This is my Diary

October 1998:
In October 1998 and during my annual N.F check-up at my local hospital, the doctor was not happy with the way my spine was looking. He sent me off for an x-ray of my spine and said he would see me in 12 mouths. Four days later mum received a phone call from the hospital doctor, he had looked at the x-rays and was not happy with the results, and mum was to bring me to the hospital the next day.
I remember mum was upset by this news, I did not know what was wrong, I felt fine.
I got the day off school “yes!” when we went into see the doctor he said that the x-ray results shown a curvature in my spine, he was an Orthopaedic Surgeon and he thought it best if I had a scan of my spine to see what was causing the curve. We went home and waited for the appointment to come.

23rd December 1998:
Time for my scan, I thought the scan room looked pretty cool, lots of gadgets, all I had to do was lie down and keep very still for 1 hour (a long time for me to keep still). I was aloud to take my own music into be played, guess what I took? The Smurfs Christmas Hits, the doctors was laughing at it. Mum was aloud to come in with me; but they would not let one of my teddies into the scan room (Adam), due to the mettle that was inside him, so the doctor propped him up at the window to watch me.
Scan over and time to go home, they would not tell us the results until the doctor had looked at the results.

January 1999:
I was back at the hospital for my results. The news was not good. The scan shown that I had a number of tumours on my spine and one was pushing my spine to one side causing scoliosis. I was told not to worry that it was only a small curve, but that under the circumstance’s I was to be transferred to Pendlebury Children’s Hospital.

March 1999:
I went to Pendlebury Children’s Hospital. I saw a really nice doctor called Mr Spillsbury (he was very funny) he did loads of test on me and sent me for more x-rays of my spine. Then he had a long chat with my parents. It was decided that I should have a second scan of my spine before any decision was made.

May 1999:
Back at the hospital for my scan, same routine as last time. Only this time I took my NOW 47 CD with me.

June 1999:
I was back to see Mr Spillsbury for my scan results.
Mr Spillsbury said that the scan had confirmed the presence of numerous tumours at the lumbar junction extending well into the sacrum. Has I felt ok he felt it best that he just kept an eye on things for now to make sure things did not go any worse. I had lots of visits to hospital during the rest of the year.

December 1999:
My brother arranged for me to go to Lapland, I had always wanted to go. My brother said I had been so brave that he wrote to Wise upon star and told them all about how brave I had been and to ask if they could make my wish come true and they did. I had a great day. Thanks goes to my brother and everyone at Wish up on a star.

March 2000:
I was back at the hospital. I still felt fine, but this time the news was not good, the doctor was concerned that in the last four months my spine had curved a further 9 degrees. He was very keen to operate; I was only nine and did not really understand what was happening. We were due to go on holiday and I did not want to miss it (I was looking forward to going away). We did not go away last year due to all the hospital appointments I had. Mr Spillsbury decided that I could go on holiday and said he would do the operation when I came home.

Back home:
A couple of days later the phone rang, it was the hospital to say it had been decided that I should wear a Boston brace to help support my spine until the operation was carried out. Back to the hospital for a fitting and two weeks later the brace was ready. I walked into the room not knowing what to really expect, the brace is really hard and goes around my body. I was told I would have to wear the brace 23 hours a day and that it would take about 8 weeks for me to build up to it. It took me three days, my doctor was really pleased with me, my mum, dad and brother was really proud too.

Holiday time:
I was really sweaty wearing the brace, imagine being Spain with temp’ reaching 102 and wearing a plastic jacket with an under shirt on too, believe me, I was hot. I got to take it off when I went swimming GREAT!

Number of braces:
I am now on my third brace, I have grown a lot.
The brace is working and keeping my spine supported and surgery is now planned for when I am 13. I know I am going to be in a brace for a very long time, I don’t mind if it helps. I have been told I will have to wear the brace for at least two years after surgery too. The following advice may help you if you have been told you must wear a brace too.

