Kirsty’s Story

2005-2006-2007

My fight against a condition called Neurofibromatosis (NF1) and scoliosis continued.

Time for my spinal surgery.

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.

On my first operation the approach for my scoliosis surgery was done through an incision from the side of the body. This technique is better for severe curves, including rigid curves in adults, but has greater surgical risks than posterior surgery.

Time for the nerve impulse electrodes to be stuck to my head, this is done so the doctors can detect if a nerve is affected during the operation, which is what happened on my first op’. There is absolutely NO pain involved!! Getting the glue out of my long hair after is the worse part about having this done. A little tip, use nail varnish to try and remove the glue when your are feeling up to having your hair washed, believe me it helps.

In recovery

Recovery 

 H.D.U 

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  

2006

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 was given a Certificate for being so brave.

 
What is Magic Cream?

The real name for this cream is “Emale Cream”. The cream is put onto your skin and a soft see through plaster is placed over the top of the cream. It is then left for about 30 min’s while the cream works. When the time is up, the cream is wiped off the area of skin, this area will now feel “numb” and will not hurt when you have the needle.

Mr Oxborrow also wants me to have an urgent MRI Scan of my brain and full spine scan. This will be done within the next two to three weeks. He also asked me to make an urgent appointment with my GP as I have been bleeding from my bottom.

8th February 2006

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

 
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.

Leg bandaged up

Bandage off

Dressings under the bandage

The operation took two and half-hours, my leg is very painful at the moment and very heavily bandaged and I have been told not to do very much for the next three weeks. I will get the results when I next see the doctor in six weeks.

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.

I have to lie still while the plaster dries

The plaster is now cut away

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.

Foot Drop
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).

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).
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.

Just time to go and have a drink before I head back Gamma Unit. I was given an injection, which contained 550 MBq radioactivity into a vein in my arm. I had return to the Department 2 hours later for the scan. With two hours to kill, I decided to visit to the nurses who looked after me when I was very poorly last year. Mum and I also went an had some dinner.

Back to the Gamma Unit for scan (see pictures below).

One of the play leaders explains what is going to happen to me.

Going inside the scan.

Trying to keep still while the scan is done.

 
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.

Just had a needle

Lay in A&E

Results Back
The doctor phoned to say he was happy with the VQ scan (no clots were found in the lungs). But that he now wants me to have some lung function test done with my breathing being so fast and my lungs being so small.

14th November 2006
I received my new foot/back brace today take a look at the pic’s below, how cool are they?

Foot Brace

Clair puts back brace on me

Back brace

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.

What is a colonoscopy?
A colonoscopy is test where the doctor looks into your large intestine or large bowel.

A colonoscopy is a thin, flexible, telescope. It is about as thick as a little finger. It is passed through the anus and into the colon. It can be pushed all the way round the colon as far as the caecum (where the small and large intestine meet).

2007

9th January 2007: Lung Function Test
I went for The Lung function tests today, which are being done to help determine the cause of my shortness of breath, which I have been getting for a few months now.

Lung (or pulmonary) function tests test show efficiently I am breathing. I was asked to put on a nose-clip so that all my breathing takes place through my mouth, then I had to breath into a mouthpiece attached to a machine that measures the air that I breath in and out.
I had to breath in a special mix of oxygen and carbon dioxide to see how well my lungs are absorbing the oxygen and excreting the carbon dioxide.

I had to take deep breaths then exhale as fully as possible, I had to keep repeating the test over and over again as they were not happy with the reading.

I had a few different breathing exercises to do, which did make me feel dizzy and breathless.

I had to stay and see the doctor for the results of the test. The doctor said that he was not sure what was going on as the lung function test came back with some abnormalities but he was still not sure if it was anything to do with the tumour on the lung or not. He thought the tumour was on the outside of my lung when he first looked at the chest x-rays but after having the Gamma scan he said the tumour is inside the lung and that this will be kept an eye on. He is now going to have a chat with another Chest Specialist to discuss the test results and to see what he should do next. He will phone and let me know.

