Kirsty Living with Neurofibromatosis (NF1) and scoliosis
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 asked to bring me back to the hospital the next day.
I remember mum was upset by this news, I did not know what was wrong, I felt fine.
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, I took? The Smurfs Christmas Hits, the doctors was laughing at it. Mum was aloud to come in the scan room 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.
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.
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.
Back at the hospital for my scan, same routine as last time. Only this time I took my NOW 47 CD with me.
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.
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 When you 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.
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.
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.
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.
Click here for help and advice on preparing to wear a Boston brace.
Am I in pain?
“Yes” Sometimes 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.
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. Doctor not sure what is going on, and wants a second opinion.
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 Mr. 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.
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 my new in the New Year.
Teddy 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.
January 2002 and the year ahead:
My year started by me having to have a bone scan, 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.
I needed to have a scan on my spine, which was to see if any of the tumours had grown from last my previous scan. The doctor said that I needed a new body brace, so off to see Mike for my new brace.
I had been getting a lot of headaches and mentioned them to my doctor who arranged for me to have a scan. When I went back for the results of the scan 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.
Many hospital visits and test throughout the year, some good and some not so good.
Going into 2003:
After having a bad few months 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 and I bought one too. The one mum and dad bought me is called 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).
I went for a scan on my spine at Pendlebury,
The scan is a way 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 minutes), 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.
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.
I am back at Wythenshawe hospital to see the doctor over the tumours in my neck. I have got to see a plastic surgeon over having some of the tumours removed from my neck.
We had only been home an hour when the phone rings, it was 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.
Today was one of the best days in my life. Why?. Well, I thought I was going on one of my many trips to the hospital this morning and that mum wanted to pop a competition entry off at Granada Studios on the way. Mum sneakily asked me if I wanted to go in with her to bring her luck with the competition(mum knew I would say “Yes”).
The day begun when we got out of the car and dad said he was just going to park up while he waited for us. When we walked into the building this lady walked up to mum and shook hands and then turned to me and said, “you must be Kirsty, I am Sian Lewis from the Women’s Own Magazine, pleased to meet you”. I still did not know what was going on, I kept asking mum what was going on but she would not tell me, then, in walked a camera crew who introduced themselves. I am Caroline Doherty and we are from GMTV, I was told that I was going to spend the day on the Coronation St’ set with Julie Hesmondhalgh (Haley) and that my brother Chris had wrote this lovely letter to the Women’s Own Magazine to nominate me for the Child of Courage award. I had a fantastic day with Julie Hesmondhalgh, Sian Lewis (from Woman’s Owen) and the rest of the crew. It was raining but that did not spoil my day. I pulled a pint in the Rovers Return, great fun, walked down the street, met some of the cast members, saw Roy’s café, Haley’s and Roy’s house, the corner shop and lots more. It was truly a fantastic day.
My story has just appeared in the Women’s Own Magazine (3rd November 2003) covering my day on Coronation St’.
A very big thank you goes to Sian Lewis, Julie Hesmondhalgh, Caroline Doherty, my brother and everyone at the Women’s Owen for making my dream come true “Thank You” for such a wonderful day.
I had to go and see the plastic surgeon 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 will see the doctor after Christmas and if any of them have grown he may have to rethink and operate on them.
GMP Young Citizen of the Year Award:
I have just won the title of Young Citizen of the Year for Trafford run by the Greater Manchester Police. I was nominated by my head teacher Miss Lloyd for how well I cope with my illness and for the charity work I do. I will now represent Trafford for the next twelve months and for my first job I am going to the Trafford Family Police carol service where I have been asked to say a few words about the charity Wish Upon A Star.
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. 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 my scan on the 15th December 2003. 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.
1st December 2003:
My first roll as the young citizen for Trafford was to attend the police Carole service and say a few words about why Wish Upon A Star is so dear to me and what I have done to raise money for this charity. At the end of my speech there was a collection for my chosen charity, which raised over £236,00.
I went to see Dr. Lieberman, he is a chronic pain specialist and what a cool guy. He was really nice and wore a really jazzy tie, I will have to buy him a new tie for the next time I see him. We had a long chat and he gave me a good checking over. Dr. Lieberman 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.
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 orthopaedic 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:
My Ronnie gran was taken into hospital on an 999 emergency, gran phoned us very upset saying she was haemorrhaging, when we got to my gran she was in a mess, we called for an ambulance which 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. My grans just been back in hospital after having half her left lung removed (a big operation for a lady of 76), gran was on the H.D.U. for a week and very poorly.
Went to see Mr. Thorn over the tumours on my spine, unfortunately the news was 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.
Back 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 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 had the operation 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) I did not feel any pain during the surgery and I remained awake. 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 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.
Time for stitches to come out:
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.
Went to see Mr. Thorn at Pendlebury Children’s Hospital. 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 on 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.
I attend Pendlebury Children’s Hospital for my Pre-op’ surgery.
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.
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 and a nerve test.
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.
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.
Time for me to donate 1 unit of blood, I’m off to have a thumb prick done first, I remember this from last time. 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. The nurse checked my blood pressure and temperature and completed some necessary paperwork.
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, Then the needle used to collect the blood was inserted, this one really, really hurt they went straight through a vein. The blood is collected in a donor bag and it took about 30 minutes. 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.
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, 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 with me as she stayed with me through the whole night), I had 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.
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 break 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 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 ahead, 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.
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 operation. 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. 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 an 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 screws 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’). I was not looking or feeling my best 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.
Nicky & Me
Danny & Me
Ian, Me & Julie
Back on the ward:
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. 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.
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. Claire 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.
Mr. Oxborrow 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 uses 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.
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 dietitian 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.
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?
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, 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. 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. 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.
10th June 2005:
To day I am off to the Gentlemen’s Night Out Charity Committee Annual Presentation, which is being held at the Hilton Metropole Hotel Birmingham. My self and some other children have been asked to go along with the Wish Team to pick up a cheque, which the committee have kindly donated to When You Wish Upon A Star. We all had a great day with lots of surprises, which I will tell you more about later. It was a long day and I was very tired with only getting out of hospital yesterday after three long months but I would not of missed it for the world.
