One day I had just come home from school, when I told my mom that my back was hurting me. My mom had a look and said that she noticed a lump, so she phoned the doctors. They told her to bring me up straight away. When the doctor examined me she said that she would make me an appointment to go to the hospital. At which point I was very scared. All sorts were going through my head. When the appointment came through, the doctor explained that I had an illness known as SCOLIOSIS. I was frightened - I did not know what it was or where it had come from.
The doctor suspected that it had probably been passed down by either my moms’ or dads’ side of the family. It was then that I found out that my dads brother Basil, had got scoliosis also.
About a month later, we went back to the hospital. They said I had to have an x-ray. I was anxious because I had never had one before. I felt both angry and worried when they told me I had to take all my clothes off, except for my pants. When they looked at my x-ray, they didn’t look happy, but wouldn’t tell us anything. When my mom and I got home, all we did was cry.
A few weeks later, I started to fall over a lot, and get pain in my back. The next time I went to the hospital I had to have another x-ray. I wasn’t as scared this time. The doctors asked my mom and I, if we wanted to see them - we said yes. When we did we saw a curve in my spine. The doctor explained that scoliosis was curvature of the spine. When I got home I went straight to my room, slammed the door and cried. I think my mom did the same, and then we cried together. The following day my mom explained to all my family what was going on.
As time went by, the curve got bigger and bigger. The doctors were trying to find out why I had got scoliosis. If it was genetic I would have had it from birth. This meant a lot of tests. The first one I remember was an MRI scan. This was to see if I had any tumours (cancerous cells) in my bones. I was very scared but my mom was always there with me, so that helped me a lot. I also had to have another scan of my whole body, to see if I had a blood disease called leukaemia. This was the worst. I had to have a blue dye injected into my arm, and left for a whole hour. I was then finally put into a scanning machine. When I got home I was in a lot of pain with my stomach. The doctor said I was suffering from an allergic reaction.
We were always back and forth to the hospital. Roughly two months later, I was transferred to Birmingham Children’s Hospital to see a bones specialist. There I had even more x-rays and scans. The scanning machines looked very scary - they were like tunnels. They said that this time they wanted to take pictures of my bones, and that it would make a lot of noise. They also said not to worry because it wouldn’t hurt. I got to listen to the STEPS album so that I couldn’t hear, but I still could. This scan also made me ill.
About a week later I was getting a lot more pain. I noticed that my shoulders were a bit uneven. I told my mom, she said they had been like it for some time. Ever since then I have been teased a lot and had to take a lot of time out of school.
Then I was referred to Birmingham Royal Orthopaedic to see a scoliosis specialist. I had even more x-rays and scans. But I didn’t like these at all. I couldn’t listen to any music, so I could hear everything that was going on, but I still managed to hold still. The doctor said that the medical term for my illness is ADOLESCENT IDIOPATHIC SCOLIOIS. It was very rare form as it had developed early, as I was only 8 years old at the time.
A few months later, I started having bladder problems. I would wet myself, and not even know that I needed the toilet in the first place. It got so bad that even wet the bed. So the doctors did more tests. They decided that I suffering from stress.
The curve in my back was getting we doctor worse. The doctor explained to us that he wanted me to wear a body brace as it may help with the pain, and reduce the curves progression rate. He said that if I wanted it to work I must wear it 23 hours a day. Wearing the brace was very uncomfortable, and it rubbed my back, under my arms and the tops of my legs. It did not work at night as I was awake due to being uncomfortable.
After wearing the brace for 6months, I had to go back to the hospital. I had to have some x-rays to see if the curve had grown. I already knew it had as I was in a lot more pain. I noticed that my ribs were digging into my hipbones. So sitting down was very uncomfortable. When they came back with my x-rays, I could tell he was about to tell me bad news by the look on his face. The doctor sat down and explained that I had developed 2 more curves - I know had 1 at the top, 1 in the middle, and 1 at the bottom. He said he would send for me to have an operation to straighten them out - corrective surgery. I was extremely disappointed that the brace had not worked.
My mom and dad told me all about the operation. I also did some research on the internet and books. In doing so I realised just how serious it was. Everyday I would look in the post to see if my appointment would be there. I felt sad when it wasn’t, all I wanted now was just to be better, normal and have friends.
One day I came home from my Nan’s and my brothers had gone out to play, there was just me and my mom in. She said that my appointment had come through. I was confused sad because I was scared of death, but happy as I thought I would finally be like other girls my age and accepted.