11th January 2007: Sheffield Children's Hospital. I went to Sheffield Children's hospital today to see Dr Godard, Sue and Rebecca who are all part of the pain team. After having a chat with Dr Goddard and the team about how my pain had been Dr Goddard decided that I should also take Ketamine to help with the pain, I only have to take this when the pain is bad and no more than twice a day. Ketamine is a powerful anesthetic drug; Ketamine also works as a pain killing drug. If things don’t get any better I may have to think about going on some much stronger medication. Susan also gave me some more advice about the V T.E.N’s machine that they gave me last time. I have to go back next Thursday to do some more relaxation exercises with Rebecca. I have also seen my E.N.T Dr again this week and unfortunately I still have the ear infection and using antibiotics and ear drops to try and clear this up and I go back net week.

21st January 2007: I had a few hospital appointments again last week, paying visits to Sheffield Children’s, St Mary’s and Wythenshawe Hospital. At Sheffield I saw Susan who is part of the pain management team and physiotherapist. Mum and I both took part in some relaxation exercise, which was really good after the bad journey we had getting to the hospital, the weather was so bad, we got stuck on the moors and could not ring any body as we could not get a signal on any of our phones, the ambulance guy (Keith) was saying we may have to go back as the weather was getting so bad.  We did arrive be it 45 min’s late and Susan did the Laura Mitchell Relaxation Exercise and gave me a tape to bring home with it all on. She is also trying to change my spinal mattress for me. We got home at 7.15pm feeling really tired.

St Mary’s Hospital: I saw both Dr Sue Huson and Rosemary Abbot, after telling Dr Huson what had been happening she felt it would be a good idea if I had a PET Scan. PET stands for Positron Emission Tomography.  This is a fairly new type of scan developed in the 1970s.  It can show how body tissues are working, as well as what they look like. The scan produces three-dimensional, colour images of the body using radiation. It can be used to diagnose a health condition, or find out more about how a condition is developing. It can also be used to measure how well treatment for a condition is working. A PET scan works by detecting radiation inside the body, and makes images that show how the radiation is being broken down. Radiation is given to the body safely as a medicine called a radiotracer, so it goes to the part of your body that needs to be examined. The level of radiation is very small, so it doesn't damage the body. Dr Huson is also writing to the plastic surgeon Mrs Brains about having the tumours removed from my neck and breast as not only are they both new they are growing and painful.

Wythenshawe Hospital: I was at Wythenshawe for my physio’, which went well and over my continued ear infections, both ears are feeling ok at the moment after my last lot of antibiotics. I am at the hospital everyday again next week so will try and update again next weekend.

24th January 2007 Tomorrow I'm having the colonoscopy test, I will be admitted to hospital as a day case as I am being sedated to keep  me comfortable and to help me relax during the examination. Mum is going to stay with me and the ambulance guys said they will make her lots of brews while she is waiting around. Friday I am at Pendlebury Children's hospital so I will try and update over the weekend and let you know how it all goes.

Colonoscopy Test Mark, one of my ambulance guys picked mum and me up this afternoon to take me into hospital for my colonoscopy test.   When I arrived at the hospital, the nurse gave me a gown to change into and spoke to me about the sedation that I was about to have. A Colonoscopy is nearly always done with sedation and painkillers because it would be uncomfortable without. Because of the problems I have with needles the nurse put some magic cream on my arm in two spots, this was meant to stop the needle from hurting.  After two doctors having four attempts each at trying to get the cannula in my arm they had to send for the theater doctor to have a go. My arms are so bruised, I was crying with the pain (not like me), the nurse was almost crying and so was mum, the doctor said my veins are so bad they just kept blowing every time they went in with the needle. The theater doctor said the only place left to go now was in the wrist on his first attempt the vein went again. Mr Crampton came in to see if he could help and kept saying he was sorry that I was having such a bad time. The only place left now was my other wrist, and at last the doctor managed to get the cannula in, now both my arms are black from the amount of needles I had (ten in all). Mum gave me a kiss and said she was going to the shop in the hospital to buy me a soft toy to add to my collection for when I came round.

Why I had my colonoscopy? I was advised to have a colonoscopy due to symptoms such as bleeding from the anus, pains in the lower abdomen that I was getting.

