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I was born in August 2002, and was a very happy cheeky little chap especially as I got older, and Mummy would hug me and call me her’ wild child’.
I had lots of fun with my big sister Jemma who thought she was the boss but we knew who was really.
At the beginning of December 2004 I began to start talking with a funny nasal sound and my Mummy & Daddy took me to see our doctor: he said that I had a nasal infection and gave me some medicine saying that if it did not get better then to go back after Christmas and he would send me to a speech therapist.
My nose continued to be runny so on the 16th of December the doctor gave me some antibiotics to try and clear up the infection – but it did not work.
We had a great Christmas as well as all the toys we had a new baby sister Jessica. Jemma tells everyone she meets that we are a ‘real little family’ and we have great fun in the supermarket trolleys –me in the front, Jemma behind and Jessica in her chair on the top.
When I woke up on January 4th the right side of my face was not working and Mummy said it looked paralysed so we went to the doctor – he said it was Bell’s palsy, and he rang another doctor at Alder Hey Hospital who said to monitor it for one week and if it had not cleared up then I would have to go and see him.
So I went to nursery and as always had a good time, after about three days my eyes stopped blinking and became very sticky so Mummy took me back to the doctor and I went to see Mr. Chandra at Alder Hey the next day.
Wednesday 12th of January was my first visit to Alder Hey, the doctor specialised in eyes and he said that my eye was fine but we had to keep it moist and I had to have eye drops and ointment every two hours. He arranged for me to go to the A/E department so that I could be given a full check up – they could find nothing else wrong with me but said that they would like me to see an ENT surgeon as soon as possible.
I went home, kept on going to nursery, playing with Jemma, and eating my favourite things and drinking lots of nice juice. Having palsy did not worry me because little boys do not look in mirrors, but I could sense that everyone else was worried
I had to go back weekly to see the eye doctor and he got me an emergency appointment with the ENT surgeon on Monday 24th of January. I saw a very nice doctor called Tusca who said that he could not find any reason for my palsy and arranged for me to have a CT scan as soon as possible, and the earliest one available was 14th February.
I kept going to the nursery and could hear Mummy saying that the palsy was better after I had been up for a few hours and that my voice was not as good as when I first started to talk.
Towards the end of January I started leaning towards the left hand side and I would lose my balance at the slightest movement, it frightened me, and I could not chew my food properly. Mummy asked the doctors about this and they said it was probably the palsy and they would know more after the CT scan, which was still a fortnight away.
On Saturday the 29th of January in the early afternoon I was eating my sandwich and suddenly started to choke and collapsed on the floor. My Daddy tried to remove the food from my throat and I was going blue, Mummy phoned the ambulance and it came very quickly, my eyes kept rolling and I was getting bluer and bluer it frightened me very much .My Daddy managed to get the food out and the paramedic man helped me to feel a little bit better. As I had been vomiting the man said that I would have to go to the hospital for a check up, but I felt very tired and he said that, as my airway was clear I could go to sleep and I could go to the hospital on Monday.
Over the rest of the weekend everyone kept watching me very closely, and when I saw Tusca again on Monday he said that my gag reflex was weak and we would know more after the CT scan.
I continued to play with Jemma and we had fun, I liked being Bob the Builder and she was a princess. Every time I had something to eat Mummy and Daddy watched me very carefully, I think they had been frightened as well.
On the Saturday before my CT scan I began to lock my left leg when I was walking, Jemma and I pretended it was a game and she copied me.
When we went to the hospital for my CT scan I had to have a general anaesthetic, whilst they put me through a long machine to look into my ears. I went home about two o’clock and that night Daddy noticed that my hand was shaking, Mummy said it was probably the anaesthetic and not to worry.
I did not get any better and started to vomit in the mornings so Mummy rang Mr.Clarke the ENT surgeon and he said that he would find out the results of the CT scan and she was to take me back to the hospital on the 21st of February. Two hours later Mr.Clarke phoned my Mummy and told her to take me to the hospital as the CT scan showed that I had a swelling in my head and he had booked me in for an MRI scan the next day.
I was admitted to the hospital that Thursday afternoon, everyone was really nice and the nurses made me comfortable. My Daddy stayed with me all the time.
The next day I went for the MRI scan and the ‘sleepy’ doctor called Rob woke me up and told my Mummy and Daddy that a neurologist was going to come and see them as things were not good and they must prepare themselves for some bad news.