17th June 2005:
To day I am off to Blackpool. The Wish team have asked me to take part in a promotional video for them, which is being filmed in Blackpool, we went to the Sea World, Blackpool Zoo, for a meal, and played on the beach. You never know when you are flying away on your holidays or at a function you may just see the video we made.
29th June 2005:
Things are going ok I am still back and to the hospital, I have started to put some weight on even thou I am still in a lot of pain. My Dietatan 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.
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 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.
I was getting side effects from Tramadol:
Unfortunately Tramadol caused me some side effects, which was dizziness, headache, drowsiness, blurred vision, my sickness was getting worse, I was advised to stop taking it. Not everyone gets side effects from Tramadol, lots of people get the relief from pain from them.
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.
11th November 2005:
Today I had the second part of my Math’s GCSE paper, no more exams until the 24th November 2005 when I will take my Science papers.
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. 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 exercises 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 roller coaster, 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.
5th December 2005:
Today I found out that I was in the final eight to be named the “Pride of Manchester”. The winner will receive £3000.00 for charity, which is fantastic.
12th December 2005:
I went to Lapland with my brother to see the real Santa in Rovanie, Finland. We had to be at the airport for 5am. The flight was nearly three hours long but the time passed very quickly as we had breakfast on the plane and lots of fun with the celebrities who joined us on the day. When we arrived we were transferred to the Enchanted Forest where giant bonfires burnt, we rode on skidoos, snowmobiles and had a Husky ride and met Rudolph. The Finnish people were lovely and very friendly. Later we all sat in a circle in the forest and submit to an Arctic Circle initiation ceremony. This means being flicked round the face with the tail of a reindeer and drinking hot chocolate, all great fun. Finland only has a couple of hours day light at this time of year and it was already going dusk when we landed. After lunch each child met Santa, this was really emotional as you watched each child going to receive a gift from Santa, we later visited Santa’s Village and Santa’s Post Office, where his small helpers stamp all the children’s letters from all the world and despite not being very well and having to see the doctor we had a great time. The trip was organised by the when you wish upon a star team and over 90 children and a parent were invited, many television stars came along on the trip too. When I got home my legs were really swollen, my mum elevated them up to try and reduce the swelling.
14th December 2005:
I went for my physio’ today 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.
12th January 2006:
Today is the results of who will be named the Pride of Manchester” after the public voted for who the winner would be.
The afternoon started by everyone meeting at the M.E.N where we all got to know one another a little better, drinks and food were laid on for everyone to enjoy. After dinner we all went into the M.E.N boardroom where Neville Richardson of the Britannnia Building Society gave a sort speech about there involvement with the Pride of Manchester after, which Maria McGeoghan, deputy editor of the M.E.N gave a sort speech about each contestant before announcing the three winners in reverse order. I could not believe it when my name was called as the winner, I was shaking and very much in shock everyone in the room were winners and they had all done something remarkable, it was great having the opportunity to meet so many lovely people. I was really pleased to have won so that I could give the £3000,00 prize over to the When You Wish Upon A Star team.
Back at Sheffield Children’s Hospita. We chatted about how the relaxation exercises were going. 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.
14th January 2006:
I had a surprise visit from my good friends Julie and Martha today, it was great seeing them both and Martha was just so much fun.
15th January 2006:
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 went to see Mr. Neil Oxborrow to day over the pain in my back, we chatted for a while and I was sent for a full x-ray of the spine, Mr. Oxborrow was happy with the x-ray but a little concerned over some other issues. He sent me to have a blood test to make sure there is no infection in my spine. 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.
I was at Sheffield Children’s Hospital today seeing Sue, 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, 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.
Time for my M.R.I Scan:
I went for my Brain and full Spine MRI Scan. An MRI is a way of taking pictures of the inside of the body without using x-ray and gives the picture in more detail. I had to lie really still while the pictures were be taken, my mum came in with me. The scanner made a really loud “knocking” sound while it was taking the pictures but I had some headphones on listening to my music so that helped. The scan took about 50 min’s because of me having a brain (“Yes” I have got one, or so I’m told) and a full spine scan done. The results will be sent to Mr. Oxborrow and he will phone me next week with the results.
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. I have been told that I have a perforated eardrum.
I have had news about the spinal mattress I should have one very soon as it was going to be ordered today.
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 too 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.
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.
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. I have got to go back to hospital on Wednesday 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.
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.
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
I am attending the hospital every day 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.
12th May 2006:
I had to see my E.N.T doctor, 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 ear-drops 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 any time.
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.
19th May 2006:
I went for the fitting for my new back brace, 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.
Most children with scoliosis have mild curves — less than 20 degrees and probably won’t need a brace or surgery. Periodic check-ups are needed; to be sure the curve doesn’t progress. Children who are still growing need check-ups 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.
9th June 2006:
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.
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.
16th June 2006:
Today was my school Prom and I had a brilliant time. The afternoon started by me having my hair and make-up done by Gillian (Gillian does the make-up for the Corrie’ stars). I decided I wanted to be different from the norm’ and go to my Prom in a open army Jeep so our friend Lee took me in his Jeep, which is from the 1940’s, everyone was waving as we went by.
23rd June 2006:
I received my new back brace 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 travelling 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.
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.
18th July 2006: Back Home:
Our trip to Florida started by a very pleasant flight our pilot was Mark Guest who I got to meet when we arrived at Orlando Airport.
Swimming with the Dolphins in Florida was an ultimate dream of mine and it came true after the when you wish upon a star team granted my wish. The experience was amazing and the rest of my family enjoyed it too! This was a life changing experience that my family and I will never forget. To swim alongside these magical creatures and to receive a kiss from Roxy (our Dolphin) was better than all the medicine.
We were told that the dolphins were free to swim away from us anytime they wanted to and weren’t forced to do anything they didn’t want to do. Each of us got to kiss Roxy and our photos were taken doing so. We also got to rub the dolphin down, we were asked to hold our hands out with palm up and the dolphin swam right up to us, I sent the dolphin out to the middle of the water, and also got splashed by the dolphin as she swam past waving her fin! We then swam out to the middle of the lagoon, I went with my brother and mum and dad went next. Then each of us in turn held onto the dolphin while she swam back to the shore, which was a great experience. After our 30 minutes swim with the dolphins.