What happened during my colonoscopy? I had my Colonoscopy test done as a day case. I was given a sedative to help me to relax. This was given by an injection into a vein in the back of my wrist. The sedative made me feel a little drowsy but did not 'put me to sleep'. It is not a general anaesthetic. I had to lie on my side on a couch. The doctor (Mr Crampton) gently pushed the end of the colonoscope into my anus and up into my colon. The doctor could then look down the colonoscope and inspect the lining of my colon. This was then transmitted through a camera attachment onto a TV monitor for the doctor to look at. Air was then passed down a channel in the colonoscope into the colon to make the inside lining easier to see. At the end of the procedure the colonoscope was gently pulled out. The colonoscopy took about 30-40 minutes. The doctor said he would send a report but looking at the results everything looked ok, which was great news. Jason, one my cool ambulance guys stayed late to bring me home and make sure I was ok “thanks Jason”. My arms are really painful and black and blue from the doctors trying to get the needles in. Mum bought me a dog (not a real one), which is really cool.

This is one of arms, my other is even worse.

Pendlebury Children’s Hospital: Mr N Oxborrow 26th Jan' 2007 I saw my favourite doctor today Mr N Oxborrow and while I was waiting I saw my favourite nurse (Lesley), she is really cool and very funny, and I took some picture of Lesley on my mobile.

Told you I would put you on my site, hope you like it Lesley.lol..

Mr Oxborrow sent me for an x-ray, when I got back I went into see him, looked at the x-rays and was really pleased that my spine had not gone any worse at the top and said the spine had fused well and just looked like solid piece of bone now, if things stay the same I will not need another op’ on my spine. He than asked why I was using the crutch, I told him about the drop foot and he asked me to take my shoe and foot brace off so that he could have a look. He did a few tests and said “yes” you do have drop foot and wanted to know how long it had been like that? He than called to another doctor and asked him to arrange for an urgent scan of the bottom of my spine and pelvis area to be done. He is worried that I may have a tumour at the bottom of my spine below the mettle work that he did. My drop foot was very sudden really and this would answer why I have been getting so much pain in my lower back and groin area too. He asked when I next see Mr Thorn, which is in April and mentioned that he had spoken to Mr Thorn about the pain that I was in, Mr Thorn had told him that I have multiple tumours all over my spine and he was not sure what to do or if removing any of them would help. I have got to go back and see Mr. Oxborrow in six weeks for the results.

31st January 2007 Hospital phoned, I have got to go for my scan on Friday the 2nd February 2007

2nd February 2007 My scan went well and was done by Ken. I have known Ken for a long time he is a really nice guy. Ken said it will take about a week to get my results sent to the doctor but I'm not going back to see Mr. Oxborrow until March

2nd March 2007 Dr Huson as been away and will be writing to the plastic surgeon Mrs Brains about having the tumours removed from my neck, tummy and breast as not only are they new tumours they are growing and painful. She will also arrange for me to have the PET Scan done very soon too. The pain in my back has been really bad and I have not been getting to sleep until after 2am, I have been taking more of the Ketamine, which helps but makes me feel dizzy and bit funny. I am also waiting to hear about getting a spenco mattress and electric bed, which doctors think may help me. Still going to the hospital weekly and Ruth my physio' is really good and we have some fun in the pool, which you may get to see in my TV documentary.

22nd March 2007 Sorry, I have not updated for a while but it's been a bit mad here, the boiler burst in my bedroom and now my room is gutted. I lost four of my teddies, which I was more upset about than anything else. The news of my boiler bursting even hit the press. Hospital is still the same, the tumour in my neck has grown since January so I have now got to see this other doctor and I get the results about scan I had tomorrow, Friday. I have filmed the short documentary for Well Child, I had a camera follow me around for two days, it is going to be called "The day in the life of Kay" and will be going on the community channel in May some time. After the crew had gone home on the Wednesday we were all really tired, I was going to go to bed but as I was not feeling so well mum asked me to stay down so that she could keep an eye on me. I am so glad I did because about an hour later we heard this funny sound coming from upstairs what sounded like air in the pipes, Waaaaaaaaaaaaa, When dad and me went up the boiler in my room had burst letting out boiling hot water all over my bed down the wall on to the carpet. Chris (my brother) managed to get the water shut off and got this guy who he knows to come out and have a look at it. He said that I was not only lucky that I was not in the room at the time but the boiler had been giving out toxic fumes, which could have killed me in my sleep. My bedroom is gutted, we had to get a new boiler, we are had the boiler moved into the loft for safety reasons. I was so upset as my teddies got it too and are now ruined. The story of my boiler made the Sunday paper, see link.