Mummy and Daddy were very upset as they accompanied me back to the ward, and Pauline the sister asked them if they understood what was happening, Mummy burst into tears and said ‘Has he got a brain tumour’? Pauline just nodded.
We were moved into a large private room, and a man called Alan Hewitt came to see us but my Mummy and Daddy were too upset to listen to him. Another man called Neil Buxton came and he said that the tumour was in the brain stem and there was no choice but to operate, and if he did not do this I would not live for very long. They just started to cry.
I could not go home, I was given some medicine called steroids, which would shrink the tumour before the operation.
There were two beds in my room one for me and one for my Mummy and Daddy, everybody came to see me, and brought me lots of nice things to play with. My sisters came to see me, Jemma and I played in the big ward but Jessica was too small.
The operation was planned for Wednesday 23rd of February and in between that day and my admission Neil and Alan came to see us lots of time and people were always asking questions.
Daddy brought my Bob the Builder tools so I could mend the hospital because with the steroids I was almost my ‘old self’ again – my Mummy’s wild child!!
I thought that I would be going home again very soon, the hospital was alright but I had mended most of it by then and wanted to get on with all the work at my house, and to play with my sisters.
I never went home, Mummy and Daddy took me to the operating theatre early one morning, I heard Mummy say it was twenty five past eight and then the ‘sleepy’ doctor man talked to me and Daddy held on to me very tightly and I drifted off to sleep.
That was a very long day for everyone, especially Mummy and Daddy as they were at something of a loose end waiting for news about me, and all the family had been told not to get in touch until they phoned them.
For the surgeons it was a long day as well but they were busy working on my head so I do not suppose they noticed the time passing.
Eventually at five thirty in the afternoon the surgeon rang Mummy and Daddy and told them it was obviously taking them much longer than anticipated but things were going well.
I came out of theatre at eight o’clock in the evening and went straight to the scan room so that they could see if they had got all the tumour out, after that Neil spoke to my Mummy and Daddy and told them that he had taken away 96% of the tumour. He told them that I would probably be blind and deaf on the left side of my body, and at this stage they were unsure about my swallowing and voice control.
Mummy and Daddy were allowed to see me at nine thirty that evening.
I was in the intensive care unit and later that night I opened my eyes and there were Mummy and Daddy smiling down at me. There was a nurse called Karl and he spoke to me so nicely and told me about everything he was doing.
I had a pipe in my throat that was attached to a machine that helped me to breathe. The next morning I decided that I did not like it very much so the doctors allowed me to try breathing on my own, this was very difficult but I struggled on and managed to maintain my airway and was coping very well. On the afternoon of the third day after my surgery I was transferred to the High Dependency Unit.
During the first night there I became distressed as my left lung was filling up with fluid so they took me back to the intensive care unit, as they thought I was developing a chest infection.
The doctors decided to put me back on the machine that was helping me to breathe so that I could save all my own strength to fight the infection. This went on for a few days and I seemed to drift in and out of sleep whenever I woke Mummy or Daddy was there.
After a few days the doctors decided it was time to see if I could breathe on my own again, but I only coped for six hours before my airway allowed the secretions to go into my lungs so they kept me in the intensive care unit.
By this time a whole week had gone by since my initial surgery and the doctors spoke to my parents as there were some big decisions to be taken.
They knew that the tumour that they had removed was malignant and they were waiting for confirmation about the type of tumour before any progress on further treatment could be made and whilst we waited for the results they wanted to ensure that my airway was given every opportunity to be safe and they asked Mummy and Daddy if they could perform a tracheotomy, so that the nerves on the left hand side of my face could be rested and also because I was unable to chew or swallow they would give me a feeding tube directly into my stomach.
Mummy and Daddy were told that both these procedures could be reversed again in about six months. Whilst they decided what to do I had to have a lumbar puncture to see if any of the cells from the tumour had gone into my spine.
I went back to the operating theatre and had the two procedures performed; when I woke up I was much happier as there were no more tubes or pipes in my face.
The next morning I was put on an oxygen ‘T’ bar and allowed to breathe on my own, I had to have the secretions from my throat removed by a suction machine and it made a noise like a motorbike. I like motorbikes.
I knew I was getting better because Jemma came and we coloured in together and played peek–a –boo, but it made me tired and so she went away again so that I could sleep. Later on I watched the television and even got a cuddle from Daddy, which was fantastic.
Mummy helped the nurses to keep my ‘Trachi’clean and to feed me through my tube, at first she kept spilling it but I knew she would get used to it.
