Kirsty

19th January 2005:
I attend Pendlebury Children’s Hospital for my Pre-op’ surgery.

What happened on this appointment?
Well, I first go for an x-ray of my spine, many x-rays were taken in different passions, I then go back to clinic and wait to see Pauline (Scoliosis Nurse Specialist). Pauline has a long chat with my parents and me and tells me I may need a blood transfusion after surgery and had I thought about having an Autologous blood donation, which means I would be my own blood donor.

Blood Donation Procedure
A blood sample is taken from the thumb (waaaaa, I have to say this made me jump and it hurt, the little Vampire) to check my iron level. I also have to take an iron supplement for a few weeks (3 iron tablets a day) before I can donate the blood, which will be done in about 3 weeks time. I will give you more information on this procedure after I have had it.

My blood pressure was taken and I had a lung function test, which were all good. When I go back to donate my blood I have got to have another thumb prick waaaaaaa… and a nerve test (I will tell you more about this test when I have had it).

Time for a chat with the doctor
My surgeon takes a look at the x-rays, takes a pencil and ruler and begins making marks on the x-ray, and making measurements of the curvature, he is not happy with the x-ray results and keeps saying that they must be wrong.

He then began to examine my back by looking at my back while I was standing and by having me bend over at the waist (this was very uncomfortable). He says looking at the x-ray today things look worse than last time and that he may have to put more mettle work into the spine than he was first going to. He decides rather than send me back for more x-rays now, that on the day of the op’ he will stretch me and see if it s still the same, it would be too painful if he did that now. But he is concerned at how the x-rays are looking.

How he hopes to go about the operation
The incision will be made down my side; he will deflate my lungs and may have to remove a rib in order to reach the spine. He will also need to detach the diaphragm to gain access to the spine, remove the disc material from between the vertebra involved in the curve. This will increase the flexibility of the curve and provide a large surface area for spinal fusion. Rods all put in place from the side. He tells me the spine could go worse doing it this way. But if it were his daughter he would want to try this way first (I am a little worried about this). But I guess the doctor knows best.

Talks About the risk and complications
I will not go into this too much because it’s all very scary and it will not happen. But some of the risks are; chest infection, due to drains in the lungs after surgery, thrombosis (blood clots) to lungs due to him deflating the lungs and to the legs due to not being able to get out of bed. One leg will feel cold and the other warm (this last for many months). Also because I have been in a brace for so long the spine may decide it don’t like it when they try to straighten it and goes into spasm in which cash they have to stop surgery. Surgery is going to be made more difficult because I’m skinny (so my doc’ tells me).

How I Feel at the moment
When my surgeon said that I needed surgery to correct my curved spine (scoliosis), going back a few years ago, I felt a little scared about having surgery: however, I am trying to look at the positive sides of having my curved spine straightened. I am trying to keep a positive attitude about what I am going to have to go through and how much better off I will be later on in life. I know everything will be ok, I have family and friends and they are all very supportive.

16th February 2005:
Time for me to donate 1 unit of blood, I’m off to have a thumb prick done first Waaaaaaaaa, I remember this from last time. I think I was very brave, mum held my hand and the nurse gives a nice badge (told you I was brave). I am also given a white box, which looks, like a small ice cooler, my bag of blood will go in to this to keep it cool.

Back to the clinic to give my unit of blood (see pic' below), I had to wait for a while so Scott and me (my teddy) went and played with this car, it was a transformer one that turned into a robot! Then we made a jigsaw puzzle, by this time it was my turn Waaaaaaaa. The nurse checked my blood pressure and temperature and completed some necessary paperwork.

The nurse looks for a vein

I had to lie on a bed, the EMLA cream, which my mum had put on me about an hour earlier, was removed and a needle put into the vein for the replacement fluid, which was BIG! And inserted into my little hand, it stung a bit but not as much as the thumb prick.. Then the needle used to collect the blood was inserted, this one really, really hurt Waaaaaa they went straight through a vein. The blood is collected in a donor bag and it took about 30 min’s. After the donation was complete the needles were removed and a dressing applied. I had to rest for about 15 minutes; I was also given a mars bar and a can of coke to boost my sugar back up. I had to rest for the rest of the day.

18th February 2005:

Went for my EEG (electroencephalogram) a nerve conduction test; this only took a few minutes. I had to lie on a bed and some wires were put on my head and some on my feet (poor nurse having to touch my feet). The technologist told me they would be in theatre during the surgery on the spine to help the surgeon make sure nerves are not damaged during the operation.

Family care worker:

I also met Sandra the family care worker she was really nice. Sandra shown me round the ward I will be going on and told mum they will try and give her a room or a bed next to me. She also took me down to the I.C.U Unit but I did not go in, Sandra decided it may be a bit scary for me and I will not remember being on there anyway. We gave each other a big hug and she wished me luck and said she will come and see me when I am in.

9th March 2005 the day before my operation.

To day I received a very special award, which is The Diana, Princess of Wales Memorial Award. My head Teacher (Mr Brooks) and Mr Ridley nominated me for the award and this morning in our school assembly I was presented with a special certificate and a lapel pin I was only in school for a couple of hours as I am going into hospital later today.

My First day in hospital
On the first day I spoke to the surgeon, doctors and nurses and physiotherapist. They were all very welcoming, I got settled in and got to know the other children and mums on my ward. There was one other girl in the bay who had had the same operation, as I was about to have. They keep the spinal children separate from the main ward due to infection. There are only three children in our bay at any one time.

10th March 2005: The day of operation
Mr. Oxborrow (my surgeon), and his team came to see me very early and tried to calm me (they did a good job), next Dylon (the anaesthetist) came and runs through things with me (he is really nice and very funny). My dad turns up next, (my mum was already there as she stayed with me through the whole night), I was to change into my operating gown, a nurse put cream on the backs of my hands. These two ladies came to do the nerve impulse test. They stuck electrodes on my head, ankles and linked the wires coming from them to a machine, which was then linked to a computer. I then sat on my bed and had to stay as relaxed as possible. From the computer she sent a pulse into my ankles. It’s a bit like pins and needles. The computer then recorded the signal going up my spine into my brain. This test is so that during the operation they can compare my normal signal to all the signals they get during the operation. It means that they can detect if a nerve is affected. There is absolutely NO pain involved!! The wires are left in place for when I am in theatre.