26th March 2007: Results of M.R.I Scan: The documentary I took part in is on sky, the community channel on the 21st May but I don’t have a time slot yet. I will let you know when I have more news. It is only going to be on TV for about 7 min's but you can see more on the internet. I went for the results of my scan last Friday, the news was not good, and my doctor told me that I have a new cluster of tumours at the bottom of my spine, which has caused the foot to drop. He said one of the tumours was over 3cm and the cut off point was 2 ½ cm, he was also worried that the tumour in my neck had grown yet again and the one in my lung was giving him some worry. He phoned this other doctor on her mobile to tell her about the results and she wants to see me next week when she is back in the hospital, in the mean time she wants all my scan reports getting together for her to look at. So I’m not sure what will happen next until I have seen this doctor next week. My spinal doctor is really cool and a really nice guy, he asked how old I was now and when I told him 16 I thought he was going to say that it was time I went over to the adult hospital. But he said he would not do that to me and that he would continue seeing me at the children’s hospital until I was 20 years as an out patient, but if I needed more surgery that would have to be done at a different hospital. Below are x-rays of my spine before surgery and again after surgery with the rods in: I you look carefully you can see the curve in my spine This is from a different angle X-Ray showing the rods X-Ray showing the rods 2nd April 2007 Received a letter from Dr S Huson this morning telling me that she has written to Dr Hules regarding the PET Scan. PET Scanning has been shown to be very useful for people with NF1, to show whether any of the neurofibromas has the potential to turn nasty. Dr Huson said is she is not worried about any of my neurofibromas at the moment after examining me in clinic a few weeks back. Well, it is my Birthday on Thursday, 5th April and I hope to have a brill time as I have in hospital for the last couple of Birthdays. I know mum and me are going out but mum is not giving much away, lol, I will tell you all how my day went over the weekend. 5th April 2007 Well, it's my Birthday today and it's great not to spend it in the hospital. I received a letter about the PET scan this morning along with lots of Birthday cards, I go for my scan next week and will let you know more about that soon. 10th April 2007 Mum phoned to confirm my appointment for the PET scan only to be told it had been cancelled Dr Brennan is going to see me as soon as she has reviewed all the scans etc. Dr Huson and Dr Brennan feel that to do the PET scan before that may complicate things further. Also that all the Doctors involved in my care need to liaise (Mr Oxbarrow, Thorne, Dr Barber, Dr Brennan and Dr Huson, Dr Brennan is going to coordinate this). So I will let you know when I have some more news. Mum is a little upset by it all as I have been getting a lot of pain in my chest and getting very breathless. I had a great Birthday, which you can read about on my about me link. 19th April 2007 Unfortunately the hospital did not go so well today, Mr. Thorn my doctor put the scans up for me to see and told me that I have at least one tumour on every nerve that is coming out of my spine some of which are above 4cm. He also thinks that I may be starting with foot drop in my other leg and will need to wear a foot brace on that leg soon. Mum asked him about trying to remove some of the tumours and he said that it would cause more damage if he did and he was not sure if he could remove any. I took pictures of some of the scans,see pic's below (sorry if I upset anyone by these pictures). Scan looking from side Scan looking down the spine The doctors points to the tumours I don't really understand the scans. But Mr Thorn said all the round bits and funny shaped bits that you can see are tumours and that the scan is kind of taken in slices. Mr Thorn wants me to have a lung scan and if the tumour in my lung has grown then that will have to be removed. 3rd May 2007 I had to have the lung function test repeated today so the doctor could see how efficiently I am breathing since my last test. What I had to do for the lung function test: I was asked to put on a nose-clip so that all my breathing took place through my mouth, then I had to breathe through a mouthpiece attached to a machine that measured the air that I was breathing in and out. I found this really difficult and was asked to repeat the test a number of times. On one of the tests I had to take a really deep  breath then exhale as fully as possible to measure my Forced Vital Capacity (FVC); this I was asked to do a number of time because I was not getting the peak that they wanted on the chart. I also did a test where I had to breath in a special mix of oxygen and carbon dioxide to see how well my lungs are absorbing the oxygen and excreting the carbon dioxide. I then had to go and sit in small chamber for some more breathing test. I had to sit in a Small Chamber similar to this one How the lung function test will help Lung function tests are used to help determine the cause of shortness of breath and other breathing difficulties. They can help to differentiate between different forms of respiratory disease, such as obstructive conditions like asthma or problems caused by infections such as PCP. I have now been put on the waiting list for a MRI Thorax scan to see if the tumour in my lung as grown. I go for a MRI Brain scan on Tuesday (8.05.07). 