Matt’s story

The Coley family had just moved to Cardiff from Surrey when six-year-old Matt started to complain of neck pain. His parents Julie and Simon were concerned as they’d also noticed that Matt’s neck was beginning to turn but felt reassured that it was nothing serious following a trip to the family doctor.

Over the coming months however, Matt’s neck got steadily worse and he was admitted to the then paediatric south ward several times for investigation. Unable to find a cause, doctors initially thought that his symptoms may be linked to the ADHD that Matt had been diagnosed with the previous year. But following an MRI scan in March 2009, Julie and Simon received the devastating news that their son had an astro sytoma – a tumour which was growing in his spinal cord and was therefore inoperable.

However, after a biopsy which diagnosed the tumour as low grade and because chemotherapy in itself could have been more damaging to Matt’s small body, his oncology team opted to watch and wait in the hope that the tumour wouldn’t grow any further.

With new medication now effectively managing his pain, Matt had a year symptom free but in early 2010, his pain got worse and an MRI scan revealed that the tumour had grown. His doctors decided to proceed with chemotherapy and Matt was admitted on to Rainbow Ward at the Noah’s Ark Children’s Hospital for Wales to begin 18 months of treatment.  Julie says: “Suddenly our life revolved completely around hospital stays and looking after a very poorly Matt while also trying to keep some kind of normality for his little brother.  The first few months of chemo were particularly intense and Matt was very sick but we got through it and most importantly, it worked.  At the end of the 18 months the tumour had shrunk to a manageable size and we were able, for a while at least, to resume normal family life.”

For four years Matt was treatment free and only attended hospital for six monthly MRI checks to ensure that the tumour wasn’t growing. But during the summer of 2015, Julie and Simon noticed that Matt’s spine was beginning to curve and that he was becoming far less mobile.  As his six monthly scan in the April had not raised any cause for concern, his oncology team referred him to orthopaedics to investigate whether anything could be done about what appeared to be a side effect of the tumour as opposed to something directly caused by it.  However, as the curve was continuing to worsen and was now causing Matt some significant pain, he underwent another MRI which revealed that the tumour had ballooned dramatically.

Matt was immediately put back on the same course of chemotherapy which had worked for him previously but just before Christmas 2015, the family were told that this time, the tumour was not responding. Matt was put on a different course of chemotherapy in the hope that it would be effective in reducing the tumour enough to operate.

Julie says: “Matt’s been through so much and he’s so incredibly brave. He lives in the moment and just takes life one day at a time.

“As a family we know how fortunate we are to have a hospital specialising in paediatric medicine on our doorstep. When Matt first started treatment, we had to take him to the adult surgical unit which was a long way from the ward we were on and we all remember those trips to surgery as tense and nervous times. Now everything’s in one place and specifically geared for children, it makes such a difference. Everything from the equipment to the facilities to the way the staff there are, is completely focussed around the patients and their families.”

Matt’s mobility was severely compromised because of the curve in his spine and he found normal physiotherapy sessions very uncomfortable. In 2016 he was referred for a course of sessions in the hydrotherapy pool, funded by the Noah’s Ark Charity as part of its £7 million commitment to the hospital’s second phase.

Julie says: “In the water Matt is just…..happy. The room is beautifully lit and warm and he can play his own music which all relaxes him. But most of all I think he feels safe and un-burdened. Out of the water, Matt can’t really do any kind of exercise and feels very self-conscious but all of that melts away when he’s in the pool.  The physios who go in the pool with him make sure he gets a really tough work out but they’re lovely and fun and they treat him like an individual so he’s keen to do it and do it well.

“Matt’s has been through an awful lot and quite understandably, he doesn’t relish the thought of going in to hospital. But the sessions in the pool are different. It loosens the tension in his muscles but it’s done more than that for him. It’s improved his self-esteem and his confidence.

“The last eight years have been difficult but the support we’ve received has made a huge difference to us as a family and most importantly, to Matt.”

Last year Matt underwent an operation to remove part of the tumour but his surgeons managed to remove it all, which came as a huge but very happy shock for the whole family. Matt has since undergone a procedure to straighten his spine and will undergo another operation soon to alleviate the tightness in his hips and knees.  He starts college in the Autumn.