In Hope Stories
Just 1% of the national research spend has been allocated to this devastating disease
In April 2020, as the UK was coming to terms with a national lockdown caused by the COVID-19 pandemic, the lives of the Wharton family from Flintshire were turned upside down for a completely different reason. Their only child, four-year-old Aaron, was diagnosed with a rare, aggressive form of brain cancer. Brave Aaron has since undergone brain surgery, radiotherapy and has had a gastrostomy feeding tube fitted. His latest scan results were stable but Aaron’s parents know that their son’s future is uncertain and they’re determined to make the most of every day together as a family.
Here is Aaron’s story, as told by his mum, Nicola …
We first noticed that Aaron had developed a droop on the left side of his face in April 2020. His beautiful smile looked lopsided. He loves watching pirate films, so at first, we thought he was pulling faces pretending to be a pirate but when, on Easter Sunday, he also started being randomly sick, we took him to Deeside Community Hospital. The doctor carried out tests on Aaron’s walking and coordination, as well as the receptiveness of his eyes. Initially, a diagnosis of Bell’s Palsy was given. We accepted the assessment, although I had also been googling his symptoms and, oddly enough, a brain tumour did come up in my searches. But Aaron looked well and my husband Lee and I thought he would’ve had other symptoms if it were something as serious as a brain tumour.
On Easter Monday Aaron seemed to have improved a little and was regaining his appetite. However, the next day, his co-ordination started to dramatically deteriorate. Lee took him out for a walk and brought him home after just a few minutes, as he was walking with a wide girth and tripping over a lot. We knew something just wasn’t right, so we arranged a video consultation with the doctor. He saw that Aaron couldn’t walk in a straight line and was stumbling, so he referred us to the children's ward at the Countess of Chester Hospital in Cheshire. We went straight there and saw a doctor, who agreed that it was probably Bell’s Palsy and we were sent home again. The following day, Wednesday 15 April, Aaron’s condition was getting worse, so we went back to the Countess of Chester, where he underwent further tests and observations.
“After a series of MRI scans, we were given the devasting news that there was a large ‘growth’ on the back of his head (described as the cerebellum close to the 6th and 7th nerves).”
Within the hour they said they’d found a tumour. We were immediately transferred to Alder Hey Children's Hospital in Liverpool, under the care of the specialist surgical neurological team. I was in utter shock. Lee broke down. I had never seen him cry before. We were both devastated and upon hearing the words ‘brain tumour’, we automatically thought the worst. Aaron was admitted to the High Dependency Unit (HDU) at Alder Hey. When we arrived, we were met by a room full of registrars, nurses, junior doctors and consultants. There must’ve been at least ten medics there and we had a list of questions to ask them: How serious is it? How big is the tumour? What are the next steps?
We were told that the tumour was large and was in the posterior fossa. It was 9pm and they said we would meet the surgeon the next morning, with a view to Aaron having brain surgery on Friday 17 April. We just couldn’t believe how quickly everything was happening. The next morning, we met Aaron’s surgeon, the amazing Mr Conor Mallucci. He walked us through what would happen during the operation and warned us that it was a complicated procedure, which would last up to 10 hours. He was aiming to remove 100% of the tumour but spoke about the possibility that some of it might have embedded into healthy tissue. To contemplate our precious little boy undergoing such drastic, life-threatening surgery was just so awful.
We clung on to the fact that Mr Malluci is world-leading in this field of surgery and he seemed confident that he would be able to remove the entire tumour. True to his word, after 10 excruciatingly long hours, we received the amazing news that the whole growth had been successfully removed. Aaron had gone into the operating theatre at 9.30am that morning and we didn’t see him again until 9.30pm that night. We were elated to hear that he had come out of theatre and that all had gone well.
“When we saw him after the operation, he had a catheter fitted and a feeding tube in his nose. There seemed to be wires everywhere. The incision was huge, spanning half of his head.”
A couple of days after surgery, we met the oncology team and were given the heart-breaking news that the results from the biopsy showed the tumour was grade 3 (high-grade) anaplastic ependymoma. Ependymoma brain tumours tend to be diagnosed in children around the age of five years old. ‘Anaplastic’ means the tumour is formed of cancer cells that are dividing rapidly and have little or no resemblance to normal cells. When we found out it was aggressive and rare, we soon became very conscious of the stark prognosis.
Following his surgery, Aaron’s journey was far from over and he endured several set-backs and complications during his time in hospital. Due to where the tumour had grown, it was sitting above critical nerves which control speech, swallow, hearing and co-ordination, to name but a few. Unfortunately, immediately after surgery, it was evident that Aaron's speech had been affected and he had difficulty communicating. He had temporary mutism and couldn’t swallow, which meant he needed suction assistance and had to be fed via a nasogastric (NG) tube. He also had a Broviac line fitted in his chest. He developed surgical meningitis and had to have a high dose of intravenous (IV) antibiotics. With the heightened risk of contracting COVID-19, he was moved onto an isolation ward. Being in isolation meant that only one of us could stay with Aaron at a time, so we took it in turns to do 24-hour shifts with him. Thankfully, we were given accommodation at the Ronald McDonald Charity House in Liverpool, so even when we weren’t with him, we could stay nearby. Otherwise, it would have been a 35-mile car journey each way between our house and the hospital.