Am I in pain?
“Yes” Some times I get a lot of pain in my back and legs I also get very tired. I cannot bend down so my brother helps me a lot with anything I cannot do. I thought I would look fat in the brace, but you cannot tell I am wearing it and it holds my belly in.
I have just started at a new school and I was a little worried about it at first but my brother attends the same school and he has promised to look after me.
My brother puts my brace on for me and I really love my brother he is simply the best.
I won the Child of Achievement award this year for coping so well; I had a wonderful day London when I went to receive my award.

August 2001:
Getting some pain in my groin when walking, and some new lumps have appeared, one on my foot and at the back of my ear My mum made an appointment with our family doctor who thought I may have had a viral infection, but was asked to come back in three weeks if things were no better.

3 weeks later:
Lumps are bigger now, so the doctor sends me off to the hospital to have them looked at.

October 11th 2001:
Doctor not sure what is going on, and wants a second opinion. In the mean time I am off to Spain for 7 days. When I get home I have to go and see my family doctor things are no better.

13th November 2001:
Back to my local hospital the nurse tells me that I have lost weight. When I go in to see the doctor he was surprised to know that I had not seen the Orthopaedic doctor so he phones him to tell him the situation and I was given an appointment for the 7th January 2002.

14th December 2001:
I am at the Manchester Children's Hospital to see my favourite doctor Mr. Spillsbury, I am off to x-ray to have my spine x-rayed. I then go in to see Mr. Spillsbury he is really nice and always has a smile on his face.

I mentioned my groin to Spillsbury and he had a look at it. He was not very happy with my hip, so I have got to have a bone scan in the January'02 and MR scan done of my spine in February 02. He did have some good news, my spine had not got any worse since my last visit, which was great news: The brace is doing its job and stopping my spine from getting any worse. Mr. Spillsbury is really happy with the x-rays and gets one of his doctors to come and have a look at it. My next stop is to see Mike, he makes my braces for me Mike is really nice, I have grown so I need a new one. Mike tells me it will be ready in January '2002.

I have got a new friend to bring me luck when I go to the hospital, His name is Scott, and he was sent to me by my friend Bill who lives in Scotland. I am sure I will have lots of luck off him in the New Year.

Nozy belongs to my brother, he has had this teddy since he was a baby and he lets me take Nozy to the hospital for luck whenever I ask him.

7th January 2002:
I went for my bone scan today, they used a special scanner called a gamma camera. I was given a small amount of special fluid called a tracer, which will show up my bones. The tracer contains a very small amount of radiation, which the gamma camera can “see” and builds up a picture of me. I had to have a small injection to put the tracer into my blood stream; they use a special needle called a butterfly. Mum put some magic cream on the back of my hand one hour before, so the needle did not hurt. I had to lie very still on the bed; I did not feel anything when the pictures were being taken. Mum came in with me.

21st January 2002:

Today, I went for the scan on my spine; it was to see if the tumours had grown from last time. The doctor said that I needed a new body brace, so off to see Mike for my new one.

22nd January 2002:

I went to Pendlebury for my results, the results are good, and there was no change to the size of the tumours on my spine. I have got to go and see Mr. Kurdy over the tumours growing in my foot. I have been getting a lot of discomfort when I am walking. Mr. Spilsbury informed me that he was leaving too, I was not very happy about this news, I had built up a lot of trust with him and now I have got to start all over again.

25th February 2002:
Time to see Mr. Kurdy, he is not sure what to do about the tumours in my foot.

26th February 2002:
I had an accident on the school bus today, the driver moved off before I had sat down and I fell back and hurt my arm and back. I had to go to A/E department for x-rays, the doctor was a little worried about my back, but after more x-rays decided everything would be ok.

26th February/02nd August 2002:
Not a lot happening really, I was fitted for a new body brace, because I am growing too fast, and I am being referred to a plastic Surgeon so they can have a look at my foot. I am ok really and keeping well, my brother looks after me well; I would be lost without him.

