My son, Toby, has a brain stem tumour. His tumour was diagnosed when he was five following a very traumatic 10 day spell in intensive care where he nearly died of pneumonia, his lungs collapsing. We had often suspected something was not quite right with Toby as he repeatedly had chest infections, but no matter how hard we previously tried it took this horrific episode for us to get a diagnosis. He is now six, very wobbly but pushing through his first 18 months of chemotherapy.
At that time Toby’s brain was miscommunicating with his lungs as a result of the growing tumour, forcing him to swallow into his lungs causing repeat, and potentially lethal, chest infections. A few months before this he had seemed a relatively normal (and tough!) third child in an everyday loving family.
When his tumour was diagnosed we discovered it was not one that can be significantly operated on as it’s in his brain stem, just at the top of his spine. It touches many of the controls for his bodily functions and so significant surgery has multiple unthinkable risks attached to it. We went down the chemotherapy path to slow the tumour’s growth before we inevitably undertake radiotherapy or chemotherapy again in the future.
Not only does Toby have this tough future ahead he has already had to go through an awful lot. In his first six months of treatment he doubled in weight and his mind was addled as he took steroids to control the tumour.
He had some of the tumour removed and had the inside of his skull scraped to give his brain more room. He was given, and still uses, a ventilator and oxygen to regulate his breathing at night. He started chemotherapy suffering the inevitable confusion and nausea. So far he’s spent 75 nights in hospital.
Toby is currently on an 18-month course of chemotherapy and we take each day as it comes. He is an incredibly brave boy, doing all that is asked of him with little complaint.
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