We all got a hug of Roxy, feed her fish and tickled her belly while she lade on her back. Sadly our 30 minutes in the water were soon up and we all waved goodbye to Roxy, who then lay on her back and waved back, splashing us all one last time.
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.
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.
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.
Went to Pendlebury Children’s Hospital 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.
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.
I received my results this week, my family say I did really well and are really proud of me. You can see my marks if you go on my press cutting link. I took 15 and managed to gain 9 at A-C grade and my other 6 were still a pass but below a C. I am enrolling on a Performing Arts course at college, which will take me three years to complete. So you never know I may make my dream and become an actor on Corrie’ one day.
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.
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.
I have been going to see Stuart (one of the E.N.T Dr’s) every week since my last update and after having ear swabs done things are still no better with regards the ear infection so Stuart wants me to see this other doctor who I see next week (Tuesday). My ears are really bad at the moment so I’m not sure what will happen.
Marc my physio’ measured me for my foot brace today and that should be with me in the next week. I am not sure what it is like yet only that part of it will go under my foot and in my shoe and the other part will go up my leg with Velcro straps around the leg.
Drop foot 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.
27th September 2006:
I 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).
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.
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 minutes.
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. 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.
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 bones.
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 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 in 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.
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.
My VIP Trip to Asda with Coleen Mcloughin:
I was nominated to open the Asda Store in Altrincham by a very nice gentleman called Derek Hollows, I did not know anything about this until I received a call telling me that I had been chosen. I was told I would be treated like V.I.P and picked up in a Limo’ and that Coleen and I would open the Asda store, well, when I arrived at the Asda store there were so many people outside and TV cameras that I really did feel like a V.I.P. Everyone was so nice after opening the Asda Store with Coleen we both went shopping in the store and Coleen gave me lots of shopping tips, she was really cool and very friendly. I was interviewed for the TV News and later we went for a hot drink where Coleen and I chatted about my fund raising. My interview was on the 6pm TV News. I came away with lots of lovely clothes and items for my bedroom, over £250.00’s worth of stuff.
I am off to London for a few days, as I had won the Well Child award for best brave child age 16 years and over and I will be in the Best magazine the week beginning 28th November ’06. I was presented with my award by Peter Schmeichel the greatest Goalkeeper in the history of Manchester United. I also met Dick and Dom
I am busy getting ready for my Charity Ball on the 18th November ’06, it’s been really hard work and I could not of made this event possible without the help of my friends Keith and Pat they have been brill’ and very supportive after they read my story in the Manchester Evening News. I hope to raise £10,000,00 on night. Julie Hesmondhalgh (Haley from Corrie’), Ian Kershaw actor/writer, Colin Bell (Manchester City Legend), Tony Martin (The Crooner) and Mr Bernard Manning will all be at my event on the night.
22nd November 2006:
I would like to say a big thank you to everyone for their participation in last Saturday’s fantastic event and everyone’s amazing generosity, we managed to raise a staggering £24,801.63p and although I was extremely tired for a few days after. I am really pleased with the amount we managed to raise. Julie and Kersh worked really hard on the auction, Keith, Pat, Alex and the team from the Copy shop worked really hard. I could never of done this without their help. My picture went at auction for £2.100.00 and I was asked to do a second one, which went for £2000. bringing in £4.100.00 towards my target.
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.
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. I have got to have a colonoscopy due to having had some bleeding.
What is a colonoscopy?
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). The colonoscopy contains fibre optic channels which allows light to shine down so the doctor can see inside your colon.
My doctor advised that I have this test due to the symptoms I was getting such as bleeding from my bottom, pains in the lower abdomen. My colon needs to be empty so that the doctor can get a clear view. I have to take a special diet for a few days before the test and I have been given some laxatives to take the day before the test. They are going to give me a sedative with being so young.
8th December 2006:
I have been invited to London to meet Ben Shepard by Chloe and spend the morning watch him present GMTV and Entertainment Today. Mum and me had a brill’ time and Ben was just as nice as I expected him to be. I even got an hug and kiss. I also met some other celebrities, Jason Donavan, Andy Abraham, Michael Underwood and lots of other GMTV presenters.
14th December 2006:
Today I handed over a cheque for £24,801,63p to Ruth from When You Wish Upon A Star with the help of Keith and Pat from the Copy Shop. This will be on Channel M on Monday 18th December 2006.
January 2007: Lung Function Test:
having Lung function tests, which are being done to help determine the cause of my shortness of breath.
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.
Sheffield Children’s Hospital.
I went to Sheffield Children’s hospital 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.
St Mary’s Hospital:
I saw both Dr. Sue Huson and Rosemary Abbot, Dr. Huson 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.
21st January 2007:
I received a letter over the weekend, which said I had been nominated for the Cheshire Woman of The Year Award 2007. I have been invited to lunch on the 21st March at 12.00 noon. The winner will be presented with a trophy and a cheque for £1000.00 to be donated to the charity of her choice. I don’t know who nominated me and they said they cannot tell me, so this came as a big surprise. All I’m told is that women from all walks of life are nominated for personal courage, service to their community or outstanding professional achievement.
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.
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 theatre 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 theatre 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).
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.
Pendlebury Children’s Hospital:
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 then 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.
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.
2nd March 2007:
I am going to have a documentary made about me, which will be called The Day in The Life of Kay, filming starts next week and will be done over two days. I am really looking forward to doing it, they are going to film me at college, hospital, at home and with my mates. Not sure when it will be on TV yet.
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. When dad 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.
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.
26th March 2007:
After the hospital on Friday I went to see the filming of Britain’s Got Talent it was really good, I got to see Ant and Dec, Simon Cowell, Piers Morgan and Amanda Holden. The new concept for this show, required each of the three judges to light an X’ if they wanted the act to get off stage. If the act managed to stay and do all there act they got to go to the next stage. it was great fun to watch.
The documentary I took part in is on sky, the community channel on the 21st May’07 but I don’t have a time slot yet. It is only going to be on TV for about 5 min’s but longer on the internet. I will let you know when I have more news.
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.
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, Mr. Thorne, Dr. Barber, Dr. Brennan and Dr. Huson), Dr. Brennan is going to coordinate this.