November 2002:
My brother has won a big award for the way in which he helps me and for the safety books he has written plus other work he does. The award is called The Young Citizen Of The Year; it is awarded by the Greater Manchester Police and was nominated by Miss Lloyd, our head teacher. We were both on Granada Reports and we went to an award ceremony up in Manchester Chris was made the young citizen of the year for Trafford by the Greater Manchester Police.

1st May 2003: Result time:
Went back to the hospital today (Wythenshawe) to find out the results of a scan I had done on my neck about 5 weeks ago.

Have my height checked and then my weight (yes! I am taller than my mum). Then I am off to see Pam (the play leader) Pam knows me very well, I have been going to the hospital since I was 11 weeks old, Pam as watched me grow up really, anyway we have a chat and I decide to do a painting. Just as I get into what I was doing the doctor calls me in.

Bad news:
The doctor had some bad news for me. Unfortunately the scan that I had done on my neck sawn that I have a number of tumours in my neck, he is unsure if this is what is causing my headaches. He wants me to see a neurosurgeon for a second opinion. Sit back and wait.

4th June 2003:
Mum and dad took me to the teddy factory in the Trafford centre today; they bought me a new teddy (a dog) to bring me luck. He is really nice (see pic’ below) and I bought one too. The one mum and dad bought me is Scan and the one I bought is called Stella. It was really cool, I helped stuff them both then I put a little red heart in them while making a wish (I cannot tell you my wish just yet).

July 2003:
I went for a scan on my spine at Pendlebury, there was a really bad accident on the motorway so we were very late for my appointment (the doctors understood and had heard about the accident). The scan took about 30 minutes, mum came in with me and so did my two new teddies.

The scan is away of taking pictures of inside my body without using x-rays. They use a special magnet that gives doctors pictures in a more details.

Any preparation needed for the scan?
I had to take anything metallic off and mum had to remove her jewellery (that took about 20 min’), only joking. You also have to remove clothes with zips on.

What happened to me?
I had to lie inside a scanner (it’s like a round drum) and keep very still and I do mean still while the pictures are being taken. The scanner makes a loud “knocking” sound mum wore some ear protection; I tried to listen Robbie Williams C.D 2 but it was difficult to hear.

What happens next?
Scan over, the doctor came in to see me but could not tell me the results he said they have to be sent to my consultant first.

Holiday time: July 2003:
I am going on holiday and will get my results when I get back.

August 2003:
Back home, I had a really nice holiday, I really wanted to swim dolphins but I was not very well so I did not get my wish to swim with dolphins and the Baggies handlers at the airport broke my wheelchair. A lady called Nancy Pool who worked at the airport was really nice and very helpful. We spent two days of our holiday trying to get my chair mended.

Wish:
I really hope I get the chance to swim with dolphins one day, they are lovely animals and so clever too.

Result time August 2003:
Bad news. The doctor looks at my scan and tells me the main tumour as started to grow and this is the reason I am getting so much pain. He turns to my x-ray, the bend in the spine has worsened too, only by 9 degrees

but he was not happy by the results. He goes and gets the other doctor to come and have a chat with me. He was concerned by the fact that the tumour as started to grow and the fact that my back as started to worsen. The doctor asked me if I was happy with the way my back was looking and then said he would operate on my spine if I wanted him too. I told him I needed time to think about it, I was not expecting the decision to be mine and I am not sure if I want to be the one to make decision really.

The doctor arranged for me to have this special scan done before I went home and I have got to have it done again in 6 months. In the meantime I have got to see a neurosurgeon over the tumour, which has started to grow.

August 2003:
I am back at Wythenshawe hospital to see the doctor over the tumours in my neck. I wont go in to everything that was said but basically, I have got to see a plastic surgeon over having some of the tumours removed from my neck.

Back home:
After going shopping with my gran, the phone rings and it is the doctor-asking mum to bring me back to the hospital that afternoon. They wanted to take some photos of my neck for the plastic surgeon.

