George's story
George, aged three, was diagnosed with stage four neuroblastoma in April 2020. His mum Roxanne shares their story. “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’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 31 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.
Diagnosed with stage four neuroblastoma
“ 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 four 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.
George’s treatment
“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 the 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 20201, and we initially panicked when we were told he would needed 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.
Putting up an incredible fight
“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!
He’s back at nursery now and really wants to play and learn. He was so excited to wear his new uniform and he runs and gives his teachers a hug when we go and collect the other kids from school, he loves it! I actually want him home with me but he deserves to have fun after missing out on so much.
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. 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.”
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