10th April 2007:
Where do I begin to tell you what a great Birthday I had? My morning started with me waking up at my Ronnie grans due to the accident at home I still cannot sleep at home. When I got home and after opening all my lovely gifts from family and friends, Mum mentioned that we were going out and that I needed to be ready for 5.30pm as we were going for a meal before going to watch a show at the Lowry called ECLIPS, a circus musical, which Julie, Kersh and Martha had treated mum and me to for my Birthday. When 5.30pm came dad asked me to get in the car so that we could get going and as we went round the corner on our estate dad stopped the car and asked me to get out, I could not believe my eyes when I saw Paddy, as a Birthday treat Paddy and Paul had arranged to pick me up in there Limo’ Chrysler 300 C (Hemi/ Bentley) limousine…
Mum and I arrived at The Deansgate (where we were having our meal) and we were met outside by Colin (Paul’s brother) who escorted us to our seats. Paddy then took us on to the Lowry to watch Eclipse; we had the best seats in the house and the show was amazing. Eclipse is a journey of the seasons through the elements of earth, wind, fire and water. It had international cast of talented artistes, telling a dramatic fantasy tale ballet, mime, song, dance, aerialists, juggling, rhythmic gymnasts, acrobats. I loved the playful jugglers. You’ve seen nothing until you’ve seen Eclipse! The UK’s first and only circus musical.
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 had 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.
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.
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 me 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 bruises and me feeling really dizzy and sick.
10th May 2007:
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.
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.
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.
17th June 2007:
I have been invited to have lunch with Prince Harry and Prince William on the 30th June ’07 at Wembly.
1st July 2007:
Back from London, mum and I had great time meeting Prince William and Prince Harry. I spoke with Prince William, he asked me what I thought about the Spice Girls getting back together and what were the bands that I liked best, he then spoke about WellChild and wanted to know how I became involved with them, Prince William was taken back when I told him how much money I had raised and wanted to know what I done to raise so money. After chatting with Prince William we went for a meal, after the meal we had a photo call with Prince William and Prince Harry, I sat next to Prince William, then we went into the Royal Box at Wembly to watch some of the concert that was being put on in memory of Diana. I was asked to do an interview for the BBC News, Sky TV and Radio. The day was brilliant and everyone was so kind.
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.
14th August 2007:
Both mum and me went to watch the The Antony Cotton show being filmed last Friday, it was really enjoyable, the show went out on TV last night and both mum and me were featured on it in the audience, mum got stopped going to the shops today to ask if it was her in the audience last night lol..
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.
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.
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.
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 got PET Scan on Friday.
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:
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.
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.
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.
Mum received a call from my Nf doctor on the evening of the 28th December 2007 to say that she had received a call from the doctor who did the P.E.T scan and that he felt it would be a good idea if I had the P.E.T scan done again as he thinks it was a cold day on the day that I had the scan and may not of given a correct reading and he is going to use my last P.E.T scan as a base line. My Nf doctor wants to see me in February to have a chat over how things are going and to explain the P.E.T scan to me.
22nd January 2008:
I saw my paediatric orthopaedic consultant today who looked at both my knees, he said that both knee caps were loose but one more than the other and that there was a lot of swelling to the back of the knees, he was unsure why and decided it would be better to do an MRI scan of both knees. The hospital phoned yesterday and I have got to go on Friday for the scan.
9th February 2008:
I have had a busy few weeks. Channel M contacted me and asked if they could come and interview me for the Well Child Award and talk about my condition and the charity Ball that I am having. Beverly Walkden came to interview me, she was really nice and great fun to talk too. My camera man was called “Mark” he was really cool too. I was on channel M on Monday 4th February. Beverley and Mark are both coming to my Ball next week, so if you can get Channel M look out for some clips of my Ball on the news.
I was also asked to do a live TV interview for Channel 5 on Thursday 7th February, both mum and I went down to London to do the interview for the Channel 5 News.
I am also in the running for the Champion Children’s Award with the News of the World.
14th February 2008:
Getting very excited now, my charity Ball is on Saturday, Keith, Pat and Alex from the Copy Shop in Cheadle have helped me so much to make this Ball a success, I can’t begin to find the words to thank them all.
I have been asked to do a live TV interview on Monday morning 18th February 2008 for channel M, where I will talk about how my Ball went. I will be on the breakfast show.
The Manchester Evening News will be covering the story too and coming along on the night to take pictures.
18th February 2008:
My charity Ball went really well, I had over 200 guest including Julie (Haley from Corrie’), Ian Kershaw (actor/writer), the boys from Eton Road, Rowetta from X- factor, The Mersey Beetles and Vince Miller. Guest travelled from as far away as Holland, Scotland and London. some of my doctor’s and nurse’s also attended. Lots of money was raised.
14th March 2008:
My Valentine Ball raised a whopping £23,000.00 and I presented the cheque to Carole from the wish team on Thursday 13th March along with Eton Road (David, Marcus, Danny and James), Keith and Pat Oldfield who were my sponsors and just amazing people.
My back and legs have been really painful and I had to wear my back brace for college to try and help with the pain.
I am going into hospital on the 9th April for an operation on my foot, I have got a tumour that is deep into the foot and is giving me some pain when I try to put my shoes on.
There is a small story about me in the Chat Magazine this week, which tells you a little about me and about my fund raising.
I saw my NF doctor (Dr. Sue Huson) last week, Dr. Huson explained that I will be having my PET scan in May as they want to make sure the tumours on my spine and in my pelvis are not growing too fast, if it turns out they are growing I will have to consider having them removed.
1st April 2008:
I was back at Pendlebury Children’s Hospital this morning to see Mr. Henry for the results of the scan I had on my knees in February, Mr. Henry gave me the report from the scan, which said:
Both knees, thighs and proximal calf have been included in the scan. There are innumerable neurofibromata of high signal on fluid sensitive sequences distributed alongside the neurovascular bundle of both thighs extending behind the knees and into the calves. Scattered smaller lesions also seen within the muscles and subcutaneous tissues. The larger lesions measure up to 3 cm with a diameter of around 1.5 cm. There is an interamuscular neurofibroma with a diameter of 1.3 cm in the medial head of the right gastrocnemius within the popliteal fossa. Adjoining cluster of smaller neurofibromata is also seen. Multiple neurofibromata also fill up the left popliteal fossa. There is no popliteal cyst seen communicating with the knee joint. No significant effusion seen within the knee joint. No marrow signal changes are seen either. The internal knee structures including menisci cruciate and collasteral ligaments are grossly normal.