I was wheeled down to the operating room with mum, dad and a nurse. When we reached the room only mum and the nurse was allowed in with me (the room was small), everything went quickly. I hardly noticed them putting me to sleep, as I was talking to my mum and I had my new teddy, which Kat from Post Pal sent me. This was a good thing!!!!

Operation is stopped
Mr. Oxborrow woke me up during the operation to ask me to move my toes, apparently there was a problem with the surgery and he had to stop, if he would of continued he could of paralysed me. I remember him waking me up on the table; I was not in any pain even though Mr. Oxborrow was in the middle of the surgery. He told me he would have to get some advice and try again in a few days. He did not think I would remember him waking me up, but I did and told mum who was just about to brake the news to me that I would have to go back to theatre in a few days time. I was put on H.D.U (high dependence unit), when I woke mum and dad was sat next to me I wasn’t allowed a drink for a couple of hours and I was really thirsty. Mr Oxborrow came to see me and asked me to wiggle my toes, I remember I could not manage to move them, so he left me alone and said he would call back and see me again before he went home. My mouth was really dry so Mum put water in my mouth with a swab so it didn’t dry out. I kept falling asleep. I was given anti-sickness medicine but none of them worked I kept on being really sick. After a couple of days I had my chest drain taken out and when your drains are taken out all depends on each individual person. I won’t lie, it was painful but it was so quick that it didn’t really matter. After four days on H.D.U I was taken back to my ward while I waited for my second operation.

Back on my ward
I was still in a lot of pain and attached to drips and other machines, I was not allowed to move or sit up and to be honest I couldn’t if I tried. It took five nurse to log roll me when my bed was being changed. My next operation was now planed for the following Thursday. Mr Oxborrow told me he would not be doing the operation this time as he had to be somewhere else, I was really upset by this news and told Mr Oxborrow that I did not want anyone else doing the operation and how I trusted him and wanted him to do it.
Mr Oxborrow was really good and said that he would cancel all other appointment to be there for me (how nice was that?). But I took a turn for the worse and caught an infection so the operation was postponed and planed for the Monday. I felt really bad that
Mr Oxborrow had cancelled all his other appointments too and apologised to him, he told me not to be daft and to just concentrate on getting better.

Monday, Day of second operation
Mr Oxborrow came really early to see me and took my temperature (36.8), happy for operation to go ahea, he says he will see me later in theatre, about an hour later I started being unwell, I was still taken to theatre where Mr Oxborrow was waiting for me he took one look at me and said he was not happy with the way I looked and took my temperature, bad news it was now 37.9, he said I’m sorry I cannot take the chance with a temp’ that high and I was sent back to the ward. The other parents and kids on the ward started cheering when they saw me being wheeled back and could not believe it. More antibiotics given to try and get rid of this infection and my temp’ was taken every two hours for the next two days. Mr Oxborrow said he wanted it to stay below 37.4 for 48 hours before he could go ahead with the operation. Operation now planned for Thursday.

I was in a lot of pain and still being very sick but I never got the chance to be down as the nurses were always around cheering you up and making you laugh. One night, we got the nurses to play the “YES”, “NO” game what a laugh. A lot of your fellow patients are having the same operation so you can help each other through any tough times too. Those friendships you make are precious.

Thursday time to try again 24th March 2005:
Mr Oxborrow calls to see me early to make sure I was feeling ok for surgery, The nurses and doctors were very reassuring that everything would be ok this time and my parents were there for me every step of the way so I didn't really have too much to worry about with surgery. After making sure there is an empty bed on H.D.U I am prepared for surgery, cream on back of hand and electrodes connected to my head (more about this below).

Mr Oxborrow explains he will be doing the posterior approach this time, which is done, from the back of the body. It involves making a long, straight incision into my back and moving aside the back muscles to reveal my spine.

He will then inserts two titanium rods, holding the rods in place with wires, hooks, and screws in various points. The spine will be repositioned and held in place with these mechanisms while the new bone surface fuses. I will need a bone graft, which will be taken from my pelvic bone, this will help the spinal bones fuse together in a permanent position.

I remember seeing mum and dad and Mr Oxborrow looking over me asking if I was ok. I felt a bit weird, I wasn’t allowed a drink for hours and I was really thirsty. I kept being asked to wiggle my toes. I was wheeled to H.D.U after a while the nurse and my mum put water in mouth with a swab so it didn’t dry out.
The next day I had an x-ray machine brought over to me and a board slid underneath me so they could take my x-ray. That was a bit uncomfortable. They removed the board and put my x-ray up on a screen in front of me. Mr Oxborrow said he was really pleased at the results and pointed out where he had to hook over the top of my rib because he could not get screw in to hold the rods. I am then told to rest. I kept falling asleep. I was given anti-sickness medicine but none of them worked I kept on being really sick, this is only to be expected after surgery.

Mum said she was off to my ward to let them know how I was doing, when mum came back I could not believe who she had with her, I thought I was seeing things, my mum had Danny Young with her (Warren out of Corrie', see picture below). I was not looking or feeling my best as you will see by the picture but it really made my day seeing Danny. He stayed for little while chatting and gave me a little hug. I wanted to hug him back but I could not move.

Danny Young and Me, when I was H.D.U

Back on the ward:
Well, operation over and now I start on the road to recovery.

After a couple of days the catheter is removed, this just feel a little uncomfortable but is not painful. I still had numerous tubes in me and a chest drain, as my lung had to be collapsed whilst they were performing the operation. I wasn't allowed to stand for over a week after surgery, or sit up, to allow the operation to settle.

