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 when only child, four-year old Aaron, was diagnosed with a rare, aggressive form of brain cancer. Despite Aaron, undergoing surgery multiple times, and having radiotherapy and chemotherapy, he ran out of treatment options and passed away on Easter Sunday 2023, leaving his parents heartbroken.
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 also started being randomly sick, so 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’s co-ordination started to dramatically deteriorate and he was tripping over a lot. We arranged a video consultation with the doctor who 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.”
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. We were told that the tumour was large and was in the posterior fossa.
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.
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 a grade 3 (high-grade) anaplastic ependymoma.
Unfortunately, immediately after surgery, it was evident that Aaron had Posterior Fossa Syndrome (PFS) - his speech had been affected and he had difficulty communicating. He also had temporary mutism and couldn’t swallow, which meant he needed suction assistance and had to be fed via a nasogastric (NG) tube.
Aaron 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.
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.
“Twenty-four hours after his second surgery, Aaron developed meningitis again, having barely recovered from the first bout. 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 six-and-a half-weeks of 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.
“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.
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. 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.
As 2020 came to a close, we naively thought we could now carry on as a normal family and put the past year behind us.
However, in February 2021, the consultant told us a scan had highlighted something, although it could have been down to Aaron moving during the scan. In the back of my mind I had a niggling worry.
A few months later in June, we received the earth-shattering news that Aaron had relapsed. We’d felt so hopeful that Aaron had beaten the tumour – he’d had no symptoms and his coordination was really good. He’d also regained his ability to swallow and had been signed off by the speech and language therapy team.
Aaron underwent further surgery and the surgeon was again confident that all of the tumour had been removed.
“However, we were told that his chances of a cure had decreased significantly because he had relapsed so quickly. His survival beyond five years was now 10% as opposed to 60%.”
Aaron lost his ability to swallow again and this never returned. He relied on a permanent feeding tube through his tummy.
Aaron also had issues with hydrocephalus and infections which meant he remained in hospital for five weeks.
In August, Aaron had to undergo further surgery after we were given the crushing news that there was significant tumour growth in just six weeks. Fortunately, Aaron seemed to bounce back from this operation although he didn’t return to school in September because he started six weeks of radiotherapy which he had daily (Monday to Friday) at The Clatterbridge Cancer Centre on the Wirral.
On New Year’s Eve, Aaron started chemotherapy. He had a really rough ride with the treatment and was frequently neutropenic, had multiple line infections, platelet and blood transfusions which meant he was constantly in and out of hospital.
“Aaron had missed a whole year of school and was excited to go back in September 2022. He had a scan in the second week back and the following week, devastatingly we learnt the cancer had come back again.”
This time it had also spread to the ventricles on top of his head. We were told there was no further treatment available. We should consider palliative care. Like before, it was a complete shock because Aaron had no symptoms. Over the summer, we’d been to Center Parcs and LEGOLAND and Aaron had been so happy on the rides and really loving life.
We had further meetings to see if there were appropriate clinical trials, but nothing was available for Aaron – by then it was known that he had a variation marker in the genetic make-up of his cancer type, a mutation of 1Q gain, that there were no targeted drugs for.
We took Aaron to Disney Land Paris and had days out and just tried to make as many memories as we could.
When Aaron had his next scan, we learned the tumour on the top of his head had doubled in size – which was again a shock seeing as he was still enjoying life and not experiencing headaches, although he did use a wheelchair from time-to-time when he got tired walking.
It was decided that Aaron should have surgery to relieve pressure in his head and then further surgery in November 2022 to remove the tumour on top of his head, followed by oral chemotherapy to slow the growth of the other tumour in the posterior fossa.
“A final MRI scan in January 2023 showed the tumours had regrown significantly. Aaron was taken off chemotherapy to allow him to have some quality of life. The team was surprised Aaron wasn’t having seizures which normally occur as patients come towards the end of life. He only started experiencing them the day before he passed.”
Aaron’s last day in school was appropriately Wear A Hat Day 2023. We then took him on his favourite trip to a caravan in Porthmadog where he loved playing in the arcades. Noticing his left eye was deviating we took Aaron back to hospital. His condition was deteriorating quickly with noticeable weakness down his left side and hand-eye coordination becoming poor, and because it was the Easter Bank Holiday weekend, they felt it was the appropriate time for Aaron to be admitted into the care of Ty Gobaith, a children’s hospice in Conway.
Aaron was really tired and didn’t really want to get up and do anything. On the Saturday he had his first seizure, followed a few hours later by another one which took him longer to come out of. On Easter Sunday, three years to the day since he was diagnosed, Aaron had another seizure which he didn’t come out of and passed away.
Nothing prepares you for losing your child. He was robbed of his life and from being with us. It’s unbelievable that with all the advancements in so many other cancers there is so little available for those diagnosed with brain tumours and especially children. Aaron was so full of life but was lost to the cruellest of diseases.
I am very angry. We’ll never get the survival rates of say breast cancer without a lot more funding. I see trials going on in the United States which we don’t have here.
“Some days Aaron’s loss is so overwhelming. The house is so quiet – his room is just how he left it and we still have his toys around the house. My life has no purpose anymore. I worked hard to build a career in order to be in a position to have Aaron and now both Lee and I feel a piece of our heart is gone and we’ll never be the same.”
Nicola Wharton
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 touched by Aaron’s story, you may like to make a donation via www.braintumourresearch.org/donate or leave a gift in your will via www.braintumourresearch.org/legacy
Together we will find a cure.