8th May 2007 An MRI scan usually gives the clearest scan of the brain and spine. I had to have an injection of a dye, called contrast medium, to make the MRI scan clearer. I was not happy about the injection as when my mum phoned the x-ray department they told her I was not having the dye so would not need an injection. When the doctor came in the room and pulled e from the MRI machine I thought he was joking when he said I was going to need a needle. So yet again the doctor had problems trying to get the needle in my arm, which left my arm with several bruise’s and me feeling really dizzy and sick. 9th May 2007 Today I was at hospital for a weight check-up and hydro’ therapy, I had lost about 3lb in weight so was told that I must start having the scandishake everyday as I am not eating so well. Hydro’ got cancelled due to a problem with the pool. I am back at the hospital next week. I received a call to say my electric bed will be delivered tomorrow, "can't wait". 10th May 2007 Well, my bed came and then had to go back as it was too big for my bedroom, I can't believe it as they told me it would fit. I have now got to see if the O.T's can get a smaller one. I will keep you informed. I have got a few hospital appointments next week, so will update when I have more news. Please take the time to watch the video clips on my front page or N.F link, I am sure anyone with NF will find them interesting, there is video clips of: My Day, mum's interview, my interview and an interview with my N.F doctor. 20th May 2007 I am having so many problems with getting my electric bed at the moment and all because the wrong size was ordered. I have got lots of hospital appointment over the next few weeks so I will up date as soon as I can. 12th June 2007 I have still not got my electric profiling bed this is all because the OT's ordered the wrong size bed. I saw Dr Crompton the Gastroneterology doctor who said my results came back ok but that he wanted me to try docusate sodium capsules 100mg x2 at a night and see if that helps with the problems that I am getting. The tumour in my neck has continued to grow and I have to see this other doctor on Thursday with a high possibility of having to have surgery on it. The test that I had done on the lung are still inconclusive so I have to have more x-rays in July and at that point if the tumour in my lung has grown then I will need to have part of my lung removed. My E.N.T appointment went ok too and I don't have to go back until later in the year unless I have any bad ear infection. I still have to continue going for physio' every week, which I don't mind. I will let you know how things go on Thursday. 15th June 2007 Thursday did not go so well, I have  got to have surgery on my neck, arm and side. I will be in hospital a couple of days depending on how things go as they may be a problem with the surgery on my neck as the doctor is not sure what nerves the tumour is attached too yet. Surgery is planned for when the doctor gets back from her holiday in July. Mum also received a call to say that Mr Oxborrow had ordered an urgent MRI scan of my pelvis, which I think is due to the results of the Nerve conduction test, we will just have to see. Mr Oxborrow thinks I may have tumours in my pelvis too. I have to go for my MRI next week. 1st July 2007 I  had my scan scan last week and the great news is I did not have to have any needles, which I was really pleased about, I have not got the results yet but I will let you know when I have any news. I have also got my new electric bed and spinal mattress so I am managing to get some sleep at long last. 24th July 2007 I have not had any news about the scan I had so I think that is good news. I should have the date for my surgery in the next week a so when the doctor gets back from her holiday. The visit with Prince William and Prince was great please go to my About Me link to read more about that. I go for the fitting of my other foot/leg brace in August, I had to put the date back due to other hospital appointments. 