Matthew's story
Carolyn is supporting Neuroblastoma UK by taking on the Glasgow Kiltwalk 2024 in memory of her son, Matthew, who sadly passed away in November 2022 at the age of two and a half. She shares Matthew’s story here…
“Matthew was so full of mischief…”
Matthew was so full of mischief. He kept me on my toes and his smile could light up any room. Even when he was really poorly, he had the nurses wrapped around his little finger. He could charm them into getting anything he wanted.
Despite everything he faced in his short life, it is his strength that got me through it all…
Matthew was my only child and he was diagnosed with Stage 4 High Risk Neuroblastoma in April 2021 when he was 14 months old.
IT TOOK SEVERAL TRIPS TO HOSPITAL TO GET A DIAGNOSIS…
I had noticed that he was lethargic. He had gone off his food, had been violently sick a few times and had stopped showing interest in playing with his toys. He had also become so clingy that I could not even go to the bathroom without taking him with me. But despite numerous trips to the doctor and even A&E on several occasions, Matthew was repeatedly given antibiotics for supposed infections and I was made to feel like an overprotective first-time mum.
Eventually, on our fourth visit to A&E, when I was again told that all Matthew’s vitals looked good, I simply refused to leave and demanded he be given a full examination. A doctor was called who felt Matthew’s abdomen and within 20 minutes, we were in an ambulance on the way to a specialist children’s hospital. There, Matthew had an X-ray and we were told that a mass had been found in his tummy and that one of the oncologists would come and see me to discuss it. To be honest, I just assumed there had been some sort of mistake. I did not think for a second that Matthew had cancer and was not too worried at that point.
But a few days later, after undergoing scans and various blood and urine tests, we received the neuroblastoma diagnosis. I had never heard of it before, but I was quickly made aware of how serious it was. I was told it was in Matthew’s bones, liver, kidney and skull. There was sadly never any indication that I had reason to be hopeful. But the medical team of course promised to do their best for him.
“Matthew’s illness consumed my whole life.”
Within a week, my little boy went from having nothing wrong with him to starting chemo. It was very tough as Covid rules were still in place. I remember my parents driving over to the hospital to see us and me having to break the news to them while standing outside. Only myself and Matthew’s dad were allowed in the hospital with him. Matthew was in and out of treatment for the next 18 months, including surgery to remove over half of his liver and gallbladder, followed by another round of intensive chemo, a stem cell transplant and a month of radiotherapy.
I took one day at a time. I did not allow myself to feel hopeful at any point. Matthew’s illness consumed my whole life. We were either in hospital or isolated at home.
He started immunotherapy in January 2022 and finished it in April. By August, we were told he was in remission and under regular monitoring. My parents were so delighted and I understood that they needed to feel some joy after everything we had been through, but I could not allow myself to get overly excited. I was well aware that the chances of the cancer returning were high. We tried to get back to some form of normality, but the reminders were still there that Matthew was very sick: he was still on medication and was being fed through a tube.
In October, I noticed the same patterns returning. Matthew was lethargic, sick a lot, not eating and there was bruising around his eyes. His next scan was due a few days later. I just knew that something was wrong when the nurse offered me the key to the accommodation that we had used when Matthew had first become ill. She said it would be somewhere for me to rest and get some washing done, but I could tell this was not a good sign.
“Matthew was always smiling…It was hard to believe how seriously ill he was…”
When Matthew went down for his scan, I became anxious. These things usually took around six hours, but after seven, then eight, hours passed with no news, alarm bells started ringing for me. When the scan was finally over, the consultant came to see me. He told me that Matthew’s neuroblastoma had now spread to his brain. It was not treatable, but they would do what they could to prolong Matthew’s life and make him as comfortable as possible. It was devastating news. Matthew was two-and-a-half-years-old and when I saw him sitting there, eating his favourite crisps and watching TV, always smiling, it was hard to believe how seriously ill he was.
Surgery was planned for a few days later in order for Matthew to have a Hickman line fitted. But after a few hours under anaesthetic, the medical team was struggling to wake him. Whilst in the recovery room afterwards, all the emergency alarms started going off and Matthew was rushed in for an emergency MRI where it was discovered that he had suffered a bleed on his brain. He was rushed back into surgery to have a drain fitted.
I couldn’t think or speak. I remember one of the nurses having to phone my dad for me to tell him the news. My world had gone. Matthew never really recovered after that. He remained in intensive care. A few days later, on the only night that I had not stayed over at the hospital, I was called at 3am and was told that Matthew had suffered another bleed on his brain. He was taken back into theatre, but the medical team realised that there was nothing else they could do for him. They wanted us to be able to say goodbye.
SAYING GOODBYE…
The whole family were allowed to visit Matthew in intensive care and I was given the choice of whether I wanted him moved to a hospice or back home. Having spent the best part of the previous two years on the ward, that is what felt like home to us. The staff had become like family. So Matthew was moved back into his room on the ward and all of us were able to be with him when he passed away. He was taken off his ventilator at 11am on Tuesday 8th November and we were warned he would slip away within a few hours. He passed away 14 hours later on Wednesday 9th November at 2:15am.
In the end, it was very peaceful. I have no idea what the tumour would have done to him or what sort of life he would have had. But this way, he was in no pain, he was just sleeping and could slip away peacefully.
I did not deal with his death initially. I was in denial. I was able to spend some time with him at the hospital - the nurses gave him a bath and we dressed him in a new pair of pyjamas. Then, we were allowed to spend time with him in a special ‘Rainbow Room’ at the hospice in the days leading up to his funeral. All the machines and medication were gone. The doctors and nurses were gone. I think it was only then that it hit me that Matthew was also gone.
When I think about what he went through in his short life, I am sure that any adult would have said ‘no’ and given up. But he faced everything with such strength. I know that I only managed to get through everything because of him and the way he handled it all.
I believe that people need to know more about neuroblastoma and we need so much more research into the disease, so that better treatments can be developed to ensure other little boys like Matthew can be saved. That’s why my sister, my friend and I will be doing the Glasgow Kiltwalk for Neuroblastoma UK. We want to raise as much money as we can for vital research so that other families do not have to experience the heartache and pain that we have been through.