After reading the report and looking at my knees again Mr. Henry told me he would not be able to remove any of the tumours as I may end up worse off. But if the tumours continue to grow the situation will be looked at again and it would be a plastic surgeon that would have to remove the tumours not him.
The report will be sent to Dr. Sue Huson my NF doctor for to look at and decide if anything is needed to be done.
I had an appointment to see Mr. Oxborrow last Friday and after having an X- Ray on my spine Mr. Oxborrow said the spine has now fused together, which is a good thing. I have been getting a lot of pain at the top and bottom of my spine, which I mentioned to
Mr. Oxborrow. The pain does wake me up in the night and tends to get worse throughout the day. Mr. Oxborrow wants me to move over to adult services now that I am 18 years old and to do more physio’ to see if this will help as he thinks it could be muscular pain that I am getting. he wants to see me again in six weeks to see if things have got any better.
he also mentioned that one of the screws may of split at the top of the spine and will look into this in more detail.
I don’t mind moving over to adults as long as I stay with Mr. Oxborrow, I don’t want to be seeing anyone else.
I told Mr. Oxborrow (my spinal doctor) about the book I am writing and he said he would make a contribution to my book by writing a peace for it, which I was really pleased about. I have also spoken to my ambulance drivers who have been taking my mum and me to the hospital every week for the last three years and they would also like to make a comment in my book for me. It’s taken a long time to write but I can soon start looking for a publisher who will publish my book for me.
I am going into hospital for surgery on my foot tomorrow, I should only be in a couple of days thou depending how surgery goes.
11th April 2008:
Just to let you all know I am home from hospital after having two tumours removed, one from my foot and one from my chin.
I had to go on the drip for a few hours as I was being sick, but this is only to be expected after surgery. Everything seems to have gone ok with the surgery and I am not in too much pain now. I go back to dressing clinic next week to have the stitches removed and the dressing changed. I am having my PET scan on the 3rd June at Christies Hospital, having had one of these before I know what to expect.
Manchester Hero Awards:
Someone has nominated me for the Manchester Hero Award, I don’t know who it was, but all I have been told is that a few people have put my name forward for the award. I was in the Manchester Evening News on Wednesday, I was in hospital and one of the doctors came up to me and said “we have a celebrity on the ward” and I asked him who it was? and he said “you”, he had just read about me in the paper lol… I really thought we had a celebrity on the ward too. I was also on the Channel M, TV, News over the award. I was a little embarrassed because I did not know why I had been nominated really. I find out in June if I have won, so I will let you know then.
25th April 2008:
I have just found out that I am also in the final for the Huggable Bear Hero Award, which is run by the bear factory. I find out in May if I am one of the two winners from the UK to win the award and if I do mum and me are off to Washington DC for four days in July, I also win money for my charity and a scholarship for University, which would be brilliant.
7th June 2008:
I have just found out that I am one of the 25 winners of the Manchester Evening News Hero Award, I will be going to a big award ceremony on Thursday next week. Each of the winners will receive a £1,000 reward, which they will be presented with at a special ceremony on June 12. I am going to use my money towards getting my book published so that it can start helping others with NF and Scoliosis.
12th June 2008:
This evening mum and I went to the Manchester Hero Awards, which was sponsored by Barclays and M.E.N as it prepares to open it’s flagship branch on Market St. The awards honoured some exceptional people from across Greater Manchester. The 25 winners came from all walks of life, from have a go hero’s to another young boy who raise’s money for charity. I felt honoured to be part of the celebration. Kym Ryder presented the awards; we each received £1000, 00 and a framed certificate.
17th June 2008:
This was my first visit to see Mr. Neil Oxborrow at Hope Hospital, it felt strange not seeing him at the children’s hospital.
Mr. N Oxborrow was not expecting to see me as it was not really his clinic, he was just filling in for Mr. Williamson.
Mr. Oxborrow was still unsure if the rod had moved at the top of my spine but was not too worried about it, he is going to look at my old x-rays and compare them to see if the rod has moved too much. I have got to continue with my physio’ and try and do more physio’ at home too. I go back and see Mr. Oxborrow in nine months to make sure everything is ok, but he is going to contact me in the next four to six weeks after he’s had time to look over both x-rays. I wanted to get a picture of Mr. Oxborrow for my book, he is also writing a document for my book.
Vicky, My tissue viability Nurse:
Vicky came to see me so she could measure both my legs for some compression hosiery stockings as my ankles keep swelling up.
It was important for Vicky to assess each of my limbs for suitability for compression treatment before application.
Mum went and picked them up from the chemist this afternoon and I found it really difficult to get them on. I am at the hospital for my physio’ tomorrow so I will mention this to my physio’ as he may have some tips on how to get them on more easily.
My weekly pain clinic visit, the treatment that I am trying for my pain is called External Neuromodulation and is used for the relief of chronic pain.
This treatment was developed at the renowned INPUT Pain Unit at St Thomas’ Hospital, London. It targets the nerves responsible for your pain. It changes the behaviour of the nerves so that your pain is reduced. It is normally used for neuropathic or nerve generated pains. These tend to be unpleasant and described by such terms as “burning”, “prickling” and “tingling”.
What happens during treatment?
A sticky electrode and a metal probe was placed on my skin and a very small electrical current directed at the nerves responsible for my pain. Asmall amount of gel was used on the tip of the probe.
The treatment last about five minutes at each area of the pain, after my treatment my pain was reduced but this was only temporary. Some patients have got weeks or months of benefit from this treatment and when their pain did return it was with less intensity. I am having treatment once a week for the next six weeks when things will be reviewed.
13th June 2008:
They say Friday the 13th unlucky for some, well, this was not an unlucky day for me.
Mum said we were going to the Trafford Centre to get my grans teddy from the Build a Bear work shop, when I got there I was busy looking round when the next thing I knew Helen (the manager) came up to me holding a beautiful bunch of flowers and a teddy and told me that I had won the huggable bear hero award for the UK and would be flying out to Washington DC in July to receive my award, which is money for my charity and a scholarship to University, I was total shock and could not believe it. Channel M filmed it all and later interviewed me, which was on TV this evening.
