Simon5

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

The operation and treatment

On 2nd April 1996 Simon went to theatre to have the tumour removed, the staff said it would take four hours. Vince and I were terrified, we walked around like zombies trying anything to make the time pass faster. The staff moved Simon's bed from the end of the ward to a place right opposite the nurses station because when he returned from theatre they would need to keep a close eye on him, that's if he didn't go into intensive care straight from theatre. While they were moving his bed they accidentally broke Simon's Mickey Mouse lucky mascot that he'd got from his great-aunt Eve, they bought us the shattered pieces in a cardboard vomit bowl whilst Simon was still in theatre. I was horrified and took it to be an omen, especially as it was now five hours after Simon had gone to theatre!

As it was we had to wait another hour before we got a call to go to the theatre recovery room because Simon was waking up and no-one could understand him. He'd had his hearing aids taken out before the operation and now he couldn't hear anything. We went down to recovery and were horrified to see Simon with about a dozen different tubes coming out of his body, including two coming out of his head. Normally parents wouldn't see this sort of thing unless the child was in intensive care. We never ever did let Simon see how frightened we were, he needed to be surrounded by positiveness. We comforted Simon as best we could, but it was so difficult because we couldn't get near enough to him to give him a cuddle, all the machines and pipes got in the way.

We eventually got Simon back to the ward, where we looked on as the staff kept a close eye on him. We were there every minute of the day and night, there was always one of us with him at all times. Mainly because in his post-operative state no-one else could understand him, but also because we couldn't bear to be apart. After the operation Simon seemed to sleep for days and days, we had nothing to do but wait and be there whenever he woke up. The sense of helplessness was overwhelming, it was so frightening to know that we were so powerless, that nothing we could do could make it better.

It was at this time that we met a beautiful little girl called Kelly, who was just a couple of weeks from her third birthday. The first time we saw Kelly she was standing beside her bed, dressed in a lovely sunshine yellow dress. She was attached to the biggest bag of fluid we'd ever seen. We decided then that if a little tot like Kelly could go through chemotherapy, then our Simon could as well. We soon found out from Kelly's mum, Sharon, that from the moment Kelly entered the hospital each time for her chemotherapy, she very rarely spoke to anybody. This was until Vince worked his special kind of magic on her, then they would be waving at each other through the curtains and even looking at books together, chuckling. Also, Kelly very rarely ate in hospital and would be given nourishment through a nasogastric tube, but Vince soon introduced her to the delights of jaffa cakes!

With our special little friend Kelly

Over the following two weeks Simon slowly improved and began talking to us again, even then his attitude was one of cheerfulness and we would laugh and joke. Then one Saturday night Simon had a fever, his eyes were rolling and we had the doctors in and out all night. In the morning the neurosurgeon decided that Simon needed an urgent scan, so we rushed him down to CT scanning. The neurosurgeon came up to see us straight after the scan and decided that Simon needed an emergency operation to relieve the pressure in his brain. You see, they thought that by taking away the tumour, it would make way for the fluid to flow around the brain as usual, but it hadn't and now Simon was desperately ill.

They couldn't fit a shunt because he was too poorly, but they had to get in there and relieve the pressure, quite a straightforward operation apparently. Huh! Nothing about this whole nightmare had ever been straightforward. Anyway, the surgeon called in an emergency team and Simon was taken to theatre again. We waited hours and finally, before Simon was back from theatre, the neurosurgeon came to see us. He took us into the now dreaded 'office' and sat us down, he began explaining the procedure he had intended to do, but said that when he got inside Simon's head he found some more suspect tissue. (Oh God, how much more did Simon have to suffer, just how much more did we have to take?)

The neurosurgeon said that he had been unable to get a sample of the suspect tissue, so he couldn't tell if it was related to the original tumour. This suspect tissue was in the front part of the brain and not at the back where they had removed the tumour. He also told us that Simon had an 'infection' and would have to be put on great doses of antibiotics until the infection had cleared up. We later heard some staff talking and found out that Simon was actually suffering from bacterial meningitis! There is such a lot that could be done to improve communications in these types of situations. We had realised a couple of days after the operation, that the infection/operation had again affected Simon's speech and coordination and that he could hardly talk to us or move. Simon was on huge doses of antibiotics four times a day for the next sixteen days. It soon became clear that after a couple of doses of antibiotics through his cannulas, that the veins were suffering, so they had to keeping finding other sites for the needles. There wasn't a place left on his body where they hadn't tried to put a needle.

Too sleepy to realise he'd got a special Easter visitor

We had, by then, been told that his brain tumour, a medulloblastoma, had been found to be malignant, so he would need to undergo chemotherapy. We were absolutely terrified about how Simon's weakened body would cope with the chemotherapy drugs.

How could we tell Simon he had cancer, he couldn't even talk to us! We didn't want to tell him unless we knew that he could talk to us about his fears. We imagined what torment he would be in if we told him and he couldn't speak to anyone about it! We were then told that Simon would need the shunt fitted after all, but that he couldn't go to theatre until the infection had cleared. The Oncology team were also waiting to start Simon on his chemotherapy, but they had to wait for the infection to clear, the shunt to be fitted and then a hickman line to be fitted into his chest before they could start the treatment. So Simon was bombarded with antibiotics and as soon as the results showed cleared he was whisked down to theatre to have his shunt fitted, that was on a Tuesday and on Thursday of the same week he was down in theatre again having his hickman line fitted. On the Friday he started his chemo, which everyone assured us wouldn't really affect him for about a week, so how would we like to take him home for the weekend?