George's story
George was two-years-old when he was diagnosed with Stage 4 Neuroblastoma in April 2020. Thanks to his treatment on the BEACON clinical trial, George is now doing well and has been cancer-free for the past two and a half years. To mark Clinical Trials Day 2024, George’s mum Roxanne shares his story…
George’s symptoms
“George couldn’t stand, he wouldn’t let us touch his legs, would scream when we changed his nappy and was having night sweats.”
At the end of April 2020, George was suffering from full blown hives. We’d given him antihistamine but the rash would always come back. His brother has allergies so we just thought he had something similar.
A few days later, George was running around and then suddenly stopped and started to cry and scream. He hadn’t knocked himself or fallen, but he couldn't even stand from the pain. He then developed a fever and was sweating so we took him to A&E. The doctors checked him over, gave him some painkillers and we were sent to the children’s ward. At this stage, George was able to walk but still had a limp, his temperature was back to normal and the doctors thought the hives were a reaction to a viral infection. So we were sent home.
“He had developed bruising around his eyes, couldn’t tolerate light, wasn’t eating and was still in obvious pain. ”
But George got worse. He couldn’t stand, he wouldn’t let us touch his legs, would scream when we changed his nappy and was having night sweats. We had been told to wait two weeks, so we did as we were told, in spite of everything. I knew something wasn’t right, but I just thought the doctors would think I was being a neurotic mum.
On 31st May, we went back to hospital and George was seriously ill. He had developed bruising around his eyes, couldn’t tolerate light, wasn’t eating and was still in obvious pain. He was admitted for various scans, x-rays and tests. He had an operation to take fluid from his leg and another bump. Results showed that he had high infection markers and they thought George might have septic arthritis. I thought he might have leukaemia, but there was no cancer in his blood, so doctors wanted to do a urine test and bone marrow biopsy.
Ten days later, after an initial urine sample and before the biopsy, the hospital called. The urine sample had come back and George needed to be readmitted in the morning to start treatment straight away.
“ We were told George had stage four neuroblastoma and was given a 40-50% chance of survival. ”
The oncologist explained that George had neuroblastoma - it was the first time we had ever heard of it. He had a large tumour above his kidney and 29 areas in his bones. We were told he had Stage 4 Neuroblastoma and was given a 40-50% chance of survival. The same day that George was diagnosed, my husband Darren was told he was in remission from his cancer .
Even though we were in the first lockdown when George was diagnosed, I felt that we actually benefitted from it all, rather than it making things harder. The only difficult thing was that Darren and I couldn’t be together, as only one parent was allowed with a child at a time, and we lived over an hour away from the hospital.
But lots of our family and friends were furloughed so they were able to help with looking after our other children - we have eight in total! They set up a support group for us and helped out with cooking dinner every night. There is no way we would have been able to manage if everyone was working. They were all amazing.
“We were asked whether we wanted to put George on a clinical trial or for him to have an approved chemotherapy alternative. We chose to do the BEACON trial.”
George needed eight rounds of intense chemotherapy (Rapid COJEC); he would stay in for four days and then come home if he was well enough. It didn’t really clear up much of the cancer, although the 29 other areas reduced to 11 plus his main tumour. He needed surgery to remove the large tumour and they were able to get all of it out, leaving just a few cells behind. George also needed a stem cell harvest.
We were asked whether we wanted to put George on a clinical trial or for him to have an approved chemotherapy alternative. We chose to do the BEACON trial first, which meant six rounds of five days of chemotherapy, plus immunotherapy.
Because of George’s age and his size, the immunotherapy was over seven days. It was pretty intense and he needed morphine for the pain. We were told that George would be tested after two rounds of treatment, and if the cancer had progressed, he would be taken off the trial. After four rounds, he had no evidence of disease (NED).
George also needed high-dose chemotherapy and a stem cell transplant. On average, children need this for about 6-14 weeks, but our warrior George was out after five weeks. His treatment was due to finish in May / June 2021, and we initially panicked when we were told he would need another seven months. We were called in for a proper meeting with the consultant who told us that George’s scans were really good, but that if he deviated from the path at any point he’d need more treatment.
“George is doing really well at the moment and I’m so proud of him. He has been through so much but has been so good during all his treatment and has put up one incredible fight. ”
George is such an amazing little lad, we couldn’t be prouder. He coped with treatment so well and our other children were amazing too. We tried to keep everyone happy and positive during everything and if the family saw that George was happy, they were happy too. I wanted him to know that whilst things were bad, he could still have fun and be happy. We captured so many photos and videos because I really wanted to show that he hasn’t been held back during his treatment - George even wanted to wear a bow tie and clown’s hat after his surgery!
George is nearly seven now and is in Year 2 at school. He has some delays and learning difficulties, but he is really thriving. He tries so hard all the time, loves everyone at school and they love him. We try hard to continue creating memories together because he deserves to have fun after missing out on so much. There are so many things that I see and just feel glad that we have him. While other parents get stressed out about their children playing video games, I just can’t get mad with him. I just feel glad he is still here.
“We feel very optimistic about the future”
George still has six-monthly check-ups and scans, but he is no longer on any medication. We feel very optimistic about the future and his oncology team are pleased with his progress. He has shot up in height and has not really experienced any side effects.
George is doing really well and I’m so proud of him. He has been through so much. He has been so good during all his treatment and has put up one incredible fight. When George was diagnosed, it really helped to read positive stories so I hope our story helps other families like ours to see it’s not all doom and gloom.
“George is only here thanks to the clinical trial he was on”
There is no doubt that George is only here thanks to the clinical trial he was on. It was a horrific, traumatic time and seeing him in so much pain was awful at the time. But knowing now what he was like before he started the trial and what he was like afterwards, I would put him through it all over again. It saved his life. These clinical trials are so important. We need to keep looking for new ways to treat children who have their whole lives ahead of them…
Thank you to Roxanne for sharing George’s story.
ABOUT THE BEACON TRIAL
The BEACON trial was designed for children and young people with high risk neuroblastoma that was not responding to treatment or had come back (refractory or relapsed).
The trial investigated different chemotherapies alongside newer targeted therapies over the 9 years that it ran (2013-2021). The aims were to investigate the benefit of adding in a new targeted therapy by randomising patients to a combination that included the new targeted treatment versus more standard chemotherapy treatment. That way it was possible to see how effective the new treatments were and monitor side effects.
The chemotherapy drugs being tested were irinotecan, temozolomide and topotecan and the new targeted treatments were bevacizumab (Avastin) and dinutuximab beta (Qarziba) in the first and second parts of the study respectively.
The trial was funded by several charities including Cancer Research UK. Some of the drugs being tested have been previously studied by researchers supported by Neuroblastoma UK funding. In addition, one of our medical trustees, Dr Kate Wheeler, was on the data monitoring committee, which monitored the progress of the trial.
The first results were published in the Journal of Clinical Oncology earlier this year and showed that bevacizumab (Avastin) added to temozolomide and irinotecan improved outcome for children with refractory or relapsed high risk neuroblastoma.
The results from the second part of the study will be published soon.
Funding vital research. Saving young lives.
We fund vital research to develop new, kinder and more effective treatment for children with neuroblastoma, just like George. But we need your help. Please donate today and join the fight against childhood cancer.