Jerome was was just two when he was diagnosed with a pilocytic astrocytoma brain tumour
He has asthma-like symptoms, struggles with walking and, when playing with his two-year-old little girl, has to wear ear defenders to block his hyper-sensitivity to movement and sound. Yet, doting dad-of-one, Jerome van Leeuwen, knows it’s all in his head – because he is, and has been since a toddler, living with a brain tumour.
Jerome underwent gamma knife surgery on the remaining tumour – a procedure during which the tumour cells receive a dose of radiation to halt their growth. Two years later, Jerome and wife Wendy decided to leave the polluted air of his native Netherlands to settle in Scotland, where the cleaner atmosphere and joys of the countryside eased those asthma-like symptoms that left him struggling for breath.
This in itself, he says, is exhausting, and contributes to his extreme fatigue. His body has to work extra hard to remain balanced when he’s active, and the tumour makes it more difficult to process information. “Basically, when you have a brain tumour, everything is a balancing act between up-sides and down-sides,” admits Jerome, who settled with wife Wendy in the Fife town of Methil, which means he’s close to the world-renowned Edinburgh Cancer Centre and its gamma knife technology expertise in the event that his tumour should begin to grow again.
Always keen to explore new options, Jerome participated in the study in the hope of improving not only his own quality of life, but that of others who are living with a brain tumour. Jerome, whose tumour cells remain dormant thanks to gamma knife surgery, now receives two-yearly check-ups.
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