Mummy and Daddy seem to be smiling today, I did not realise that they were unhappy until now.
That night they put me back on the machine for a little while and they are going to let me try to breathe on my own for longer everyday, I just used to do it before.
Suddenly I was not very well again and my temperature had risen very quickly and Mummy and Daddy looked worried, the nurses took lots of blood to test to see if I had another infection. During this time I had a little help with my breathing but after about six hours my temperature came down and I began to settle again.
Two weeks after the operation there was still no definitive diagnosis about my tumour and the doctors told Mummy and Daddy that as soon as they knew anything they would let them know.
At the beginning of the next week we met a very nice lady called Alison who was going to teach Mummy and Daddy how to look after my ‘Trachi’. My feeding is going well but I passed some blood in my urine so I am back on antibiotics and everyone seems concerned because I have not poo’d for ages.
I am starting to get use to this new life and can be a little bit cheeky with Mummy and Daddy even though I have not got a voice, and keep trying to take my leads off.
Daddy stays with me all the time, all the nurses say he looks really ‘rough’ but that is because he is here sixteen hours a day, the nurse told him what I did during the night – I woke up at 03.00 hrs and wanted to paint and she tried everything to settle me it was no good and I started playing with the Oxygen saturation monitor and she said I was a cheeky chappie, that made Daddy smile.
Mummy keeps talking about Ronald McDonald house they seem to be there for some reason, I get too tired to understand.
Today I was referred to the team of people who have to make sure that Mummy and Daddy are fully trained to take me home, and they have to pass a test to make sure they can do it - no fear.
I am smiling now because Mummy says that Jemma is coming to see me after school, and she can come more regularly. Some of the rest of the family can start to come again as well.
I get a bit bored and the cannula in my arm is a nuisance, the doctors keep hitting me with needles to try and get blood from me, Daddy got really cross with them and said - No more – so they have arranged for me to have a ‘Brovac’ line put in, and I have to go back to the operating theatre for that.
While I was in theatre they changed my ‘Trachi’ tube as well – but the problem now is that they told Mummy and Daddy that I will need to have it kept cuffed, which means I will be unable to talk.
Maybe everything will settle down and in a few months all these things can be reversed. The really good news is that and the end of all this I am breathing on my own.
Just as I start to think I am getting out of here something else happens – I did a long stint off the ventilator yesterday and this morning I was very sleepy, Mummy got really worried as the side of my head where the stitches are started to swell and my head is getting bigger and bigger, so the doctors decided that I needed another scan, they tried to get me to feel drowsy, but I know what they are up to and they had to put me to sleep in the end.
Sleeping is really nice as no one tries to put needles in you or make you do things that are uninteresting. Waking up is nice as well because just for a split second you think everything is the way it was before I came here – but then you realise it is not.
The scan result came back and showed that I have fluid in my head, the doctors drained it off but just three hours later it was back – so now they are all having a think about it – that is what adults do – they think.
It is now day 15 since my operation and everyone is agreed that I need to go to the HDU and they are going to change my feeding pattern. Feed does that mean I get something to eat – the strange thing about this ‘very poorly world’ is that nobody has any juice or butties.
Things are getting better and I am to move to a normal ward tomorrow, but still no news from the histology people, a man called Barry Pizer says it may be tomorrow, Mummy says he knows what he is talking about. So we will wait and see.
Daddy was not here first thing as usual, probably because I am doing fine but then the’ Barry thing’ man came and spoke to Mummy. She seemed frantic but he would not say anymore until Daddy came back and then suddenly there he was.
The ‘Barry man’ took Mummy and Daddy away with one of the nice nurses; he told them that the outlook for me is very poor and they would do whatever Mummy and Daddy wanted them to do.
It was agreed that I would be going home.
I am on my way to another ward now, in order to get ready for going home in a few days, but everyone is still fussing .I can see that Mummy has been crying and Daddy does not smile as often.
All this movement makes me feel dizzy but then I go to sleep again and things are OK for a little while.
I have this fantastic chair that I sit in, it makes me feel normal as I can see what is going on all of the time, I have been taking trips around the hospital, it is very big place and full of children - I hope they have had a nicer time here than me.
Lots of people are coming to see me even granddad Owen arrived and he is in the war.
I am so looking forward to going home I remember that my bedroom is wall papered with Bob the Builder.
Jo the nice nurse said I could take the magic chair home with me - yippee it is so much nicer than being in bed all of the time. I cannot wait to see my house again – then things will be all right.