About 7 days after the operation I had to sit up on the side of the bed so I could be fitted for my brace, this was my first time of sitting up in 3 weeks. I used this special technique. I rolled onto my side and then swung my legs off the side of my bed while sitting up. It made me feel sick and dizzy but I was pleased to be able to do it. I had to have two nurse’s and my mum help old me up while Clair wrapped wet plaster round me and this other guy smoothed it to make the mould for the brace. Unfortunately I started being sick and had to be given an injection to try and stop it. Clair tells me my Brace will be ready on the 5th April (My Birthday). The next day I sat in the chair for a couple of minutes my nurse stayed by me and so did my mum, I felt really dizzy and sick and could only manage a few minutes before I had to go back to bed.
The following day I did the same. I was going to try and stand up but I didn’t feel confident enough so I didn’t.
The following day I managed to stand up.. I walked a couple of steps also. It felt uncomfortable as all the muscles had to adjust but I knew as soon as I got up and about the better I would get.
The day after that I walked a bit and sat in the chair for a couple of minutes. By now I was starting to get the hang of it and I was gaining more and more confidence. I just wish this sickness would stop now.

5th April 2005 My 15th BIRTHDAY:
I received lots of cards and gifts from family, friends and hospital staff and I had a large box of gifts from my friends at Post pal.

My friends on the ward made a surprise party for me and Julie (Haley out of Corrie’) and Ian (Julie’s husband) came to see me, they both sprung onto the ward singing Happy Birthday, they looked really funny. While Julie and Ian were with me the nurses wheeled in this great big cake with more gifts from all the children and staff on the ward. I could not have candles on the cake due to the oxygen at the side of me so Julie took the cake to the door and put one on for me so I could blow out the candle at the door. I had a really nice day even if I was in hospital everyone tried to make it very special for me. Clair called with my new brace all wrapped up in a big bow and my doctors called and sang happy birthday to me too.

Getting ready for going home:
A couple of days before I went home, I went down to the x-ray department, to have two standing x-rays taken. I was wheeled down in a wheelchair because I could not stand up very well; I am still very weak after losing so much weight and still feeling very sick.

X-Ray:
Mr Oxborrox brought the x-rays to show me and explained that he had inserted 2 titanium rods down either side of my spine and pins and hooks hold the rods to the spine and he pointed out in detail on the x-ray for me. I am so glad he played with Meccano when he was younger…ha..ha.. It looks like he did a good job. Mr Oxborrow extracted the sacks of fluid that everyone has between each vertebra and then fused each vertebra together to make my spine solid; they also used bone from my pelvis.

Home at last: 8th April 2005
I got to go home but unfortunately this was very sort lived as I had to be readmitted the following day with sickness and a high temperature.

I was allowed home again on the Sunday on some new tablets and given an appointment to see Mr Oxborrow on the Friday.

Friday and time to see Mr Oxborrow:
I was still feeling very unwell and by the time I reached the hospital I could hardly stand up I felt so dizzy and sick, Mr Oxborrow saw me straight away and did not like the look of me and phoned his medical team to ask them to have a look at me where I started being really sick.

I was kept in hospital:
I was kept in hospital for more tests as I had a high temperature and kept being sick. I had to go back on the drip so they could some fluid back into me.

Test, which were done over the following weeks:
I had to have an Ultrasound scan of my tummy an ultrasound use’s sound waves to build up a picture of the inside of the body. They are completely painless. These scans are usually done in the hospital X-ray department and you can get the results very quickly. After my ultrasound doctors decided that I should have

After my ultrasound doctors decided I should have an endoscope.
An endoscope is a test that looks inside the body. The endoscope is a long flexible tube that can be swallowed. It has a camera and light inside it. I did not have to swallow it as I was given an anisetic for it. The doctor took samples (biopsies) of some tissues through the endoscope so he could look at it more closely under a microscope and look for this bug that was showing up in all my blood test.

After the test I was told I had to take these two tablets as my stomach was very inflamed and my food was not moving across correctly and just building up.

I had a brain scan
The news was good my doctor said that the tumour that is on my brain stem had not really changed from when I last had a scan, which was great news.

A PH Study:
Doctors decided to give to do a PH Study, which measures the acid that refluxes from the stomach All medication was stopped for about 24 hours before the test was scheduled to begin.

A very thin tube, thinner than a feeding tube was inserted up my nostril, until it reached just above my stomach. It had a very small probe at the end that registered any acids that was refluxed from my stomach. The nurse asked me to drink some water as this can makes it easier for the end of the tube to travel to the oesophagus. Inserting the tube does not hurt but it is really uncomfortable while they are doing it. It can take more than one attempt to insert the tube, which happened with me. It also made me sneeze, I also kept retching because it was tickling the back of my throat and made my eyes water. When the tube had been inserted, the nurse put some tape on my cheek to hold it in place. An x-ray was taken to make sure that the probe has been positioned correctly. The other end of the thin tube is attached to a small computer (In my case a small black box) for 24 hours.

Meanwhile I was given a diary sheet to complete. On this sheet, which has to be a running history, you state the time of each activity that takes place whilst the study is being done and when you are feeling sick or eating and having a drink. I was so glad when my 24 hours were up I really did not like having the tube up my nostril. I got my test results back a few days later and everything was ok.

June 2005
We are now into June and I am still in hospital, doctor still don’t know why I am still being so sick and losing weight. My destination decides I should have Polycal in my foods and drinks as well as the Scandishakes in the hope I will put some weight on. If not I will have to have a nasal gastro tube put in (I sure hope not).

Julie (Haley out of Corrie’) calls to see me and we have a good laugh, we have been talking about ghost on the ward and some of the nurses I have made friends with have been telling me some funny stories about things that have happened to them when they have been working nights. My mum is still sleeping on a chair next to my bed and said she will not walk over the car park late at night, I wonder why?

6th June 2005:
Dr Dixit calls to see me and says he will call back later to see how I have been and that he wants a meeting with me to talk about how things have been going this past week.