The new pain treatment seems to have helped the pain in my shoulder a little but not the pain in the back. I have got one more treatment to have when things will be reviewed again.
4th July 2008:
I am off to Washington DC on Tuesday morning with my mum.
8th July 2008:
Mum and I are off to Washington, DC this morning for the Huggable Bear Hero Awards so it was up at 5.30am for us both as we have to be at the airport for 7am. Dad arrived home early from his night shift so that he could take us.
I had been told that one of the Build a Bear Associates was going along too and that his name was Chris, he was travelling from the same airport as me so I knew he would be on the same flight, I had been told what he looked like and when I arrived at the airport both mum and I saw this young man stood with an older guy we looked at each other and both said “Chris”. Me being cheeky went up to him in my wheelchair and asked him if he was called Chris to which he replied “Yes” looking at me in amazement, I then said from Build a Bear and he said “Yes”. So I introduced myself and my mum and we stayed together for the rest of the journey. The flight over to New York was really good the food was nice too. But we had a four hour delay with our connecting plane. So we were all very tired after just having a seven hour plane journey. When we eventually boarded the plane in NY it was really small and I got out of my wheelchair to board the plane, mum was told to leave the wheelchair at the side and that they would fold it up and make sure it was put on the plane, unfortunately they had problems trying to fold it and a member of the crew had to get mum to do it. As mum got up she bumped her head on the overhead baggage compartment (shows you how small the plane was), I know shouldn’t of but I went in to the fit of giggles along with half the plane, “Poor mum”. Mum folded the chair and we were on our way finally getting to our hotel at 10.30pm Washington, DC time, so it was like 3.30am for us and we had been up almost 24hours. We were picked up in a limo’ and taken to the hotel where we were met in reception by a very nice lady from Build a Bear, she asked us to order a meal and drink and that she would see us in the morning. When I went up to our room there waiting for me on the table was this basket of goodies from Maxine Clark. We were really tired and managed to get a great night’s sleep, the beds were so comfy.
9th July 2008:
We were up early as we had to be at breakfast for 7am due to the busy day that we had ahead of us. After mum and I had finished breakfast I just had time to head back to our room and get showered before it was time for my photo shoot. I was told I would feel like a star for the day, which I did. I had my hair and make-up done before heading over to the stylist who had a selection of clothing and trainers for me to try on. I chose this really cool multi coloured jacket, a green top, pink trainers and a pair of sweat jeans (the jeans cost over £100.00). A few weeks earlier I had picked and dressed two teddies, one that represented me (I put a blond wig on it, holding an I-pod) and one other teddy just for fun. I was photographed holding one of the teddies. While I was busy doing my photo shoot mum was being interviewed in this other room about my charity work and about me (I hope she said some nice things lol..). After the photo shoot I was told that I could keep all the clothes that I had chosen apart from the jeans as they had only borrowed the jeans for the shoot and they had to give them back, they were really comfy too. Photo shoot and time for me to do a quick interview.
By now it was getting on for 11.30am and almost time for lunch, we were all to meet in the Capital Room C in the hotel as we were having a Lunch N’ Learn as a Group. We had the opportunity to meet and learn from some of the very special partners with whom Build-A-Bear Workshop works.
I also got to meet all the other 2008 Huggable Hero’s, who were: Anna – Colorado, Austin – Arizona, Aymeric – France, Christina – New York, Dallas – Washington, Emma – Nova Scotia, Jack – Oakville, Michala – Kentucky, Rocco – New Jersey, Jasmine – California, there were also two Associate Huggable Heroes who were: Christopher, Warrington and Laura, Wisconsin. There was one other winner Malka – London but Malka was unable to attend the awards. Each one above names have done something good for their community, which is why they have been honoured in this way. After lunch I attended a Leadership Symposium with some of the other Huggable Hero’s, we all participated in a special leadership symposium with a lady called Kathy Cramer. We got into two groups and worked together as a group. The Leadership Symposium lasted about two hours.
By now it was 4.30pm and mum and I were free to relax for two hour. We went for a little walk around Washington DC but not knowing the area we did not want to go to far and both being on crutches we could not go far anyway. We did attempt to find the White House but went the wrong way.
We all had to meet in the hotel reception for 6.15pm as we were going to the Hard Rock Café for tea. By now all the previous five year Huggable Hero Winners had arrived to mark the fifth year of the awards. Lots of hugs were being passed around, which was nice to see. The Hard Rock Café had stained-glass windows and honours the rock-and-roll greatest stars. It was really busy and we waited a while for our food to arrive. We got back to the hotel about 10.30pm and all decided to meet up in the hotel swimming pool where we stayed until midnight, mum and Debbie sat in the hot tub by the pool.
10th July 2008:
Breakfast was not as early this morning so we got a little to lie in until 7am and down for breakfast at 8.00 am. At Breakfast we were joined by Millicent Williams Executive Director of Service DC.
After breakfast all Huggable Heroes from this year and the previous four years departed to do some community service activity. We all got a turn at painting a very special mural at Lackie Elementary. For lunch we all sat in a big group having a picnic lunch. Leaving our mark in Washington, DC felt really good.
We got back on the bus for a special sightseeing tour of the Washington, DC area. We saw the White House, the Lincoln Memorial and Washington Monument and other classic sights. Getting back to our hotel for about 4.00pm, which gave us two hour to relax and get changed before heading off for the Huggable Bear Hero Awards. The awards took place at the Top of the Hill with Chief Executive Maxine Clark and Olympic Gold Medal Gymnast, Dominique Dawes, who served as the evening’s emcee and Michelle Rhee, Chancellor of the DC Public School system who was one of the keynote speakers.
The room was done out beautifully and each table had two teddies on it. The meal was chicken and tasted really yummy. After everyone had finished their meal each one of this year’s Huggable Heroes were called up to receive their award from Maxine Clark. I was first up and while I was going up for the award Dominique Dawes spoken about what I had done to receive the award as she did for each of the heroes. The evening was very interesting and memorable. We got back to the hotel about 11.00pm and after having a chat in the hotel reception we decided we would all meet back down in the hotel pool for one last splash about. We went back to our rooms at about 12.30am.
