Jack's Neuroblastoma Story

The first signs

At the beginning of 2024 our lives seemed so normal. Jack was settling into his first year at school and seemed to be a perfectly happy and healthy 5-year-old. On the weekend of 13/14 January, Jack went to two soft play birthday parties. When I noticed he had a slight limp on the Monday, I didn’t think much of it. As the week went on and we couldn’t work out a reason for it, so I took him to the GP. I was told he was fine and that it was just a virus causing irritable hip.

Growing concerns

Over the next week I took him back to the GP and A&E several times. I was repeatedly told that he was fine and there was nothing to worry about. I probably looked like a neurotic mum taking her child to A&E for a limp, but my instincts told me that something wasn’t right. On the morning of 27 January, Jack was screaming in pain and wouldn’t walk. I phoned 111 at 6am and the clinician told me to take him back to A&E and request a blood test. That afternoon the blood test results came back, and we were told to take him to the children’s hospital, where they started two weeks of various tests and scans.

The diagnosis

A few days in, Jack had a scan of his abdomen, which revealed a mass sitting above his kidney. Two days later, an MRI confirmed our worst fears. That evening, the doctors told us that Jack had cancer. While they couldn’t confirm the exact type at that moment, they suspected neuroblastoma due to the tumour’s location. On 15 February 2024, we received his official diagnosis, high-risk neuroblastoma.

Starting treatment 

It will be a long and intense treatment path for Jack. He has just completed eight rounds of chemotherapy. He is soon due to have a stem cell harvest, and then at the end of the month, surgery to remove his tumour. Unfortunately, his road to recovery won’t end there. He will have high-dose chemotherapy followed by a stem cell transplant, radiotherapy, and immunotherapy. If everything goes as planned, he will complete his treatment by the end of 2024.

Awareness and fundraising for Jack’s future

We are now fundraising for maintenance treatment that is not available in the UK to try and prevent a relapse. Relapsed neuroblastoma is incredibly difficult to treat, and we want to give Jack the best possible chance of survival and a healthy future. Before Jack’s diagnosis I had never heard of neuroblastoma. Sharing his story is our way of shedding light on this disease. I don’t blame the health care professionals we saw before his diagnosis, but now I understand that his early symptoms should have flagged up something along the way. If you ever have doubts, please ask for a second opinion. You know your child best.

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