Later that afternoon, my mum, Dr Dixit, nurse, and me go into the parents room for a private meeting, we talk about how things are going and about me going home (at last), Dr Dixit mentions that I should maybe go home for the day and come back to sleep at the hospital for a day or two but I so much want to go home and I am meant to be going to a charity function for When You Wish Upon A Star on Friday. I mention this to Dr Dixit and told him how important it was to me, so he agreed I could go home on the Thursday for good. Yes..Yes..YES! But, on the understanding he could arrange all the medical care I needed transferred down to my local hospital in time otherwise I would not be able to go home. I was still very much underweight, which they were not happy about, mum told them I would eat better at home and they agreed to try this.

9th June 2005:
I get to go home, I can’t believe it, it feels really strange being home and being able to sleep in my own bed for the first time in months.

29th June 2005:

Things are going ok I am still back and to the hospital but I have started to put some weight on even thou I am still in a lot of pain. My Dietician says the Scandishakes, which are high in supplements, protein and calories are helping me and I also still have to take Polycal in my food and drinks. I still have a long way go as I have lost 2st in weight but I'll get there.

7th September 2005:

I started back at school today but due to me having to go to hospital every week for physiotherapy I am only in school four days a week and school send transport for me, which is really kind of them.

9th September 2005:

I was at Pendlebury Children’s Hospital today seeing Mr Oxborrow due to the amount of pain I have been in and the fact that I am still having bouts of being very sick. He thinks that I may have a infection so blood test were done, he also arranges for me to go to the pain clinic in Sheffield, I am also sent for a x-ray , which is looking good apart from a slight kink at the bottom of the spine, which he is not too worried about at this time but which will have to be kept an eye on. Mr Oxborrow also tells me he wants to talk to Mr Thorn over the amount of tumours, which are on my spine to see if he can think of anything that can be done.

29th September 2005:

Not a lot of change really, unfortunately I am still being very sick and to day when I was on my way to Sheffield Children’s Hospital to see the Pain Management Team the ambulance guy had to pull over because I was being so ill. I have been put on some new Pain killing tablets (Tramadol) and we will see how they go over the next two weeks.

Tramadol is used to relieve moderate to moderately severe pain. It may be used to treat pain caused by surgery and chronic conditions such as cancer or joint pain It works by decreasing the body's sense of pain.

Two weeks later and getting side effects from Tramadol
Unfortunately Tramadol caused me some side effects, which was dizziness, headache, drowsiness, blurred vision, my sickness was getting worse, and I really did not feel very well and I was advised to stop taking it. Not everyone gets side effects from Tramadol, lots of people get the relief from pain from them.

15th October 2005:
Not a lot of changes over the past month really except up until last week I had continued to gain weight but I have lost some on my last visit and I have got to go back in two weeks to see how things are then. Still having Physio’ in the hydro’ pool every week.

I have received a phone call telling me I have to go back to Sheffield Children’s on the 10th November to talk about some other treatment, so I will update after this visit.

10th November 2005
I went to Sheffield Children’s Hospital today to meet with the pain management team. The morning started when mum and me were picked up from home at around 8.45am by Mark who was our ambulance driver for the day.

We got to the hospital about 10.45am and the team were waiting for us, we chatted and spoke about how things had been going, Dr Goddard decided to try a new tablet (Amitriptyline 10mg), he explained that I would have to build up the dosage due to one of the side effects making you tired and they can also affect heart rhythm in very high doses so I had to go for and E.C.G, which was over in another hospital, so back in the ambulance where Mark took us over for the E.C.G.

What is an E.C.G ?
ECG (electrocardiogram) is a test that measures the electrical activity of the heart.

I had about 10 self-adhesive electrodes attached to selected locations of the skin on my arms, legs and chest. The test was completely painless and took less than five minute to perform once the leads are in position. After the test, the electrodes are removed. The consultant will review the paper printout of the E.C.G.

The doctor will phone if it is not safe for me to take these new tablets. They think the pain is going to be difficult to treat due to the tumours on the spine but I will give anything ago and see how it goes.

I have got to go back to Sheffield on the 1st December ‘5 to let them know if these new tablets are doing any good.

11th November 2005
I had to go and see Dr Bennet this afternoon, she was pleased that I have put on weight and I am to continue with what I am doing. I still have to go to hospital every week for physio’ in the hydro’ pool. Hydrotherapy involves special exercises, which take place in a warm-water pool (usually at a temperature of 33-37ºC). The warmth of the water and the exercise tend to make me feel tired after treatment but I know its for my own good and I have still a long way to go yet.

30th November 2005
I am still having to go to the hospital every week to have physio' in the hydro' pool and have my weight checked. I am at Sheffield Children's Hospital tomorrow so I will let you know how things go.

1st December 2005
I went to Sheffield Children’s Hospital today, Chris (our ambulance driver) picked mum and me up about 7.45am and we got to the hospital around 10.20am, we went to wrong hospital first, which was the fault of the hospital telling us to go to the adult hospital.

Anyway, everything went ok we talked about the new tablets and then I had to try some relaxation exercises and mum had ago at it too, we both kept laughing. Well, they do say laughter is the best medicine.

The relaxation exercise’s we did were called

The Laura Mitchell Method Of Relaxation.
I am going to be sent a tape so that I can play it while I lie down and do the exercise, I have got to do them twice a day and I will do a well as my physio’, which I also still do twice a day. If anyone would like me to post this method to them I will gladly do so. We also spoke about how when you are pain it can be like being on a rollercoaster, On a good day we may get up and do a lot but then not feel so well and end up having to rest then get up do too much again and having to rest again, it is best to pace your self by balancing rest and activity so that the pain is not exacerbated (made worse) unduly. I am going to have ago at doing these relaxation exercises and mum said she will do them with me and I’ll let you know how we get on. I have to go back on the 5th Jan ’06 so I’ll update you on this after this date.