11th July 2008:
We were up early for breakfast I had a quick chat with some of the new friends that I had made and then went to get some gifts to take back home while my mum went to do the packing. I was given four new teddies, a set of clothes, a book, which Maxine had written and lots of other nice things, mum had a bit of job fitting everything in the case.
We were picked up at 12pm to take us back to the airport in the biggest Limo’ I have ever seen, there was fifteen of us in including our entire luggage and my wheelchair, so that will give you an idea of how big it was.
Chris and his dad, Nigel were on the same flight as us so we stayed together. We got back to Manchester just after 7am Saturday morning.
The last few days have been amazing; everyone involved went out of their way to make it memorable. Both mum and I met and made friends with some pretty amazing people from all over the Globe.
I would like to say a big thank you to the following people:
Maxine Clarke, Kate Zeidman, Samantha Fisher, Harriet Blickenstaff, Jacob Blickenstaff, Jill Saunders, Kristen Hanneke, Jay Beauvais, Jakie Bauer, Teresa Kroll and Nicole Spiegel. I have got a feeling I may have missed one of the guys out and I’m sorry if I have, but you were all wonderful and I hope that mum and I get the pleasure of meeting you all again someday.
Looking forward to seeing the Build a Bear calendar when it comes out later this year.
17th July 2008:
Today was my last lot of treatment for the pain in back and shoulder. I have been getting a lot of pain at the bottom of my back, to the top of my back just above the scar in my shoulder and the treatment is not really helping now. I have got to go back to see Dr. Lieberman in October.
29th July 2008:
This evening my Mum and I were invited to the Didsbury and District Rotary Club meeting where I was presented with the Charles Austin Volcational Service Award. The award is named after the late, long serving and much respected, honourable member of the Rotary Club.
I was nominated for this award by members of the Rotary Club, which made even more special. The evening started with us having a three course meal followed by coffee. Linda made a speech about why I was being given the award (which I have included in my book) and presented me with a Certificate, £200,00 for my charity, a portable DVD player and a bunch of flowers. Linda then passed over to Phil, Phil said a few words and then presented me with another Certificate and a cheque for £100,00 for me to take my family out for a meal.
15th August 2008:
My picture (head and shoulder) is to be transformed into a 1960’s pop art style image. The design called localHeads will use photographic portraits and put them up in lights in a 60s pop-art style, which will then go on display as part of a quarter mile long archway of faces which will take pride of place along Blackpool’s promenade throughout the Illuminations season. It will be part of the lights for the next three years. I am one of six chosen by Granada Reports.
I had to go and see my NF doctor (Dr. S Huson) for my six monthly check-up. Dr. Huson gave me a good all over medical check. I spoke about how my breathing had been getting worse and about the pain in my back and in my knees, Unfortunately Dr. Huson said my foot drop has worsened considerably in the past six months, she is going to contact my GP about all my other problems. But has also decided to send me to see a doctor in London and I may have to see a doctor in the USA due to how things are going.
Dr. Huson said my PET scan was looking good. But that it did show that I have many, many tumours on my internal nerves and that she as never seen anyone like me and that I was a one off (mum always said God broke the mould when he made me lol.. In the meantime I have got to continue with my physio’ and do some extra physio’ on my feet. I have also been getting very breathless and started being sick again so I have been told to make an appointment with my GP.
I am busy trying to decide which University to attend at the moment and what I actually want to study, I am looking at going into radio presenting as I use to have my own radio show when I did voluntary work at Wythenshawe FM and really enjoyed what I did at the time. Plus I will be sat on my bum and it will not interfere with my disability to much.
2nd October 2008:
I am fundraiser of the month on Justgiving.com and the guys at Justgiving’ donated £25 on my Justgiving page for my When You Wish Upon a Star Appeal. You can read what they wrote about me by visiting: Fundraiser of the month, September 2008. Thank you to the guys at justgiving for picking me as their fundraiser of the month and for the £25.00 donation.
27th October 2008:
I was called in to see my GP this morning after having had my blood results back from the full blood count that she requested. As we thought the test confirmed that I am enemic so my doctor put me on Ferrous Sulphate 200mg tablets, Which I have to take twice a day for the next four weeks and then have a full blood count done again before going back to see my GP and she will tell me if I have responded to the treatment.
Mum phoned college this morning to explain why I had not been in today and to let them know that I will be in tomorrow but to take into account that I am more tired than usual and that they may find I am less active and that the ability for me to focus is somewhat reduced at the moment.
I have not got the date for my echo test yet but my GP did mention it this morning when I went to see her, so I think she was going to give the department a call.
10th December 2008:
I attended the Manchester Community Awards this evening with my mum and good friend, Lesley. I was in the final three to be named The Young Citizen of the Year. The finalist were honoured at a glitzy Town Hall ceremony, hosted by the Lord Mayor of Manchester and Gordon Burns off BBC North West Tonight.
The event was made possible by generous sponsorship support from a number of Manchester businesses which provided services to the communities of Manchester and have a commitment to improving the quality of life for residents. A special champagne reception for all the guest attending the glamorous ceremony was hosted by Xerox, in the Lord Mayor’s Parlour. I was shocked when my name was called out as the winner. I received a large glass trophy with my name engraved on it and £300.00. My award was sponsored by Northwards Housing. Martin Joyce, Managing Director of Enterprise Manchester, who sponsored the Pride of Manchester Awards said: “Enterprise Manchester are very proud to award Gloria Barnwell the Pride of Manchester in recognition of her invaluable contribution to Manchester’s communities”. He also referred to the unprecedented decision they made to award an extra “runner up” in the category, adding: “We are also very pleased to make a special commendation to Kirsty Ashton in the Pride of Manchester category, for her remarkable achievements in the face of adversity.” For this I received a further £250.00, a framed certificate and a £500.00 donation to my charity. I would like to say a big “Thank You” to everyone involved in the awards, the night was most enjoyable and well done to all the winner’s and runner ups , it was lovely being in a room full of so many wonderful people. The entertainer for the night was “The Crooner”, if you have been following my blog you will know that Tony, The Crooner attended my first charity Ball, he is such a great guy with a fantastic voice. It was lovely to see him again.
