Sean’s story: Travel for treatment was very costly

Sean was diagnosed with Burkitt lymphoma in January 2014 when he was just five years old. The family had to travel from Perth to Edinburgh for treatment – an 80 mile round-trip. Mum Amanda explains how the diagnosis and travelling so far away from home had a huge financial impact.

“We’d had a few trips to the doctors as Sean had been unwell. The GPs kept telling us it was constipation – he was even prescribed three different types of laxatives but they didn’t help. On our last appointment the GP pushed for us to be seen at Ninewells hospital in Dundee. Sean’s dad took us through to A&E there, where we spent two hours in the waiting room. Sean ended up falling asleep as he was exhausted.

“They wanted to keep Sean in overnight and had sent him for an x-ray and an ultrasound. The doctor from the ward came along to the scans, which I thought was a bit strange, and he was asking all sorts of questions but I wasn’t sure if this was just standard.

“After the ultrasound, Sean was taken to a side room straight away. I was taken into a small room and told that they thought it was cancer. We would have to be transferred to Edinburgh Sick Kids hospital within the hour.

“We were blue lighted to Edinburgh in an ambulance. It was an awful journey; we were bumping about all over the place. It turned out later that the suspension had actually gone in the ambulance! Once we got to Edinburgh we still had to wait and go through A&E before we could go onto the ward. By this point it was nearly midnight, and we were being asked millions of questions. The doctors were talking to me about percentage survival rates already – in front of Sean. This wasn’t nice at all, he was just five years old and didn’t understand what was happening.

“I spent the night with Sean on the ward and my dad was able to stay in a room next door. Sean had to go into theatre the next day for a biopsy and was then put onto life support. He was in theatre for hours, and then had to go into an induced coma to let his body rest. There was a machine doing his breathing for him, it was just awful.

“I still can’t believe he had been at school just the day before. The doctors told us that we had caught the tumour in his stomach just in time. Even a day later would have been too late and he would have died. After intensive care Sean was moved back to the ward and we were in Edinburgh for the next three months.

“When Sean started his chemo, this just sent him straight downhill. He needed to re-learn how to walk as it left him so weak and he lost so much weight. I even had to get him a stroller as he was unable to walk anywhere far.”

While in Edinburgh, Amanda stayed at CLIC Villa, free accommodation provided by CLIC Sargent.

“It was a relief as Sean’s older brother Ryan was able to come and stay too, and he could visit Sean on the ward as he was old enough. Even when we got home at the weekends, CLIC Sargent kept our room at CLIC Villa as they knew we would be back.

“Our CLIC Sargent Social Worker helped us fill out forms for things like disability benefits and funding we could apply to, to help with the financial side of things. When you’re in the hospital so many different charities come in and talk to you about the support they offer, which is great, but it’s all so much to take in. the minute they leave you can’t remember who they were or who gave you which leaflet. Our CLIC Sargent Social Worker helped us sort through it all and make sense of it.

“Travel was getting really expensive and difficult – I don’t drive so we relied on Sean’s dad and public transport. The costs were adding up. Sean’s dad was constantly putting fuel in the car as we always had to find our own way to the hospital. When we were at home we were getting up in the middle of the night to go to Dundee if Sean had a temperature. His brother Ryan was only eight and I had to wake him up at midnight to drop him off at my mums every time we went. It was so hard. We just had to take every day as it came, we couldn’t plan ahead for anything.

“We even got in trouble for using public transport from the doctors. They said we should be using taxis as there would be less chance of picking anything up, but it was so expensive. The bus could be awful though, Sean had his nose tube in and was so thin in his stroller, so people would stare.

“Travel for treatment for us was very costly. If it hadn’t been for CLIC Sargent helping us out we would have been totally stuck. It’s hard enough going through your child having cancer – you don’t need more stress on top.”

Sean’s treatment lasted until May 2014. After chemotherapy ended, Sean had to return to Edinburgh for regular check-ups and scans, as well as physiotherapy. Sean had his first all-clear in July 2014 and was recently given his five year all-clear.

Amanda is backing CLIC Sargent’s call for a Young Cancer Patient Travel Fund. Sign your support to ask all party leaders to commit to the fund if they become the next Prime Minister.