Then the day came. The day I had to go into hospital. When I arrived, they showed me around and explained what would happen. After that, I went to play in the playroom. When the doctors came to see me I had to go back to my bed. After looking at my notes he said he would come back in a minute, I thought nothing of it at the time. Then a play nurse can round and painted a lovely butterfly on my arm. When the doctor did come back he had made the decision to cancel my operation. This was due to my bladder problem. I cried a lot because I thought I would finally be normal, whatever that was. When I got home my mom gave me a card and a pink teddy. She said she was going to them to me when I came out of theatre.
The next time I went to the hospital the doctor said that my back was a lot worse than expected. He put me on the emergency waiting list to have the operation. I was so glad when the appointment did come through as the pain and discomfort was unbearable. I remember I had to go in on the 22^nd and I had my operation on the 23^rd January 2001. At which stage I was 10years old.
When I went into hospital I was crying because I thought I was going to die, and never see my family again. The ward was really nice. The doctors and nurses made me laugh all the time. When the doctor came round he had to take some blood. He was surprised when I did not cry, but I was used to them by then. About 5minutes later my mom called me out of the playroom. There was a girl on the ward who was scared to have a needle. I showed her my little cut and told her not to worry, “I wont hurt at all” I tried to assure her. Her name was Nicola, and we were both having the same operation. We promised to be friends and help each other through it. After finishing the horrible dinner I got ready for bed, and watched some T.V. I wasn’t that scared because my mom was sleeping right next to me in a chair.
The next morning the nurses woke me up at 6:30 so I could have a shower, and wear a plastic band around my arm. They also made me put on a theatre gown, and some paper pants which were horrible. My mom was trying to make me laugh, but she wasn’t getting anywhere. So we just hugged each other, until the nurse came round and gave me an injection to help me to relax. I remember my mom saying that she needed one as well. I had to get into bed just after as I felt a it drowsy. My mom was holding my hand and rubbing my hair. The doctors wanted to take me down to theatre, but I wouldn’t go until I had my teddy (whom I’d forgot) Daffy Duck. My y and Auntie Kerry brought him. The next thing I remember was 2 men pushing me down a corridor. I could hear someone crying, I think it was my mom. I went into theatre at 8.00 and I came out 21.30.
After the operation, I was put into HDU (High Dependency Unit). When I woke up I couldn’t move. I was covered in wires; I even had a tube going up my nose. All of which felt horrible. Lots of machines were all around my bed. I can remember breathing funnily.
I kept going to sleep and then waking up again. Every time I woke up I could see my mom, but I couldn’t call her. I wanted to tell her how much I loved her, I longed for her to hold me. The next day when I woke up my mom gave me a teddy of a dog. My dad had brought it for me but I was asleep when he came. I was always in a lot of pain and so cried a lot. No matter how much I cried the nurses were always kind and patient. The one time, a nurse came and showed me a button connected to a TENS machine. When I pressed it, it would help ease the pain a little. The doctors came round every few hours and would ask me to take deep breaths, cough, and wiggle my fingers and toes. I was often to tired and it would hurt a lot. My Nan and Auntie Kerry came to see me everyday. This gave my mom chance to get something to eat and drink, as she wouldn’t leave me on my own. My Dad came at night, but I would usually fall asleep whilst he was talking to me.
The one night I was awake in a lot more pain than normal. The doctors stayed with me as my breathing had gotten worse. I had to take a lot of different medicines and the doctor put the oxygen mask back on my face. The next day the doctors found out what was wrong with me. I had developed pneumonia and, my left lung had collapsed. I was really ill and my mom was crying a lot. It was at this point that I found the determination to fight back. If not foe me then for my mom. We had come this far, and I was not going to lose now.
A few days later, I had really improved. I was starting to feel a bit better so the doctors agreed that I could have some of the tubes taken out. My mom was still having to wash me - as I wouldn’t let the nurses. I was to shy. My mom works with disabled people anyway, so she knew what to do. I had to be rolled over in a special way due to all the tubes and not being able to bend my back. When I had to have some of the tubes taken out I was really scared. My mom as usual stayed with me.