We came home in a taxi, it was really strange because all the bumps hurt, not like when we used to come home from the supermarket in Mummy’s car.
Our house looked very very big after the room in the hospital but there are a lot of things there from Alder Hey, Mummy says that’s because she needs them so that her and Daddy can look after me.
Gosh I am tired, all the excitement of coming home has worn me out- but it is nice to see my old toys again and my workbench and my garage.
I went in my magic chair to meet Jemma from school she was so excited, I was too but of course I cannot speak so I just had to wave my arms and then Mummy had to use that suction motorbike thing on my ‘Trachi’, Jemma thinks it is fun so it must be OK.
After all that I was exhausted and I had quite a settled first night at home, but Mummy did not as for some reason she slept at the bottom of my bed.
Home has changed nobody eats or drinks anymore like we use to, everyone comes and plays with me, but there are no butties or juice.
I have had a few trips out to see animals, Jemma was running after the chickens’ I wanted to do the same but my legs do not want to help me. Then we played ‘Hide the Orange’Jemma could not see it but I knew exactly where it was and waved my hands to tell everyone and they all laughed it was good fun.
Just when I was beginning to think that life was a little boring with all this suctioning and tube feeding, Aunty Jo sent me a quad bike – Daddy and I went for lots of rides in the garden it was so much fun, and I want to go on it loads and loads.
People keep coming to see me some of them I do not really know, others are my soul mates who have always been there for me – there is a lot of talking goes on in the kitchen but I cannot hear properly and besides there is always someone to play with me or I can watch all my favourites on the television.
I have this great place in the house – a table where I can sit at the table and play with my garage with all of the people who love me.
I have not seen very much of my baby sister Jessica but I suppose like me she just sleeps most of the time, and like me she cannot talk, but Jemma makes up for us both.
My great grandma came from Scotland and cooed at me, she looks almost as old as Snowy my great granddad here in Liverpool, but her hair is not as white as his.
I have been at home about two weeks some of the nurses from the hospital seem to be here a lot. I have started to loose my balance.
Mummy and Daddy take me out as often as possible, but everywhere we go no one eats there either. They took me to Aunty Jo’s but we had to come home very quickly as I was vomiting and felt panicky, so Mummy has changed the feeding pattern and that seems to be so much better.
I sleep better now during the night, but Daddy is usually there at the end of the bed, trouble is if I am awake I cannot tell him so I lie here in the dark and remember Bob and all the fun things he does with his tools, Daddy needs some rest and I wish I could tell him that knowing he is there makes me feel safe.
Alison came today to change my ‘Trachi’ she let Daddy do it, there was some bleeding but she says that is alright, no one has mentioned the reversal operation I want to sing and shout again and be Mummy’s wild child.
Granddad Owen has gone back to the war so maybe soon we will go back to things the way they were.
Over the last few days things have become uncomfortable and I cannot settle to playing or doing anything for long periods of time, the nurses came and gave me something with a long name it was very good because shortly afterwards I went to the safari park to see the animals and that was great fun.
Whatever it was did not last very long and Mummy and Daddy rang the Macmillan nurses and they came and put me on some morphine it makes you feel nice and sleepy and a little afterwards you can play again.
The man from Alder Hey has told the Macmillan nurse to give me some steroids – yippee maybe I will be all right again now as they helped me last time.
The steroids made me feel better for a little while and I went back to the safari park, this time Jemma came as well, as we had fun laughing at the monkeys.
I have been unable to have any physiotherapy, as I am too sick and I needed to have my ‘Trachi’changed, the granulation makes it bleed and I do not like that.
I seem to be having good days and bad days now and I do not want to sit by the table anymore I feel vulnerable and the safest place is to be lying in my lovely big bean bag watching Noddy and Postman Pat, that is when I am not asleep.
One night when Nana Ali and Grandee Pete were here I felt very sick and managed to block my ‘Trachi’ and I went blue, Mummy and Daddy knew exactly what to do and afterwards rang the Macmillan nurse who said to put me back on the steroids. After that I had a few good days.
Over the weekend lots of people came to see me, Uncle Michael played for ages and his little girl Emily played with Jemma – Granddad Owen is back from the war.
I am very tired, I do not have any pain but I sleep lots and lots and then play with my motorbikes, I do not want to go upstairs to my bed I want to stay in my bean bag for ever.
My feeding tube keeps filling up with coffee ground stuff and the Mac’s say to keep an eye on it.