31st July 2007 I got good news from my lung doctor Mr. P Barber today; he said that my lungs were looking good at the moment and that he thinks it best if he left things alone so does not plan to do surgery for the time being. But he wants me to see a lung Physiotherapist to give me some breathing exercises to do and see if that will help with the shortness of breath. Last night I got very breathless so my hospital electric bed came in very useful and helped my breathing tremendously by being able to put the bed head up, which helped relieve my shortness of breath. I will let you now how the physio' goes. 14th August 2007 I have received news from the hospital that my surgery will be on the the 29th August '07, I go in hospital on the 28th August '07 ready for surgery on the 29th August, I am not sure how long I will be in for yet but it should  only be a couple of nights. I will get conformation on Thursday when the doctor is back. I start with physio' on my lungs tomorrow, the physio' said he would try and work it round my other physio' so that I don't have to come another day for it. I also received a call over the scans that I just had to say the results have been sent to Dr Hughes and Dr Huson who plan to see me on the 12th September '07 and will then tell me what happens next. 23rd August 2007 I have been getting a lot of joint pain and bruising for no apparent reason especially on the legs, which I mentioned to my physio’ today, she told me to try rubbing or massaging the joints with some anti-inflammatory gel and to try some gentle exercise. Heat from a hot water bottle may also help relieve the pain and stiffness. If things are no better by weekend she wants to make an appointment with my GP I am going to use a Mediflo Duo to help with my breathing a Mediflo Duo (see pic' below) is a dual use incentive spirometer that can be used for both Sustained Maximal Inspiration (SMI) and Positive Expiratory Pressure (PEP) simply by turning the product round and re-attaching the corrugated tubing. During SMI the flow-regulation lid allows the unit to be adjusted according to the my functional capacity. I have got to try and use this three times a day.   This is a Mediflo Duo I go for my new leg/foot brace on Friday, I have got to have one fitted to each foot so I am going to ask if they can make it so they will fit into in trainers this time. 24th August 2007 Went for the fitting of my new leg/foot brace's today, I had a pleasant surprise as Mike who I have spoken about before did the fitting, I have not seen Mike for over three years so it was great to see him again. My new brace's will be ready on the 26th September, which is day after my brother's 21st Birthday. Please take a look at Mike's web page by clicking the link to learn more information on what an Orthotist does. 7th September 2007 My operation went well, I was only in hospital a couple of days, I had four tumours removed all together and mum was able to stay with me. I am still in some pain but that is only to be expected. I have got to go to the hospital on Tuesday due to having a bad ear infection again and I am at the hospital for my scan results on Wednesday. Still having to go to physio' every week and my breathing is still bad so my physio' is writing back to the chest doctor for more advice. Mum set up the just giving web page for me so can I ask if you will very kindly visit and consider making an on line donation, this is very safe , Thank You. 12th September 2007: Scan and nerve conduction results I went to see Dr Huson (my NF doctor) today for the results of my nerve conduction test and pelvic scan results. Unfortunately the nerve conduction test showed that I do have damage to the major nerves that work my legs and feet, which is why I have developed the foot drop in both feet and pelvic scan showed that I have tumours all round and on the major nerves in the pelvis, which is why it’s been decided that I should have a PET scan done. Dr Huson said if any of the tumours show up as a grade 3 then it may mean a trip to a hospital London, which I don’t really mind if it helps doctors to understand NF a little more. But it’s not all bad news as when Dr Huson looked at my feet they had not got any worse so my physio’ is working well. Dr Huson did talk about contacting a doctor in the USA to ask if I would be suitable for the drug trial, but I have got two years left at college so we decided we would leave that idea for the time being and see how things go with the PET scan and my foot drop first. What is a PET scan? PET stands for Positron Emission Tomography.  I was meant to have this scan a few months back but it was cancelled. But now due to the pelvic scan I had it’s now been decided I should have the PET scan. The results It will take about two weeks for my test results to come through.  The scan will be examined by a specialist in radiology or nuclear medicine and a report typed up.  