Harry Salm was just five years old when a large medulloblastoma was discovered in the back of his brain. His mum, Vicki, shares how the treatment Harry received has left him with lifelong impacts and why she is supporting our work this Childhood Cancer Awareness Month to find kinder treatments for children like her son. You can help too by donating today.
Vicki shares his story...
When you hear the words “your child has a brain tumour”, your world shatters in an instant. No parent ever imagines being in that position, and yet, in 2022, when our little boy Harry was just five years old, those words became our reality.
Harry a week before his diagnosis with his new baby sister, Millie
Harry had always been a bright, energetic and social child. He wasn’t unwell – not in the way you might expect from such a serious diagnosis. He had a few minor symptoms, but nothing that screamed ‘brain tumour’. On 8th February 2022, our lives changed forever. Harry was at school when, out of nowhere, he sat down in class and suddenly became paralysed. What started as confusion quickly spiralled into panic. After a long and frightening wait in A&E – made even harder as, due to the COVID-19 pandemic, only one parent could be with him – we were told Harry had a large mass in his brain. It was later diagnosed as a medulloblastoma, a cancerous brain tumour, complicated by hydrocephalus. Within hours, he was rushed into life-saving surgery.
The trauma of that moment is something I will never forget: carrying my little boy into the operating theatre, kissing him and whispering how much I loved him – not knowing if those would be my last words to him. We sat in the children’s hospital reception, holding our 14-day-old baby, Millie, waiting through the longest 13 hours of our lives.
Harry and Millie
Although surgery saved Harry’s life, the following day we faced another cruel blow. He developed Posterior Fossa Syndrome, leaving him unable to walk, talk or even sit up. Our little boy, who just days earlier had been running around and chatting away, was now silent. We missed his voice so much. In time, it did return, but it was different – flatter, altered in tone, a constant reminder of what had been taken. For more than a year he was tube-fed, at times unable to even tolerate water, and we faced long, exhausting hospital stays.
A scan showing the brain tumour which the family called ‘The Goblin’ and Harry in hospital
The months that followed were gruelling. Harry underwent proton beam therapy in Germany and chemotherapy back in the UK, both of which took a devastating toll on his tiny body. His weight dropped to just 16kg. The once lively boy who loved climbing trees suddenly struggled with even the simplest of activities.
Harry with mum Vicki, dad Andy and Millie during his treatment in Germany
Harry is now eight. He has made incredible progress, but every day is still a battle. He tires easily, his balance is wobbly and he often falls. He continues to take anti-sickness medication for ongoing nausea. Most heartbreaking of all, Harry notices the differences between himself and his peers. While they run, chase and play, he often finds himself left on the sidelines – not by choice, but because his body and brain won’t always let him join in. As a mum, watching that unfold is indescribable.
The side effects of treatment stretch far beyond the tumour. They touch every part of his life – his hormones, his spine growth, the enamel on his teeth, his immunity and his cognition. Harry now lives with an acquired brain injury. While we celebrate every milestone, there is also a silent grief. A grief you hide to protect him from – the grief for the opportunities, choices, and carefree childhood moments cancer has stolen.
This Childhood Cancer Awareness Month, I share Harry’s story not only to honour his strength, but to shine a light on the reality so many families face. Brain tumours don’t just affect the child diagnosed – they change everything. They alter the present, the future, and the dreams of an entire family.
Harry is here, and for that we are endlessly grateful. He is brave, resilient and so deeply loved. But behind every smile is a reminder of the battles he’s fought and the challenges he will continue to face. By telling his story, we hope to raise awareness, to push for better treatments, and to remind other families that they are not alone in this journey.
Mummy and Harry
Research we are funding at our Centres of Excellence will help us find kinder treatments for children like Harry. At our Centre of Excellence at Queen Mary University of London a team co-led by Dr Sara Badodi and Dr Sindhuja Sridharan is working to build a more complete picture of how these paediatric tumours work. They are leveraging their expertise in epigenetics (the study of how genes are turned on or off) to uncover genes vital to these tumours, aiming to develop innovative, gentler therapies with fewer side effects for children diagnosed with these aggressive brain tumours.
You can help support this work and research taking place across our network of Centres, getting us closer to a cure for all types of brain tumours, by donating today.
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