Samuel was diagnosed with high-risk medulloblastoma, a childhood brain cancer, in February 2023 when aged five years old. His mother, Jessica, shares his story.
Life was turned upside down for us and Samuel’s two brothers when we were told he had a brain tumour. The tumour was removed in a long operation, but a few days later, we were given the devastating news that it was cancer. Soon after, we found out that it had spread and that there was another spot of disease elsewhere in his brain, making his condition high-risk of relapse after treatment, rather than the standard risk we were originally told.
This meant the treatment would need to be more intensive and would more likely have significant long-term side effects. It was a lot to take in, and we had to decide quickly whether to take part in a clinical trial, which we did. Samuel was therefore treated on the SIOP-HR-MB trial, which is looking at the best treatment for high-risk cases while minimising the side effects.
As part of this, he was first treated with two rounds of induction chemotherapy, and then was randomised to be treated with twice daily radiotherapy. At the same time as this, high-risk patients became eligible for proton beam radiotherapy in the UK. Samuel became the first child to be treated with twice daily proton beam radiotherapy. The treatment was incredibly intense, and he remained an inpatient throughout, having two general anaesthetics every day for the treatments.
Samuel suffered long-term effects from the tumour and operation and continued to vomit many times a day despite anti-sickness medications. At times, things were so bad even tube feeding didn’t work, and he had to be fed intravenously.
Much of the time, things were thoroughly miserable for him, but he worked so hard to get better, and managed to carry on building Lego, his great passion in life, throughout. During a break in treatment after proton, the doctors finally found a combination of medication he could take at home that kept the vomiting under control and after four long months in hospital he finally came home.
At his scan, following proton beam therapy, we found out the metastasis was no longer visible in his scans - a huge moment in his treatment. As part of the trial, he was randomised again for the next stage of treatment and got the control arm, so the standard treatment consisting of eight cycles of chemotherapy, given mostly in day case, but we have nights in hospital too.
Samuel finished treatment in April 2024 and is currently having scans every three months. He amazes us every day despite having suffered and had some truly bleak days, he always bounces back and pushes himself to get back to Lego and the other things he loves.
The importance of research
We’re hopeful that Samuel’s cancer will ultimately be cured and that thanks to the clinical trial he may have been spared some of the worst of the long-term effects, but only time will tell, and he won’t be considered cured until five years with clear scans. We know just how important CCLG’s work is, especially for researching effective but kinder treatments that don’t leave survivors with a lifetime of long-term effects.
When we were first told about the treatment Samuel would need, we were also informed about the list of long-term side effects it would leave him with if it was successful. As a parent, hearing that the treatment to save your child’s life is going to cause them problems in just about every aspect of their lives in future is devastating. It was also initially hard to accept. It doesn’t seem possible that there aren’t any better alternatives.
Being given the option of a clinical trial in the context of the conversation above felt like hope. It was also meaningful to us that Samuel was contributing something to science, that there was something positive coming out of such a desperately awful situation.
Research into kinder treatments is essential because we shouldn't have to accept that such brutal treatment is the only way to cure a child. There’s been so much progress made on better, kinder treatment for adults, we desperately need to improve the situation for children, who have to live with the effects for many more years of their lives.
I remember one question I asked early on that no one could answer was 'what caused this?' and the answer is that they don't know, because there isn't enough research. All I was told is that children's cancers are very different to adult cancers, they aren't usually caused by environmental factors or genes in the same way. And yet, for the most part, we are still treating them with drugs and protocols designed for adult cancers. That alone should be why everyone is talking about this, and why continuing to fund research is vital.
Inspired by this, his school held a ‘Wear It Gold’ day in September 2023 to raise money for CCLG and awareness of the need for more research into childhood cancers. I really want children and parents of the future never to have to face hearing the same things we did.
Create a better future for young people like Samuel this Childhood Cancer Awareness Month
Support us this September - your donation could help to fund vital research into childhood cancers and save young lives. You can donate online, text GOLD to 70085 to donate £3, or get involved with our campaign