Simon9

SIMON JAMES BRUNTON
19th July 1982 - 18th April 1998

Home............at last!

On 4th October we left the hospital to come home full-time, although Simon was still being treated as an out-patient and receiving radiotherapy. This meant travelling backwards and forwards to the hospital every day which was very tiring for him, but at least we were at home. Before we left hospital we met a little girl called Eloise who started her radiotherapy just after Simon. Her mum Stephanie mentioned that she was finding it difficult because Eloise never wanted to come to radiotherapy. Well, Vince and Simon soon changed that and would 'race' Ellie to radiotherapy every morning! Once it had become a game Ellie didn't mind coming. They even formed a very exclusive club called 'The Blue Fingernail Gang'. Ellie adored painting her nails and she had some blue nail varnish which she wanted to put on Vince and Simon. For a few days Vince kept telling Ellie that she could not paint his nails, but eventually, he and Simon each agreed to have one nail painted. Thus, The Blue Fingernail Gang was born!

Simon chose to go back to school on the 7th October, although he couldn't go as much as he would have liked to because he still had lots of hospital appointments every week. He also started seeing a home tutor, Peter, around this time. Simon had to have an oesophageal stretch about once every two weeks to try and encourage his oesophagus to stay open enough for him to start eating. This played havoc with any routine we were trying to form! As time went on Simon increased the time he spent at school and with Peter, he hadn't lost his eagerness to please and to give his best. Simon would spend two hours with Peter, twice a week. Often Simon would have been to radiotherapy or physiotherapy earlier in the day and many times Peter asked Simon if they should take a break and Simon would reply "What for? I'm alright".

Simon continually amazed Peter, his home tutor

Simon was never one for idly sitting around, he always wanted to be busy, so we would constantly find him new challenges, like picking up buttons from a tray and putting them in a little container, this would encourage his motor skills and soon he would learn to write again. We would always mix the fun with the serious physio stuff, but if we could we would even turn that into a game. We just treasured every moment we could spend with Simon because whatever was going on, however well he seemed, we knew that things were still very fragile and could change in a moment.

Christmas '96 was spent at home with family and friends visiting us, as they knew Simon couldn't travel very much. Simon loved having visitors and no matter how poorly he was feeling, he would never let it show and upset others. In our situation we had to live life for the moment, you just didn't know when things might take a turn for the worse. We tried not to show the heartache of wondering whether this would be Simon's last Christmas.

Amy and Simon......closer than ever

In early January '97 Simon had some small lumps come up alongside the shunt pipe in his head. This terrified us and we went to the hospital, where he had to have another MRI scan. Thankfully the lumps were found to be caused by an infection and so Simon was put onto antibiotics, but it just served as another reminder of how fragile his life was. Whilst we were at the hospital having the MRI we met up with Eloise and her family again.

Something which really cheered us up was hearing that Simon had won a McDonalds Child of Achievement Award he had been nominated for back in the summer of '96. We were so pleased that his courage and determination had been recognised by others. We had been invited to an awards ceremony in London and it would mean staying the night in one of the best hotels. There was just one hiccup, Simon was due in theatre for another oesophageal stretch on the day we were supposed to travel down to London! Luckily, the awards ceremony wasn't until the day after, so although we had to go straight to the hotel from the hospital, at least Simon could get a rest before the ceremony. It was a star-studded day with 150 children being presented with awards out of thousands of nominations. We heard so many stories of courage, determination and selflessness. Simon received his award from celebrities John Leslie, Gaby Roslin and John Major, the Prime Minister. Shortly after the highs of the award ceremony, the rollercoaster of life hit rock bottom when Eloise passed away on the 17th February 1997. It seemed that slowly but surely, every cancer kid we had come into contact with was losing their battle. As much as we tried to remind ourselves that Simon was doing really well, the nagging feeling in our mind just wouldn't go away.

Simon receiving a well-deserved award for his courage and determination