Mummy looks tired and Daddy seems sad but they keeping loving me loads and loads. I find it difficult to get my breath and people whisper how blue I look.
It is the fifth of May today I feel really bad. I was sick this morning and stopped breathing for a while and Mummy and Daddy gave me oxygen.
All my grandparents came to see me and the nurses seem to be here more of the time, Jemma wants to know if I am going to the angels. Mummy says probably very soon.
I am very very tired and feel that I can no longer struggle to keep breathing my heart still wants to but my brain is making me sore.
It is May 6th, and the middle of the night and I am in my bedroom, we are all together – Mummy, Daddy, Jemma and me. We all cuddle up and I feel safe with them, I take my last breath and travel up to the angels, it is so peaceful and bright.
Jemma keeps talking to me and Daddy is crying Mummy is on the telephone.
Lots of the family were at my house after a while they all went away. Jemma has chosen my favourite shirt, my jeans, shoes and Spiderman socks. Jessica has gone to the nursery, as she is too young to help with ‘adult’ things.
A lady has come to take me to get a special box so Daddy wrapped me up in my ‘blankie’ and carried me to her car.
None of them seem to realise that I am not in me anymore I am up here with the angels looking down on everything they are doing.
I am in the ladies house and she looks after me, but the box did not arrive on time so she has put me in a special place while lots of the family came to have a look at me. They are all crying, they cannot see how happy I am now –I do not feel sick and I am not at all wobbly.
The box arrived it is white with big gold handles and is very nice and comfortable. Mummy and Daddy want to take me home again until it is time for my ‘send away’ party.
It is nice being back home in my lovely box, Jemma keeps coming to talk to me and it is just like before I was sick everyone chatting and having food and drinks and every now and again someone comes and looks inside the box and touches me or just says nice things like ‘isn’t he beautiful’.
There seems to be something about me in the local paper as Mummy keeps on reading things out about me.
Sister Rosalie who I first met at the hospital came and she is talking to Mummy about my party, Jemma is getting a new dress and Jessica is going to wear the one she had for her christening, she did not use it because I became ill.
Daddy comes and sits with me a lot and talks to me about the party, he slept on the floor next to me, I suppose he thinks I am frightened to go upstairs, I wish I could tell him that I am not frightened anymore. I know he is going to miss me and will think about me loads and loads.
The night before the party there is just ‘our little family’ together for the very last time and that was really nice. Daddy put the lid on my box, as I cannot stay for much longer because I have a job with the angels now.
Party day is here at last, Jemma and Jessica look really nice they have got matching headbands –it’s a girl thing.
Suddenly the nice lady is back and she has brought a lovely carriage with two ponies to take me away, there are lots of lovely flower things going with me – Noddy in his car, my own number plate, spanners and hammers, teddy bears and angels, and of course a motorbike I would be no use to the angels without it.
The carriage takes me up to the church were I was christened. Mummy and Daddy’s uncles carry me into the church and the ‘priest man’ who poured water over my head is there, he cannot get inside the box so this will be dry visit.
As we go in there is music ‘twinkle twinkle little star’ it sounds really nice and makes me feel happy.
I am in the middle of the church, this is a good ‘spec’ because I can see everyone- there are lots and lots of people, all my family, all their friends and lots of people who I had so much fun with. Everyone has been given a special piece of paper to remember today.
There is more singing and Aunty Kathy keeps reading things about me, the priest man tells the angels to come and get me. Before long I am on the move again and I have another ride in the carriage.
When we arrive at the next place, the men put my box into a deep hole and Mummy and Daddy throw lovely white roses on top of me and Jemma puts two in for her and Jessica.
Jemma then threw in her Noddy doll, which she always said was hers and that, tells me how much she loves me.
Everyone is crying again and my Mummy and Daddy are very very upset –
The senior angel comes for me he is nice and has a lovely smile, I feel happy.
We are looking down at everyone, he says that this has been one of the best party’s he has been to for a while and asks me if there is anything I want to say as he will get Kathy to tell them -
I want to tell them -
“I know that you will always remember me, now that I have gone away
I want to say something before you all leave here today
‘THANKYOU’
For the very best time that a sick child could have had
‘THANKYOU’
To the most wonderful Mummy & Daddy
Who love and cared for me so much
‘THANKYOU’
To you all, for coming today and giving me a lovely party
I blow you this kiss and say -
Whenever you are lonely
Whenever you are feeling blue
You only have to think of me
Because I will be thinking of you
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