14th December 2005
I went for my physio’ to day and my physio’ was worried that my legs, hands and tummy were all very swollen so she said she was not going to do any physio’ and that I was to go to A&E and let them have a look at me. When the doctor saw me he made sure I did not have any blood clots in my legs and was very puzzled as to why my tummy was so swollen (it looked a so I had a football up my jumper), I felt very unwell too, after chatting it was suggested I may have done too much when I was in Lapland or it could have something to do with the tablets (Amitriptyline). I went home and was told to rest but if got any worse I was come back.

Mum phoned the pain clinic to tell them what had happened and even thou hey had not heard of this happening before with these tablets it was suggested that I come off them, which I did over a few days.

Thank you to all my doctors, nurses, family and friends for getting me through some of my difficult times this past year.

Take care

Love Kirsty x

5th January 2006

I was back at Sheffield Children’s Hospital today. We chatted about how the relaxation exercise’s were going, which are ok at the time of doing them but if I am at school or out I cannot do them. I have been asked to try Nortriptyline 10mg for the pain; I have to take 2 at night and 1 in the morning this is an alternatives to Amitriptyline. Nortriptyline can be used to treat chronic pain, and headaches. I will let you know if they help.

15th January 2006

I am back at Pendlebury on the 27th January to see how things are with my spine and Sheffield Children's on the 8th Feb' '06 and also going back into hospital on the 28th Feb' '06 to have three tumours removed from inside my leg, in the mean time I have to continue going to the hospital weekly for physio'. I will update after I have been back to Pendlebury Children's Hospital.

27th January 2006 Pendlebury Hospital

I went to see Mr Neil Oxborrow to day over the pain in my back, we chatted for a while and I was sent for a full x-ray of the spine, Mr Oxborrow was happy with the x-ray but a little concerned over some other issues. He sent me to have a blood test to make sure there is no infection in my spine. I asked if I could have the magic cream….Lol….Waaaaaaa, I don’t like needles, it took four nurses to try and find a vein because my veins tend to riddle or just dissaper.

9th February 2006: Time for my M.R.I Scan

I went for my Brain and full Spine MRI Scan today. An MRI is a way of taking pictures of the inside of the body without using x-ray and gives the picture in more detail. I took my teddy with me for luck and his nose fell off Waaaaaaaa, my mum is going to try and glue it back on. Anyway back to my MRI, I had to lie really still while the pictures were be taken, my mum came in with me. The scanner made a really loud “knocking” sound while it was taking the pictures but I had some headphones on listening to my music so that helped. The scan took about 50 min’s because of me having a brain (“Yes” I have got one, or so I’m told) and a full spine scan done. The results will be sent to Mr.Oxborrow and he will phone me next week with the results.

11th February 2006
The operation to remove the three tumours in my leg as been put back to the 29th March ’06, which is better for me as I am on holiday from school from the 31st March for two weeks. I am still going to the hospital every Wednesday and they say I will still be going for a while yet. I am having a big fundraising event for the Wish Team on the 11th March so I'll update again after this date, unless have any further news before this date for you.

20th February 2006
Hospital phoned to say they now want me in on the 1st March to do the operation on my leg but I have school exams on the 8th March and I am back on antibiotics due to an ear infection so I have had to tell them I will have to keep with the 29th March and I have also got this big event I am doing for Wish and I am not about to let them down.

I have had news about the spinal mattress I should have one very soon as it was going to be ordered today.

28th February 2006
I had to go to my doctors again last week over the ear infection, which I still have, my doctor gave me a letter to take to the hospital. On arrival at the hospital the doc’ decided to vacuum my ear to try and clear the discharge, he then told me that my eardrum was perforated.

What is a perforated eardrum?

A perforated eardrum is a hole or rupture in the eardrum, a thin membrane that separates the ear canal and the middle ear.

I have got to see an ENT specialist and have a hearing test in May to assess any loss of hearing.

I now have my spinal mattress too, it’s a little to early to say how things are just yet I have only had it two nights but I will keep you informed for anyone thinking of getting one.

1st March 2006
Not much news on the hospital front, went today for my physio’ and to be weighed.

22nd March 2006
Well, I have just got back from the hospital after having my pre’ op’ check to make sure I am ok for surgery on my leg next Wednesday (29th March ’06). I was meant to be going into hospital on the Wednesday morning but they have decided to bring me in the day before as I am first on the list and at the moment I have still got this ear infection and they want to see how my temperature goes, I may also need to have an ultrasound scan doing on my leg and some blood test doing before surgery. Not sure how long I will be in but not very long I hope.

I see Mr Thorn on the 12th April '06 as he wants to talk with me over the results of my last scan.

1st April 2006
Well, I am home from hospital after a couple of day’s stay, which is not too bad. I had three tumours removed from inside my leg in various places as you can see by the pictures below, I have got to go back to hospital on Wednesday (5th April '06, my birthday waaaaa) to have the stitches removed. While I was in I stayed on the Starlight Ward my mum stayed with me, we had our own room, which had its own shower and toilet and everyone was really kind.

12th April 2006
I went to see Mr Thorn yesterday, he wanted to talk over the spinal scan I had done a few weeks ago. Mr Thorn told me that the scan showed that I have at least one tumour on every nerve in and around my spine and he is not surprised that I am in a lot of pain from it.

Mr Thorn mentioned that some of the tumours look like NF2 tumours and he thinks I may have NF2 and NF1 but mum mentioned to him that this was said last year too and none of the doctors could really agree and that they were meant to be doing some test to make sure, which never got done and he said he could only go off what he was looking at.

I will have the spinal scan done again in 12 months unless the pain gets any worse as some of the tumours had grown and this is what is causing all the pain in my groin and the tingling in my fingers. He said they could try doing an operation now but the risk of paralysis was high. So I don’t want to take the risk.

In the meantime I have to continue attending hospital weekly for physio’ until I am a little stronger.

7th May 2006
I am attending the hospital everyday this week.

I have been told that it may be a good idea if I went back into my back brace to help support my spine and that that this may help with the pain. I go for the fitting for my new back brace next Friday.

