Larsen's Story

Larsen was a kind, intelligent and beautiful boy. He loved all animals, David Attenborough, going to school and watching movies. Larsen dreamt of being a zookeeper when he grew up so that he could look after big cats, his favourite animals of all. But devastatingly, Larsen never had the chance to fulfil his dream.

Like many other children, Larsen’s brain tumour was missed and misdiagnosed for a long time before an accurate diagnosis. He was misdiagnosed with a lazy eye, patched for hours every day, for months on end. He was misdiagnosed again with benign Optic Pathway Glioma, put on observation, and treated with the wrong chemotherapy. Eventually, over a year after we first noticed that he couldn’t see, Larsen had his tumour biopsied and was delivered a devastating diagnosis. He had an extremely rare – around 10 known cases globally – peripheral medulloepithelioma. There were no known survivors of this type of tumour and more importantly, there was no treatment protocol. 

At just four and a half years old, Larsen endured 11-hour brain surgery and lost his right eye completely. We had to prepare him for the likelihood that he would wake up blind. Thankfully, he didn’t, and the surgery went as well as it could have, and a full resection was confirmed. We really thought he would be OK. We were elated; euphoric.

But within days, the side effects spiralled. He was in hospital with hydrocephalus. Meningitis twice over. He needed a shunt fitting. When he finally came home, he endured more treatment, daily radiotherapy for six weeks just as he started his first year at school. Larsen was so brave and so brilliant, he aced radiotherapy, managing without anaesthetic and he aced school as well. But the follow up MRI, whilst showing that the radiotherapy had worked, showed new tumours growing on the top of his spine.

The delays to Larsen’s accurate diagnosis had allowed his tumour to grow so far along the optic nerve that it was impossible to remove as a whole and had to be picked apart and scraped out. Twelve months earlier and it could have been plucked out. The cancer cells had spread and grown elsewhere and this time there was no surgical option. Larsen was treated with an unknown chemotherapy protocol. It was the most shocking and awful treatment, unimaginable to any parent. And it was this chemotherapy, which wiped out his platelets and prevented his blood from clotting, which led to the brain haemorrhage that he would never wake up from.

Larsen died aged just five years old at Nottingham Children’s Hospital at Christmas 2019 and whilst his tumour was extremely rare, the missed diagnosis, life changing surgery and barbaric chemotherapy treatments are not. Around 500 children are diagnosed with a brain tumour in England and Wales every single year and many of them experience very similar journeys. 

Larsen’s Pride exists to bring courage and comfort to children stuck in hospital, undergoing terrifying surgery and awful chemotherapy, with the beautiful big cats that kept Larsen company.