Aaron also suffered a build-up of cerebrospinal fluid (CSF) at the back of his head. They performed a lumbar puncture to draw off excess CSF but it kept getting blocked and he had to have the fluid syringed from his head. Three weeks after his first operation, Aaron needed to be rushed back to surgery. The fluid on his head had increased significantly and despite performing a second procedure to syringe the excess, the medical team decided that the best course of action would be to reopen the wound, to try to find where the leak was coming from. They would then repair this to see if it stopped the build-up of fluid. As a precaution, a second lumbar drain was fitted, in case surgery was not successful. He was definitely proving to be a challenging case for the Alder Hey team. It was all so much for Aaron to deal with and, of course, he would often get upset.
“Twenty-four hours after his second surgery, Aaron developed meningitis again, having barely recovered from the first bout of it. In total, he spent ten long weeks in hospital and was finally discharged on 12 June 2020.”
We were only home for two nights, however, before Aaron’s 6.5-week proton beam radiotherapy course began. As it took place at The Christie in Manchester, we relocated from Wales to England for the duration of his treatment. Aaron was scared but coped remarkably well with radiotherapy. He had to be put under with anaesthetic each time and would wake up to be faced with a medic wearing full PPE. He had a total of 33 sessions and thankfully, he didn’t suffer with too many side effects, only a little sickness and tiredness. He also lost some hair and developed a blister and where the proton beam was targeted. In spite of the hardship, he enjoyed his daily trips to what he called the ‘play hospital’. We did lots of play therapy with the specialists at The Christie, who give Aaron a doll that had the same tubes fitted as he did.
“After a lot of research, we decided to enter Aaron into a clinical trial that offers chemotherapy to look at whether this positively affects late relapse in the ependymoma cancer.”
This is completely randomised and gives a 50% chance of having the treatment offered. Unfortunately, the randomisation of selection did not go in our favour. It was disappointing that we had to rely on a computer to give us a decision rather than an actual human being. There is the potential that the cancer can return again anywhere in the head or spine. We know that this is going to be a long fight for us all.
On 8 September 2020, we celebrated a huge milestone, as Aaron enjoyed his first day at primary school. To think how much he had been through over the previous four months, to get to the point of being able to start reception class and attend full-time with his peers, was simply incredible. He really is our superhero and we are all so very proud of him. More good news came at the beginning of November, when we received the results from his first post-operative MRI scan and they were completely clear. There were no traces of any tumour on his head or spine. After an incredibly anxious time waiting for the results, the absolute joy and relief we felt upon receiving the news was immense.
Since Aaron’s diagnosis, we have had a remarkable amount of support from our network of family and friends and the wider community in Buckley, North Wales. My wonderful friend, Di, is organising a sponsored walk for Aaron. The aim is to raise enough money to buy an adapted buggy, to help manage the side effects his brain tumour and associated treatment. Aaron looks a healthy little five-year-old boy but he does sometimes struggle with a weakness in his left-hand side, which leaves him tired and unable to walk great distances. Combined with the long-term effects of radiotherapy, Aaron does not always have the same energy levels as he did before his diagnosis.
“An adapted buggy will help provide as normal a life as possible; enjoying walks, trips to the zoo and the beach – all the things that Aaron so loves and misses.”
We are aiming to raise £700 by completing a six-mile sponsored walk on 6 December 2020. Anything raised over this target will be split equally between the charities CLIC Sargent and Brain Tumour Research. The walk will start at Aaron's school, Southdown Primary in Buckley, and finish at the nursery he attended since he was six months old, Little Stars Deeside. The support they’ve shown us since Aaron's diagnosis has been instrumental and so appreciated. They adopted the motto 'hugs, kisses and rainbow wishes' for Aaron and sold knitted rainbows and hearts to fundraise for him and show their support. They are, and will always be, an extended family to us and we are so very grateful to them. A local jeweller, ‘Precious Angelic’, also designed bespoke bracelets, to help with the fundraising.
2020 has been a year I could never have imagined in my worst nightmares and to think that someone so small could go through what Aaron’s endured, is inconceivable. I also struggle to comprehend why there isn’t more funding into brain tumour research, especially when you consider that the disease kills more children and adults under the age of 40 than any other cancer. I seem to be hearing of more and more cases of brain tumours, yet funding levels remain drastically low. I am committed to helping to raise awareness of the issues surrounding brain tumours, having experienced first-hand the devastation they cause.
“As we approach the end of a truly monstrous year, we are celebrating the fact that Aaron is, for all intents and purposes, just like any other happy, healthy little boy.”
He still has his tummy peg in but his Broviac line is now out and there are no concerns with his swallow. His vocabulary may not be as extensive as it might have been without the brain tumour but his speech has returned and continues to improve all the time. He is enjoying school and learning and loves playing with his LEGO. He will continue being monitored with MRI scans every three months, with his next one scheduled for January. We will just take each scan as it comes and deal with whatever happens. Meanwhile, we are really looking forward to Christmas and plan to spoil Aaron this year, as he so deserves it. We’re making each event as memorable as possible, as we just don’t know what will happen in the future. One thing this experience has taught us is that family matters more than anything else and as long as we’re all together and are all well, that is what is important. It is the best feeling in the world knowing we can truly celebrate Christmas at home as a family and finish this horrendous year on an incredible high.
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 Aaron’s story, you may like to make a donation via or leave a gift in your will via www.braintumourresearch.org/legacy
Together we will find a cure.