I do physio’ for at least 30 minutes twice a day as well as attending hospital weekly for physio’ (hydro'), my family help me with my physio’ morning and night. I also do relaxation exercises twice a day where I lie down and listen to a tape recording lasting about 30 min’ each time. Before I start my relaxation exercise, I put on comfortable clothing. Lie down with the whole of my body supported. Making myself totally comfortable and closing my eyes. The tape recording is tailored for me and is about me going on a journey and swimming with dolphins. This is relaxing at the time.

I am managing to sleep better with the spinal mattress, I still have problems getting settled but I am not waking up as much in the night now.

10th May 2006
I was at Sheffield Children’s Hospital today the appointment went well and I did some more relaxation exercise with Sue.

I mentioned to Sue that I kept getting swollen ankles; she said I have some fluid retention (medically known as oedema) more so in one leg than the other and that I should mention it to my doctor so that it could be investigated more.

What is Oedema ?
Oedema is a build-up of excess fluid in the body tissues. If the fluid is in the tissue under the skin it leads to a puffy, shiny appearance and a doughy feel. Most commonly, oedema is seen in the ankles or legs, as the fluid is gravity-dependent.

Sue suggested that mum massages my back, shoulders and legs; this may also help reduce the swelling in the ankles. My next appointment is in July.

11th May 2006
Went for the results on the tumours that I had removed from my leg and the good news is they were ok and nothing nasty, the scares are healing nicely and I have just got to keep putting the cream on the for about three months. I don’t need to go back unless I have any further problems.

12th May 2006
I had to see my E.N.T doctor today, I knew my ear was still infected as not only was I in pain with them but I had to see my GP yesterday and he put me on some different eardrops and antibiotics in the hope it would clear up the infection.

The ENT doctor had to vacuum both ears out before I could have a hearing test done, which I passed. He thinks I may have eczema in my ears.

What is eczema?
Eczema is a common skin condition that can cause mild to extreme irritation. When eczema is mild, it often causes dry, hot and itching skin. Eczema causes raw, broken and cracked skin. Scratching the irritated skin can result in oozing or weeping patches, which are prone to infection. The condition is not contagious and may flare up at anytime.

I have got to go back in six months but before if the ears start weeping again so that they can be vacuumed out.

I have got to go back in the back brace and go for a fitting on the 19th May, it's not so bad thou, I only have to wear it when I'm in a lot of pain and the tablets have not helped. I have also got my exams over the next few weeks so lots of study.

19th May 2006
Today I went for the fitting for my new back brace, as you will see from the pictures below, to make the mould for the brace I was wrapped in plaster of paris bandages, when this dried (only a few min’s) the mould was cut away from me. This procedure is messy but does not hurt. I was given a choice of colour and I was going for a really bright colour but then decided I best stick with white. The brace will be made from a solid plastic going all the way up my back and will be fastened from the front with soft straps. I will also need to wear a soft cotton vest/top, to stop the brace rubbing and keep me comfortable. I have been getting a lot of pain, especially in my legs, back and groin and it’s hoped the brace may help with the pain.

The brace will be ready on the 2nd June 2006.

Most children with scoliosis have mild curves — less than 20 degrees and probably won’t need a brace or surgery. Periodic checkups are needed; to be sure the curve doesn’t progress. Children who are still growing need checkups every three to six months to see if there have been any changes in the curvature of their spine. Wearing a brace won't cure scoliosis, or even improve the curve, but it usually prevents further progression of the curve.

A brace isn't effective unless a child wears it as prescribed. The brace will feel uncomfortable and awkward at first. After a couple of weeks, however, wearing a brace begins to feel normal. Your child will need help building a positive attitude about wearing the brace and maintaining a healthy body image.

2nd June 2006
Went to Pendlebury Children’s Hospital for my new back brace today but unfortunately there were some problems with it when Claire tried it on me (not touching where it should) so Claire is sending it back to have some remoulding work done. I now get the brace on the 23rd June ’06.

9th June 2006
Well, I have been out of hospital one year today and it feels great even if I am still going to hospital every week one year on, it great to be home.

I went for a dry land physio’ today my new physio’ is called Mark and after doing my physio’ he decided it would be a good idea if I was to see an Occupational Therapists.

What do Occupational therapists do?
Occupational therapists work with people who have a physical disability; they help people who have difficulties with practical everyday tasks. The aim of occupational therapy is to enable you to live as independently as possible - at home, or in employment and give advise on disability equipment, they are going to give me some equipment to help me put my socks and shoes on and just look at things that will help me be more independent really.

Mark also found a problem with my foot (I have fallen a few times) and he wants me to be measured for a Foot brace. I will let you know more about this when I have some news.

23rd June 2006
I received my new back brace today and it was just as well as mum and I decided we would go shopping for some new clothes for our holidays, unfortunately on the way the bus, which we were traveling on was involved in an accident. The bus driver braked hard and we were slung forward with some force resulting in mum hitting her head, shoulder and injuring her neck and top of spine. I suffered injury to my neck and spine too.

Both mum and I was in so much pain we had to go to hospital where the nurse looked us both over and told mum she had lots of inflammation around her neck, we were given pain killing tablets. The next the thing I remember was we were both immediately taken into resus and made to lie flat on a bed and the doctor put us both into a neck brace (see pic’ of me below).

We had to stay like this until x-rays were taken. We had both got whiplash and mum had a badly bruised shoulder too and given tablets to help take the inflammation down in her neck. We both keep applying heat to the neck to try and help to relieve the inflammation but the pain is still pretty bad at the moment.

20th July 2006
I am undergoing test at the moment to see if I have both NF1 and NF2 the blood test will take three months but I had my brain scan yesterday, the doctor had problems getting the needle in my veins but managed in the end. I should receive the results in the next week a so.

I have got a few hospital appointments next week so I will update next weekend and let you know how things are going.

27th July 2006
Went to Sheffield Children’s to see Susanne Davis today we chatted for about three hours and I was given a V.TENS PLUS to use for the pain and my Gabapentin was increased. I have been asked not to use the TENS until I have spoken with Mr Oxborrow tomorrow to make sure it will be safe to put near the tumours on my spine.

