Alex’s Story
Alex was diagnosed with neuroblastoma in 2010 and sadly passed away in January 2013 when he was five-years-old. Alex’s dad, Ben, shares his story…
Alex was a real boy’s boy. He loved cars, trucks and aeroplanes, visits to the RAF Museum and trips to Legoland.
In Spring 2010, we noticed that Alex had a bit of a limp and was experiencing pains in his knee. The GP found nothing wrong, so we just put it down to growing pains and didn’t worry too much about it.
But it persisted and we ended up at the John Radcliffe Hospital in Oxford for tests. At this point, we had no reason at all to expect that Alex might have cancer, so we were slightly baffled when we arrived to find that we had been assigned to an oncology ward.
Alex underwent a series of tests, including an ultrasound, and I remember being with him when the radiographer put his machine against Alex’s tummy. I was curious about what I was seeing, so the radiographer pointed out Alex’s kidneys to me, but then showed me an area of markings that he said shouldn’t be there. I wondered what it could be, but by the end of the day, we received the diagnosis: Alex had neuroblastoma.
I knew nothing about it at the time, but became aware that it was a childhood cancer. The following day, I returned to the hospital with my wife and Alex to meet our consultant, Dr Kate Wheeler, who explained the situation to us. A tumour had been found in Alex’s abdomen and it was thought that he had secondary tumours elsewhere in his body. It was likely that those were causing his limp and leg pain. I suggested that I would Google everything when I got home to find out more, but one of the junior doctors in the room advised me that this would be a very bad idea.
In the course of just a few days, our lives were tipped on their heads. My wife and I contacted our employers and told them that we would not be able to come in for the next six months. We were well aware that it was not just Alex that would need our care and attention, but his older sister too.
Alex started treatment almost straight away. Within a couple of days, he was on chemo and six months later, he had surgery to remove his tumour. This was followed by more chemo and radiotherapy. The operation was deemed successful and nine months later, by September of the following year, Alex was considered cancer-free. We always knew there was a high chance of it returning, so I can’t say there was much of a celebration when he finished his treatment, more of an acknowledgement that it was over and his life had been saved for now. We were also acutely aware that Alex’s health battles were far from over: one of his kidneys had been damaged and we had been told that his treatment had probably rendered him infertile.
But Alex was at a turning point. The gruelling treatment was over and he could start school and finally get back to some form of normality.
But around five or six months later, his cancer returned. We noticed some lumps on his head and his regular blood tests confirmed his relapse. We knew he would not be able to have the same treatment as before, so this time he had targeted radiotherapy. He would have to go to hospital in London where he would take a targeted cancer drug with radiotherapy, sitting behind a lead screen and would be radioactive for a few days afterwards. It was 2012 and the London Olympics were on. I remember taking Alex to one of the events and he set off all the screening alarms. I had to convince the security officials that this five-year-old little boy posed no threat and was not carrying explosives.
By the end of 2012, we were aware that Alex’s treatment would not save his life, it would merely prolong it. He gradually became weaker and weaker, and sadly passed away in January 2013.
Alex never complained, despite everything he went through. He never felt sorry for himself. And that legacy has been really important for me to hang on to. I am generally a very positive person, but after he passed away, we made some big changes to our lives. We took the decision that my wife would go back to work and I would stay as a househusband to be present for our daughter who was eight-years-old at the time. I became a parent-volunteer at her primary school and never returned to the corporate world. I now work in a school, managing their Duke of Edinburgh scheme.
I became a trustee for Neuroblastoma UK for several years and have worked hard in the charity world. Over the years, and with the help of many others, I have raised around £190,000 for Neuroblastoma UK.
Losing a child has a devastating effect on a family, but I have learned that every individual copes differently. When Alex first passed away, I regularly went to a support group for bereaved fathers. Some remembered their lost child by celebrating their birthday or marking the day they died in some way. But we don’t do anything particular for Alex, we just remember him. For me, it was reassuring to know that I was not alone in going through this awful experience. That was important.
Thank you to Ben for sharing Alex’s story.
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