29th October 2003:
I had to go and see the plastic surgeon today over the tumours in my neck, foot and the one on my chin. He said that if he tried to remove the tumour from my chin it would leave a nasty scar and that it may be better left alone at the moment. Unfortunately there are too many tumours in my neck to try and remove any of them, I have about 8+ on each side, they are not too big but you can see them when I turn my head to the side. I am going back to see the doctor after Christmas and if any of them have grown he may have to rethink and operate on them.

5th November 2003:
I went to see the neurosurgeon (Mr Thorn) today; he was really nice and took the time to explain my scan results to me. Mr Thorn pinned my scan picture up to a light so that he could show them to me and point out where the tumours were.
Mr Thorn wants me to have a special spine scan done in, which will give him a more detailed picture of my spine (I will let you know what it is like when the time comes). He also wants to discuss my case with a Professor before any decisions are made about removing the tumours from my spine. There are too many tumours on my spine to try and remove them all so he wants to make sure that he removes the correct ones and needs to discuss this with the Professor.

Date for scan on my spine:
I have now got the date for my scan, I go on the 15th December 03. I have been told I will need a needle this time so mum is going to put the magic cream on the back of my hand first so that it will not hurt. I will let you all know how my scan goes after I have had it.

3rd December 2003:
I received a letter from the hospital this morning I have got to go and see a Dr Liberman in the chronic pain clinic on the 29th December 03. I have been told that he is a really cool guy; I will let you know how it goes after this date.

In the meantime I hope you have a fantastic Christmas and all the very best for the New Year.

29th December 2003:
I went to see Dr Liberman, he is a chronic pain specialist and what a cool guy. He was really nice we had a long chat and he gave me a good checking over. Dr Liberman decided to put me on a T.E.N.s Machine, which I have to wear under my brace and 2 lots of cream, which I have to have rubbed into my side and onto my foot. A T.E.N’s machine is a Transcoutaneous Electrical Nerve Stimulation (T, E, N, S) drug free method of controlling pain. It uses tiny electrical impulses sent through the skin to the nerves to modify my pain perception. I think I am coping very well with it, although it is a little uncomfortable under the brace.

My back feels a lot worse now:
I have been getting a lot more pain in my back and it feels a so it has gone worse, I have got to go back to Pendlebury hospital on the 30th January. Should find out my scan results too. Unfortunately I don’t feel very well with it at the moment.

30th January 2004:
I have now received the results of my scan and unfortunately the spine has worsened yet again and one of the tumours has started to grow. Doctors think it is time for my operation (I am really scared), the neurosurgeon and the orthopedic doctors are going to have a meeting over what happens next. In the mean time I have got to use my T.E.N ‘s machine to help with the pain. The doctor doesn’t think the brace is doing me any good now, but I have worn it 23 hours a day for over five years and my back really aches when I don’t have it on.

I'm very upset at the moment:
I am upset at the moment, my gran was taken into hospital on an 999 emergency, gran phoned us very upset saying she was hemorrhaging, when we got there my gran was in a mess, so we called for an ambulance who came within minutes. Gran was in hospital for 2 weeks and was diagnosed with lung cancer (we were all very upset by the news). Gran was only home 2 days when she was rushed back in again and again gran was in hospital for 2 weeks. My gran came home feeling not very well and with a lot to think about, I had to think how could I help my gran with this dreadful news, she’s my gran and I love her so much. I went to see gran everyday while she was in hospital and sometimes twice a day. My grans just been back in hospital after having half her left lung removed (a big op’ for a lady of 76), gran was on the H.D.U. for week and very poorly. I kept telling her I loved her and wanted her to getter better quick and that I needed her to be there for me when I have my op’. My gran is now home, still feeling a bit poorly but she is with me and I know my gran will be there for me when I have my op’, because she loves me as much as I love her.

1st April 2004:
Well, just received a call from Pendlebury children’s hospital doctors still working out how to go about my op’ will phone again next week.

16th April 2004:
For the past few months I have just been in contact with my doctors over the phone while it was being decided what happens next.

18th August 2004:
Went to see Mr Thorn today over the tumours on my spine, unfortunately the news is not good, he had a look at my last lot of scans again and also got a second opinion, he thinks it is going to be too dangerous to touch any of the tumours. There are too many tumours in around the spine that he could not possibly remove them all. He did say he wanted to be present at the op’ on my spine and if at that time things look different he will try and remove some. We will just have to see.