V.TENS plus unit tohelp with pain

How does TENS work?
Small pads are placed on or near the area of your pain and when turned on you will feel a soothing pulse that is sent via the pads through the skin and along your nerve fibres. And the level of the pulses are controlled by you the user at all times, which hopefully will suppress the pain signals to the brain. TENS also encourages the body to produce higher levels of its own natural pain killing chemicals called Endorphins and Encephalins.

Only use a TEN’s on medical advice as they are not suitable for everyone

28TH July 2006
Went to Pendlebury Children’s Hospital today for a check-up on my spine. I saw Mr Oxborrow who sent me for an x-ray I told him that I was in a lot of pain with my back and unfortunately he told me that my back had gone worse and that some new tumours had also grown on the spine. He mentioned further surgery in which he would place rods all the way to the top of my spine but I am not keen for him to do this at the moment as there are too many risk involved and at the end of the day he was not sure himself if it would make any difference at this stage, he wants me to have a bone scan and he is going to have a chat with the neurosurgeon to see what step they should take next.

I asked Mr Oxborrow about the TENS and he was unsure if it would be safe for me to use so I have now got to talk with Mr Thorn who is the neurosurgeon. Will let you know what he says.

7th August 2006
Still waiting to hear back from Mr Thorn to see if it is safe to use the V T,E,N’s Plus. I have been in a lot of pain so the sooner I can start using it the better.

I am also still waiting on appointment for the bone scan too so I will update when I have some more news for you.

24th August 2006
No real news to tell you at the moment as things are still very much the same, I am still attending hospital every week for physio’ and I am still having problems with my ears, which has been going on since last year. I have been going every week to see the E.N.T doctor who cleans my ears of the pus so that eardrops can get to the infection. Stuart (my E.N.T doctor) is really nice and said he is not letting me go until he knows this ear infection has gone this time.

If you have your Ears cleaned out at the hospital
Before starting treatment with eardrops, you’ll probably have your ear cleaned out by a specialist doctor. The cleaning will get rid of the bits of skin and pus that was blocking your ears so that the eardrops can get through to the infection.

The main symptoms of an ear infection with discharge are:

Pus coming out of your ear
Not hearing as well as you used to
Ear pain or discomfort.

You may get symptoms in one or both of your ears. You might have non-stop ear discharge, or your symptoms may come and go.

Then your doctor will want to examine your ear. He or she will shine a light into your ear and look down an instrument called an otoscope. This is to see whether your eardrum has a hole in it. Some doctors use a microscope to take a better look.

Your doctor will also ask you questions about your symptoms and how long they have been going on. This will help him or her to work out whether you have a long-term (chronic) infection or a short-term (acute) infection.

1st September 2006 Brain Scan Results
Mum got a call from the doctor at Pendlebury Children's Hospital to day to say the results of the brain scan were good and nothing to worry about, which was great news and he also told my mum that it was safe for me to use the V Plus T.E.N’s machine. I'll keep you informed how the T.E.N's works for me.

I am still in a lot of pain with my back, which is only to be expected really.

NF2 Blood Test You may remember I mentioned that my doctors at Pendlebury Children's Hospital were concerned that I may have NF1 and NF2 (very rare if I do have both) due to how some of the tumours look and the nerves they have grown on, well the blood test I had for this went wrong so unfortunately I have got to have it done again on Monday and will now have to wait until December before I get the results as it takes three months for this test to come back.

Physio' Still on going
Physio' is still on going and will be for some time yet, I am having dry land and physio' in the hydro' pool every other week. I have to do physio' at home everyday, which my family help me with.

15th September 2006
have been going to see Stuart (one of the E.N.T Dr's) every week since my last update and after having ear swabs done things are still no better with regards the ear infection so Stuart wants me to see this other doctor who I see next week (Tuesday). My ears are really bad at the moment so I'm not sure what will happen.

Marc my physio' measured me for my foot brace today and that should be with me in the next week. I am not sure what it is like yet only that part of it will go under my foot and in my shoe and the other part will go up my leg with Velcro straps around the leg.

Drop Foot
Drop foot is not a disease but a symptom of an underlying problem. Depending on the cause, drop foot may be temporary or permanent when I last saw my spine specialist he mentioned that the cause of my drop foot would be due to how the tumours are pressing on my spine and he was going to talk to Mr Thorn over this new problem. I’ll let you know more when I have received the brace.

27th September 2006
have been going back and to the hospital with this ear infection that as still not cleared up. Unfortunately I have now got a perforated eardrum at what the doctor said was the seven o’clock point, a perforated eardrum would normally heal by itself, although sometimes surgery is required. The doctor wants to see me again in a few months and if the ear is still perforated, an operation to repair the eardrum called a myringoplasty will be performed.

If you have a perforated eardrum, you may get the following symptoms in the affected ear:

Earache, or discomfort,
Discharge of liquid or pus from your ear,

A perforation or rupture in the eardrum (in other words a hole in the thin layer of tissue which separates the external ear canal from the middle ear).

Physio’
I am still having physio’ in the hydro’ pool weekly and when I went today, Marc my physio’ said that he was going to contact Pendlebury over the foot brace as the brace that I have been sent is not working and I need to be fitted for a different kind.

Mum also received a call over the bone scan to tell her that I should be having it done in the next couple of weeks. I will tell you more about the scan when I have had the appointment. The pain in my back has been really bad recently and I keep falling on the floor my legs are really bruised from falling.

6th October 2006
Health wise things are still very much the same the pain in the back is a little worse and I find my self getting very tired.

Still waiting on news about the foot/leg brace and bone scan.

11th October 2006
I have been getting very breathless recently so mum took me to see our family G.P today who sent me for a chest X-ray.

A chest x-ray allows a look at the inside of the chest. Rays that pass through the body to create a black and white negative type picture achieve this. A chest x-ray examination itself is a painless procedure and I was only in the X-ray department for about 10 min’s.

