A sister's story

A sister of a patient tells her story

My brother is 17 now. He was diagnosed with a craniopharyngioma tumour when he was 2. He had apparently had the tumour since birth, but wasn't picked up on till he was 2, and was in some visible discomfort.

He had his first operation at Walton Hospital in Liverpool, and spent 6 weeks in there. We've always had a somewhat dysfunctional family, and this illness didn't exactly bring us all together. In our house Mum has always said she has 3 children, me, David and his illness. I used to get so jealous of David and the attention he got; he would have presents for no reason, and would get people asking about him all the time. What I never realised was that they were asking about him because he had a serious illness, and they were giving him presents to make him feel better when he was in hospital. The presents were never really opened though, because when he was in hospital he was asleep half the time, the rest of the time he was being given medication or having operations. In the space of 6 weeks he had had 3 operations. He must have felt dead to the world, but being 4 years old I didn't really notice.

The first operation was to remove some of the tumour. The 2nd and 3rd operations were lumbar punctures. He came out after 6 weeks and things weren't "normal" ever again. At the age of 5 he had radiation for 6 weeks, (prior to this having a shunt fitted into his brain) travelling from Shrewsbury to Liverpool everyday, to have the radiation, and then going home. He missed so much school, but was one of the smartest boys you would ever know. Mum and I were talking about it today, she told me a story how she had been reading with me at our dining room table, and I had been struggling with the word "and", she could see that I was struggling and getting frustrated, so left the room (this happened when David was 2, shortly before he was diagnosed with the tumour). I then said "Dairy, what does this say?" and David got up from where he was sitting and came over. He lent over the book and said "and", very matter of factly. He was one of the smartest, imaginative, inquisitive boys you could ever meet. It makes me so angry that something like this could happen to a little boy with such a bright future ahead of him. He can't ride a bike, catch/kick a ball, and bounce a ball. He can't do things a boy his age SHOULD be able to do, because of the illness, plus tumour damaged his eyesight, so that he is registered as severely partial sighted.

Our Mum is the most brave, supportive, lovely, kind, generous woman you could ever meet, and will be there for everyone except herself. On my 12th Birthday her marriage broke down. Our family was broken apart by David’s illness.

Since the age of 7 David has been in and out of hospital so many times that I’m surprised he doesn't have his own room there. There are positive things that have come out of David having this illness. We have met some absolute legends, who we will always be grateful to, and we have realised who our true friends are, and are in debt to them.

One of David's operations went wrong, so he got epilepsy from it. This was never really an issue, until August 2007. I was on my computer, it was about 11pm, and I heard this banging, I thought it was just the wind, and thought nothing of it, and then Mum ran into my room saying David was having a fit. We ran out of the room, and I had no idea where he was. Mum said he was trapped behind his door. David has the box room of the house (not ideal for a 16 year old with problems) and had collapsed behind it, so we couldn't open the door. Mum said that he had gone into her room saying he felt sick, Mum had said to him leave your door open, but he didn't and the next thing you know he's having a full blown fit. Mum sat behind his door gently talking to him, we could hear his whole body bashing against the door, and were sure he was banging his head against the wall. I was so scared I went and hugged the dog. After about 10 minutes it gradually wore off, Mum was able to push the door open, and David had stopped the fit. He was still in a ‘trance’ though. I went and got a glass of water, and he drunk that. Mum then helped him into bed. As you can imagine we didn't sleep for the rest of the night. Next morning though was the day his GCSE results came out and David did not remember, and was out of it for most of the day as he couldn't remember a thing. Mum phoned the epilepsy nurse, and she said that we should've phoned the ambulance, but we didn't know this. In October 2007 it happened again, this time it was me that noticed it. We were all in bed, and it was about 11pm again. I was just going to sleep when I heard this really loud snoring; it carried on for about 3 minutes, until I couldn't stand it anymore. I thought it was the dog, so I was all set to go storming into Mum's room, but when I got on the landing, I realised it was coming from David’s room. Quickly realising what was going on, I pushed open Mum's door, and yelled that David was having a fit. She leapt out of bed and went into his room. It lasted about 5 minutes, and Mum phoned the ambulance, and a neighbour. By the time the ambulance came David had stopped fitting, but was still in a ‘trance’. They stayed for about 15 minutes and left. About half an hour later I was going to bed and standing outside David's room, and he said to me, “What have you opened the door for, shut it." I looked at him and said, “What?” He said, "I closed my door when I went to bed, why have you opened it?" It dawned on me, he didn't know anything. Mum and I had to tell him about the fit, and the ambulance, and it took him some time for him to believe us.

With his fits we can make light of some of them, and we all have a laugh, so it isn't so depressing.

David is now 17. The doctor's told Mum that he wouldn't live past his 10th birthday. If he wasn't around today I don't know where I would be. He is my hero, and I love him so much. If it weren't for him I wouldn't know the word "and". He has achieved so much. He got 7 GCSE's, he has a first aid certificate, he goes to college, but is moving in September to a more suitable course, and has got through being bullied at school. He goes to the gym about 3 times a week, and is losing his ‘fat’ and gaining muscle. I am so proud of him. I won't ever forget the scared feelings when he was having operations, or the angry feelings towards the illness, but for the here and now, I focus on the happy feeling, that David is still around.