10th September 2004:
Back to Pendlebury to see Mr Oxborrow he talks to me over what Mr Thorn had said to him and then sends me off for an x-ray, when I go back in the room Mr Oxborrow tells me my spine has worsened yet again and that he thinks its going to continue to worsen. I have been in a lot of pain and finding it difficult to do some things. Mr Oxborrow tells me he will need to operate before Christmas and that the next time he see’s me will be on my pre op’ check. ‘, I’m not really frightened by the operation, well, maybe I am just a little bit (at least I’ll get some time off school), not really, I’m told I’ll have a home tutor and my school has been really good to me.

I’m going to have my op’ done down the side of my body so no one can see the scar. I will try and keep a day-to-day diary of how things go during my stay in hospital.

13th September 2004:
I went to see Dr Brains at Christie Hospital today over the tumours in my foot and the one growing on my chin. Dr Brains was really nice and she said it would be best if they removed the tumours and she gave me the date there and then (19th October ’04). I am going to be awake when they do this op’ too. Can’t say I’m looking forward to it. Will let you know how it goes.

Thank you:
I would like to say a big thank you to everyone who’s contacted me after reading my story on the web. I am glad I can be of help to you, but you are all helping me too and it’s lovely to hear from you. People like: Martin, Jan, Jack, Matt and Rach, Jonny and Tracey (with my little mate Reuben), Nigel, David, Rashid, Alex, Adrianna, Julie, Ben the list goes on, your all great.

19th October 2004:
Well, I had the op’ on my foot, ankle and chin today at Christie Hospital. My tumours were removed under a local anesthesia, this means that the areas surrounding the tumours were made numb (anaesthetized) so that I did not feel any pain during the surgery and I remained awake too. I was able to eat and drink as normal before surgery. My surgeon tested the area to make sure that skin was numb before starting the surgery. All I could feel was a little pressure, pulling and pushing but no sharp needle type pain. My surgeon told me to tell her if I felt any pain during surgery to tell her and she would give me some more local anesthetic.

It takes about 6 hours for the numb feeling to go away so I had to be very careful until the normal feeling returned. I had 8 stitches in my foot, 4 in my ankle and 3 put in my chin. I have got to have the ones in my chin removed in 7 days and the ones in my foot and ankle in 14 days. When When I got home I had a lie down for a while then my brother took me out to buy me a get well present (2 DVD’s), told you I have a great brother.

I have had some pain so my mum gave me some paracetamol. Hopefully the scars will not be so noticeable in 4 to 6 months time. I am not in school for the rest of the week and next week I am on half term, hopefully by then the swelling will have gone down and I will be able to put my shoes on.

Time for stitches to come out:
Well, unfortunately when the nurse went to change the dressing on my foot she noticed that it was infected, clean dressing was put on and I go back in a few days to have the stitches out. The stitches in my chin came out ok and I’m left with a small scar. Back for stitches out of foot and ankle and dressing change, still looking no better, put on antibiotics going back every other day for the nurse to look at it. I’m now on my third lot of antibiotics and scar has still not closed, the nurse tells me it’s going to take a long time to heal.

1st December 2004:
Went to see Mr Thorn at Pendlebury Children’s Hospital today. He said he wanted to explain what was happening and what he had been doing over the past few weeks.

He told me that he had recently had many meetings with other doctors to discuss the results of my last lot of scans and that I had one large tumour in my spine and many smaller ones and that there were many abnormalities to the spine. He explained that if they tried to remove any of the tumours that it could cause paralysis (the risk of this was high).

The operation on my spine should not be long now, Mr Thorn was very apologetic, saying it was his fault that the operation had been held up. But he wanted to make sure he was doing the right thing by getting a second opinion. Have a great Christmas and all the very best for the New Year.

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

Take care

Love Kirsty x Please click to read more of my story from 2006

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