The report will then go to my specialist (Dr Huson), who will contact me if need be. 26th September 2007 Today was a long day at the hospital as first I had to attend Hope Hospital to pick up my foot brace’s that Mike Gilligan made for me (see pic’ below). Mike is an Orthotist and if you would like to know more about Mikes products please click the picture of Mike and Me below. For all those who are new to my story and have not managed to read my full diary, Mike and I go back a long way as Mike was the very first person to make my back brace when I was only 9 years old. This is Mike My foot Braces After we had finished with Mike it was back in the ambulance for a trip down to my local hospital for my physio’. Mum and I left home at 8am and did not get back home until after 5pm so we were both really tired. I started being sick again and when I saw my doctor yesterday he said that if it continues I will have to have the camera into my tummy again but in the mean time to double up on my tablets. Other than that I am doing well and just waiting on the date for my P.E.T scan at the moment. 30th October 2007 A lot has been happening recently, the good news being the recent tumours that I had removed were not nasty, which was great news. The doctor looked at my foot as I had been getting a lot of pain in it and she said that I have a tumour that is deep into the bone and that it would be a good idea to have it removed, which I agreed with. But not before Christmas as I hope to take my driving test in December, the doctor said that would be ok as long it did not get any worse. She also looked at my tummy as I has been getting a lot of pain around the kidney area so she decided to arrange for me to have an ultrasound scan of my kidney’s to make sure I don’t have an tumours on my kidney’s. I have been having lots of falls recently, I fell down the stairs at home, fell at college a few times and my ankles have been swelling so I have got to see about having a full leg brace. I have my P.E.T Scan next Friday and will let you know more after I have had the scan. What a PET scan is P.E.T stands for Positron Emission Tomography.  This is a fairly new type of scan. It shows how your body tissues are working, as well as what they look like. The test involves having an injection of a small amount of radioactive material, using the signals from this radioactive injection a scanning machine can build up a picture of the part of the body. PET scans can be used to look for abnormalities in the tissues. PET scans are not a routine test and are usually only used for the small number of patients for whom other types of scans cannot give all the information their doctors need. 10th November 2007 Just to let you know my PET scan went ok, I had to lie in this quiet room for 45+ min's on my own while the radiation that they injected went round my body and then they took me in the scan room, the scan took over an hour as they scanned from head to toe. They would not let my mum come in with me, which I was not too cool about as I have never been in the scan room on my own before mum's always, always come's in with me, I also forgot to take my teddy waaaaaa, I pleaded with them to let my mum come in this other room while they did needle and they agreed to her doing that. I have got two to three weeks wait now before the results are back. If anyone is having a PET scan and would like to know more about the scan please e-mail me or sign my guest book and I will do my best to answer your question's. 1st December 2007 My doctor is having a meeting next Wednesday over the results of my PET and will phone my mum on Thursday with the results and tell mum what happens next, I will let you know. My mum received a call from my GP today asking her to bring me to see her this afternoon, when we got there my doctor called me in and said she had received a letter from my physio' over my knee problem.  My physio' wants me to have an MRI scan of my knee due to the amount of falls I have been having, I now have to wear a brace on both knees due to a problem with the ligaments being damaged. My doctor is sending a letter to the orthopaedic surgeon to inform him of the new problem. 14th December 2007 I am sorry I have not let you know the results sooner. But my gran was taken into hospital with a chest infection so it’s been a little worrying here, I am pleased to say my gran is due home some time today after being in hospital two weeks. The results of PET scan Mum received an e mail from my NF doctor, which read: Good news-there is nothing obvious to worry about. I am about to go to a meeting but will ring next week to go over things and catch up. Sincerely Sue H Today I had to have an ultrasound scan on my tummy/side due to the pain that I have been getting, the good news being I don’t have any tumours on my kidney but they found a cluster of new tumours in my tummy in between two major nerves that cross over each other, they are not too big at 1.5 cm in size but with NF tumours it does not matter how big they are they can give you some real bad pain. My doctor will now be informed of the results and I should be told some time in the New Year what they decide to do about them. I have got to see a orthopaedic doctor in January over my knee problem so will let you know more about that when I have seen the doctor. Hope you all have a great Christmas and New and that 2008 will bring you lots of happiness. Click to read 2008-2009

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