgery Edward began chemotherapy in an attempt to save his life by trying to stop the tumour regrowing. He underwent a protocol called ‘Headstart 2’, the strongest ‘off the shelf’ treatment available for infants. For seven months Shaune and I would split our time staying with Edward whilst the other one was at home with his four siblings, because the treatment made him so incredibly poorly he spent almost the entire time in hospital.

During his final round of high-dose chemotherapy and stem cell transplant we were housed in an isolation room. As he lay in the bed, recovering after having his immunity completely wiped out from the high dose chemo, we both watched television coverage of The London Marathon that year. I promised myself that should Edward pull through this, I would one day run the marathon. I felt the need to raise money and try to give a little bit back to the incredible people who dedicate their lives to finding a cure for this most devastating of conditions.

It is the biggest honour to be entrusted with a place on the 2024 Marathon team for Brain Tumour Research which will take place while we mark five years since Edward completed treatment. It feels like a fitting way to mark such a monumental milestone.

On 29 May 2019, Edward finished his treatment and was able to return home. Shaune and I finally had time to process the situation and we started to think about everything we had been through and been told.

I was trying to not get obsessed over the statistic that just 12% of those diagnosed with a brain tumour survive beyond five years compared with an average of 54% across all cancers. Surgery and chemotherapy had been our only option at that stage, but I was horrified that after all of this treatment, there was such a low survival rate. How could Edward have gone through multiple surgeries and gruelling chemotherapy to be told that there’s a chance he might die anyway.

Doctors had said the tumour could have been growing from birth.

It can grow back. We know the relapse will be devastating and the options of treatment if that happens will be limited. I remember asking Edward’s consultant: what happens if it comes back? Her response was that we would ‘cross that bridge if we ever had to’, I felt immediately that she didn’t want continue that particular conversation. I realised why later, after searching online myself I read that relapse for medulloblastoma is often fatal; that is with me every single day.

I won’t allow it to control our lives but it means that the future will always be uncertain as a parent that’s the hardest part. After everything our son has been through it still might not be enough.

Edward is living with an acquired brain injury and has been left with a lifetime of challenges. His mobility and coordination has been affected, he struggles with processing and executive function. Anything that requires the use of fine motor skills is particularly challenging and Edward is having to learn how to manage his emotions. It takes him time to find his words. As he gets older Edward better understands the reasons for his challenges and that can be upsetting for him.

He has endless appointments and ongoing tests which - although are welcomed because he is being closely monitored and cared for - are reminders of the lifelong impact of this diagnosis. Treatment doesn’t stop when chemotherapy does or when the operation is over and this is the price we have to pay.

Despite this, he is doing well at school and keeping everyone on their toes. He loves Super Mario, playing X-Box, going swimming and Minecraft.

We are under no illusion about how lucky we are to be in this position and to have Edward here with us, we are grateful for every single day we have been gifted. It is a privilege denied to so many and there are so many families we have met along our journey for whom the outcome has been devastating. It is truly an outrage that so little funding is available to understand brain tumours.

Brain tumours are not rare. If we are to bring the treatment of brain tumours in line with other cancers such as breast cancer and leukaemia, we must invest in more research to understand this disease.

We desperately need more research, kinder treatments, better outcomes and more survivors. 

Catherine Kelly
July 2023

Brain tumours are indiscriminate; they can affect anyone at any age. What’s more, they kill more children and adults under the age of 40 than any other cancer... yet historically just 1% of the national spend on cancer research has been allocated to this devastating disease.

Brain Tumour Research is determined to change this.

If you have been inspired by Edward's story, you may like to make a donation via  www.braintumourresearch.org/donation/donate-now or leave a gift in your will via www.braintumourresearch.org/legacy

Together we will find a cure.

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