18th October 2006: Time for X-ray results:
My doctor told me that the chest it self looked clear but the radiologist had mentioned that he could see a tumour coming out of the right side of my lung so I have got to go and see a chest specialist next week for more test.

I have also got to have an ultrasound scan of my kidneys as I have been getting a lot of pain in my back, ribs and sides (I have had a kidney infection). This is to make sure that I don’t have any tumours on the kidney.

I am off to London for a few days, which I will tell you all about when I get home. But I am in hospital all day Friday having bone scan and back brace and foot brace made.

27th October 2006: Spent the day at Pendlebury Children's Hospital
My morning started by mum and me being picked up by one of my ambulance guys (Mike).

When I arrived at the hospital I went over to Gamma Camera Unit to have some EMLA Cream (magic cream) applied. This cream will numb the area to be injected to stop it from hurting me. I have to return to the department in an hour to have the injection.

My next stop was to see Clair who is making my new back brace and foot brace (Take a look at these cools pic’s).

What is a Bone Scan?
A bone scan is a very sensitive technique and when the radioactive substance is injected, it travels through the bloodstream and collects in your bones. The purpose of this study is to take pictures of my bones to help the doctor diagnose if my condition is affecting my.

After emptying my bladder, I was asked to lie down on a couch, and pictures of my bones were taken using a gamma camera. I did not need to take off any clothing. Only remove my jewellery. In order to get good pictures the camera will be close and I had to remain very still. The scan took about 30-45 minutes. My result will be sent to the doctor who requested the study

I see the doctor over the tumour on my lung on Tuesday 31st Oct' 06 and I am also having the ultra sound scan done on my kidney's the same day.

1st November 2006
I have had a busy few weeks and lots of hospital visits over the last few weeks.

I went to see the doctor over the tumour on the lung he was going to keep me in because he was worried that I may have a blood clot. But decided I could go home on the conditions that I came back the next day, urgent blood tests were done along with other test.

Back at the hospital the following day and I’m told the test results were inconclusive and that blood test came back slightly raised and that my breathing was very fast, yet again unsure if I should be kept in or not, I was at the hospital over four hours before he decided I could go home only to return the following day for a VQ scan (ventilation perfusion scan),which is a type of radionucleid scan which uses various radio-isotopes (substances which emit radiation) to assess the blood supply to the lungs and how well each part of the lung is ventilated. I had the VQ scan to check that I did not have any clots on the lung (pulmonary embolism).

Technique and preparation:
No specific preparation was required. This test took about 15- 20 minutes and was done as an outpatient. When I arrived in the department for the VQ scan it was in the Nuclear Medicine Department, which was situated in the X-ray department. I was asked to lie on a couch and a small needle was inserted into my vein. I then had a small injection of a radioactive substance. The radiographer then positioned the camera next to my chest and asks me to keep still. The radiographer stayed in the room as did my mum, he watched the images as they were displayed on a television monitor. Six or eight different views were taken, each one taking a few minutes. I also had to breathe in a radioactive gas through a mask, which was a little uncomfortable. The process only took about 15 minutes. The two sets of images are then compared. The only discomfort I experienced was that of the injection and the mask. The radiologist said he will write a report and send it to my doctor who asked for the scan to be done.

11th November 2006
I was so much pain this evening that dad took me to the A & E department, mum was out but when dad text mum to say he was taking me to the hospital as I was not so well, mum said she will meet us at the hospital. In the hospital blood test were done and urine test, again my breathing was very fast. But the doctor thinks the pain is down to the tumours round my kidney area. I was allowed home later that evening and told to rest and come back if things got any worse.

15th November 2006
I had to go and see my doctor to day, I received letter saying she wanted to see me over some test results. The scan on my kidney was good and there were no tumours in or on the kidney. But it did show that I had tumours on the tissues and muscles around them so I have got to go and see this other doctor now, which should be before Christmas. I have also been losing weight and have lost about 6lb over 4 weeks, but don’t know why. back at hospital on Wednesday.

Charity Ball
I have got my big charity Ball on Saturday, which I am really looking forward too. Keep an eye out on my About Me link to read news about how it went.

24th November 2006
Went to see my doctor yesterday as I have not been feeling very well and I have more and more tumours growing by the day at the moment. My doctor felt the ones in my chest area and said she is going to make an urgent appointment with the hospital doctor to see me. I also feel really tired at the moment. But I hope to go to the cinema with mum tomorrow as I have got the day off college and mum wants to do some Christmas shopping.

4th December 2006
No real news at the moment, still waiting to hear if the documentary will be going ahead, I will not know until the new year now. They want to talk to my hospital doctors now and hope to do that in the new year. Mr N Oxborrow phoned me yesterday and explained to him what the film crew hoped to do and he said he was happy to help.

News on the NF2 Blood test
I am pleased to say that mum received a phone call this week from the hospital to say the blood test results were back and I don't have NF2 only the NF1, which was great news.

I was at Sheffield Children's Hospital today seeing Sue, Toby was our ambulance driver for the day and we did not get lost this time. Sue took mum and me to this relaxation room to make a tape but mum went out because we both kept laughing. I also saw Dr John Godard, he was not very well and I think he needed to see a doctor him self, anyway Dr Godard wants me to try Gabapentin 300mg for the pain and he will call me in a two weeks to see how I am going with them.

I have now seen the hospital doctor
Today I saw the hospital doctor over the pain in my tummy and about the new tumours that have grown around my kidney area. He wants me to have an colonoscopy in the new year, this is due to some bleeding that I have been having.


Clair makes me this cool outfit, what do you think of the pixie hat?	Clair wrapping plaster round me to make the mould for back brace.	I have to stand still while the plaster dries.

Now dry and ready to come off. Back brace Mould.	Back brace mould	Foot & Back Brace Mould ready to be sent away to be made.


Clair is wrapping plaster round my leg to make the mould.	Leg now covered.	Time for Clair to cut the newly moulded cast off (good job I washed my feet this morning).