The doctor said he wanted to take the big one out of my chest first. It was as big as a 1 pence coin, and long. I recall having to lie on my left side, my mom was kneeling in front of me holding my hand. She kept telling me over and over again how brave I was being. I just wanted it to be over as I was in so much pain. I was crying although crying hurt to. I tried not to but I couldn’t help it. After that they changed my dressing, it was stuck to my skin. The doctors and nurses kept telling me to take deep breaths. I was told to think of the end result. When they had finished, the nurse out 3 butterfly stitches where the tube had been.
I was in HDU for 7 days. I was really glad when they said I could go up to the normal ward. This must have meant I was getting better. I thought I would finally be like other girls. The only downfall was that they made me promise that I would eat and drink properly.
My physiotherapist was called Helen. She came to see me every day to do go through my breathing techniques, check my back, and cough. The day I went back to ward 11, Helen came to see me, she commented on how much better I looked. She told to my mom to go home and rest and that she would stay with me, but she wouldn’t go. Helen said she was going to see if I could stand. I got a little nervous, but I was also excited. It was difficult sitting up, but I got there in the end. When I finally stood up I was a bit sore. My legs felt like jelly and it took a while to get my balance. I walked about 4 steps but then went extremely dizzy so had to lie back down. Helen thought it was quite normal as I was weak and hadn’t eaten for days. That night I did try to have something to eat but I was sick straight afterwards. The doctor gave me some medicine and an injection to help.
The next few days were difficult. My family were worrying about me. I could tell that both the doctors and nurses were growing in concern. I had to have another scan. This time it was an emergency and of my stomach. The scan showed that my back bowl had shut down. The doctor explained how it was nothing to worry about as he could give me something to help.
I was ok apart from still not being able to walk, nor having any energy. Whenever Helen came to do my physic I passed out. So the doctor decided to give me a blood test. This showed that my blood count was really low. I had to have an emergency blood transfusion. It took all night as I had to have 2 bags. The nurses came to check my blood pressure and temperature every 15minutes. This was to make sure that my body did not reject the blood. It never kept me awake but it did my mom. She had to keep moving so the nurses could get to the machines.
The next day, I was much better I finally had some strength and kept my breakfast down. I do still have bowl, bladder and lung problems but I take medication. When Helen came I managed to walk 4 beds down the ward, with help and support but then I got tired. She said she would come back that afternoon, and was very proud of me. Then the doctor came, he said if I ate and drank well all day he would come and take the rest of my drips out. He also said that when my walking improved and I could manage the stairs I could go home. When Helen came the following afternoon, I managed to walk to the toilet with her and my mom. I felt great because my catheter and everything else had gone. Helen said she would come back in the morning and I could hopefully try the stairs.
That night my mom and I sat up reading together. We ad already read them but it was still fun. The next day I woke up early. My mom asked the nurse if I could walk to the bathroom, to have a wash. I was allowed, as long as I had both my mom and a nurse with me. I t was great finally walking with a straight back. I wasn’t allowed to have a bath because of my dressing. My mom washed me down so I felt nice and fresh. I managed to put some clothes on as well for the first time in weeks. Helen came at 10:00. She was pleased I had walked to the bathroom, so I could try the stairs. I managed to climb 3 steps before getting tired and breathless. The doctor came at 11:30 to examine me. He said I could go home if my mom would care for me. I was sad in a way having to say goodbye to all the doctors and nurses. But I wanted to go home and see my bedroom and I suppose my brothers. I stayed in hospital for 3.5 weeks in total even though I was only supposed to stay for 7-10days.
The doctor said the main reason for there being so many complications was because I was so young. I was also very underweight. This meant the recovery time was longer.
When I pulled up outside my house, my Nan and brothers had put up a sign saying “Welcome Home Stacey”. it felt great being back home. There truly is ‘no place like home’.
Having this illness has made me grateful that I have such a wonderful mom, who is always there for me. She promised we would get through this together and we did. I am also thankful to everyone I know that have supported me, because without you I could never have got through it. You all pushed and encouraged me, never allowing me to give up. I owe you all my life.
 
 
December 31^st 2007 age 17years.

Things had been great up until 18 months ago then I started having a lot of pain again, which actually put me in hospital. I went to see my surgeon today. Unfortunately my spine has curved again. This time however it is above the rods. He has decided that it will require surgery which I will have in the next few months. He cannot perform the surgery anterior this time and will have to go through the back. Which will mean another scar. I have been told to put on 1 stone in order for me to make a nicer and faster recovery. I am both angry and disappointed as I have to go through it all again. However at least this time I will know what to expect and I can prepare myself more. We’ll just have to wait and see!!!

Back to Stories