27th November 2008:
I have been nominated for the Manchester Community Award and have just found out that I am in the finals and will be attending a presentation evening on the 10th December when I will find out if I am one of the winners.
17th December 2008:
Yesterday I was given the biggest surprise of my life, I went to college like any normal day, dressed like a scaly, I had this nagging cold, so did not really feel like lessons. Peter (my tutor) asked me to lead the lesson, I was doing my work when Calvin Valentine (Ricky Whittle) entered the room with a camera crew and said “I’m looking for Kirsty Ashton”, I was like eer, eer, “Hi!” He said “do you know why I’m here?” I said “No”, he said “well come over here and give me a cuddle”. He said that I had done so much for other poorly children, that they had decided to do something for me and that he was going to take me to Liverpool to look round the Hollyoaks set and I would meet the cast, I was buzzing. I went in Calvin’s car to Liverpool (some cool car that he’s got I can tell you).
Ricky showed me round the Hollyoaks set, which was being filmed the whole time, he then said I hear you like Andy who plays Rhys, I was like errrm, no comment, I you are all fit lol…
Calvin introduced me to Newt (Nico Mirallergo), then Rhys spoke to me and I was all googly eyed. We had some pictures taken before going for dinner. After dinner I went and watched Calvin do his scene. Calvin then surprised me and told me that I have been given a part in the pub scene with Rhys and Gilly, I was like WOW, I was given my script and asked to learn my lines ect while I was in make-up. I had to flirt with Rhys (not a difficult job for me), Rhys rubbed it in because he knew I liked him, when we went off set the cameraman asked for pictures of us both, Rhys was going in for the kiss and then he fell and the cameraman went we might have one of it looking like your going to kiss lol. Then there like, keep in contact ect’ and hopefully see you back here one day.
I spoke to the director, he said he was impressed and that I was easy to work with ect’ so you never know I could be a regular one day lol… After my scene we ended it off with a bit of me waiting in the pub and then the lovely sexy Calvin came in the pub in his uniform, it was an image to die for, I was like OMG, OMG, I am going to faint, he looked soooo fit, but I love them all, they are all brilliant. Hopefully we will stay mates and stuff and I’ll see them on set again someday. I have heard from Andrew (Rhys), Anthony (Gilly) and Sonny (Josh) since I have been back.
I cannot tell you all what happens you will just have to watch Hollyoaks, I will let you know when it goes out on TV. I really did have the best day of my life and I would like to say a big thank you to everyone involved in making my wish come true (you can see some more pictures from my day on my picture link). To act on Hollyoaks was on my wish list in my book. I can now tick that one off. But I would love to do more acting on Hollyoaks, I loved it so much. I met some of the nicest people, I cannot remember all your names so thank you to everyone. Paul Young, Jay Morris, Ricky, Andrew, Nicole, the camera crew and all on Hollyoaks for giving me a brilliant day.
I have got to attend the pre-operative assessment clinic tomorrow before going on for my physio’ in the hydro’ pool. This assessment is to make sure I am fit for my operation next week. I just hope I don’t have to have any blood test done, the last blood test I had did not go down so well as the nurse had problems trying to find a vain to take the blood.
Things still the same with my back and I have been wearing my back brace to try and help with the pain, my physio’, “Jane”, wants me to see about having a new back brace made so that I can wear it when my back is really bad like it is at the moment.
I have got the date for seeing Mr. Henry (27th January) over the tumours growing on the back of my knees and not being able to wear my knee braces due to the braces rubbing on the tumours. My mum and I ended up spending most the afternoon at the hospital, the nurse who did my pre-operative assessment was really nice and we were chatting about Hollyoaks (she likes it too) and after doing all the different test that she needed to do, she decided that I should go for a chest x-ray and blood test. “Yes”, I had to have a needle, I thought I was going to get away with it this time. But I am never that lucky. She also decided that it would be better if I came in hospital on Monday.
Before going down for my operation I was told I would need a needle, which is no go with me unless they put some magic cream on the area first, one of the nurses said that it had not been prescribed for me and unless they could find a doctor to prescribe it I would have the needle without. My mum said that she would go down to the children’s ward and get some for me, mum had not been gone above 5 minutes when the nurse came back with some magic cream so I texted mum to let her know that I had got some. But that was not the end of my injection’s, I was given an injection to stop the sickness, injection’s to stop my blood from clotting and “Yes” they had problems putting the injection’s in and “Yes” I cried. The next day I told them I did not want the injection to stop my blood clotting as I was able to move about and that I would cope with the sickness by having tablets. I had to stay in hospital a few nights.
My gran was in the ward over the corridor to me and one of the nurses off grans ward brought my gran to see me after my operation, which cheered me up. My gran is still in hospital as she is not very good on her feet at the moment and the doctor wants her walking a little better with her frame before they can let her home.
6th January 2009:
I am still buzzing from my trip to Liverpool and don’t think I’ll believe I have been on the Hollyoak’s set until I have watched it on TV. Not got the date for when it is on yet.
14th February 2009:
My mum’s been in hospital too, she had to have an operation on her toe, they fused one of her toes and had to remove one of the nerves in her toe as it had thickened, my poor mum is now hobbling around with a rod sticking out of her toe for the next six weeks.
I am on Hollyoaks this Friday (20th February) when Andrew Moss and I flirt at the bar. I cannot thank Noel Edmonds enough for arranging for me to go on Hollyoaks and I still can’t believe it.
13th January 2009:
I am on Noel’s HQ on Saturday night the 17th January at 7.30pm, you can watch Noel’s HQ on Sky 1 virgin 121, Sky 106 and HD 170. I am really looking forward to meeting Noel and being on the show. I am also in the Sun Newspaper one day this week and I think the Daily Express on Saturday 17th January.
A lady came and did my make-up this morning before I had some pictures taken for the Daily Mirror newspaper, so I know I’m going to look ok on them lol…
18th January 2009:
Mum got a call to say our car would be with us in 5 minutes. When we arrived at the studio’s our car was met by Paul Young and Jay Morris, People had already started to queue to come in and watch the show and the show was not for another two hours.
I felt like a star as both Paul and Jay kissed me on the cheek and took me inside. You can imagine my surprise when I was shown my own dressing room with my name above the door. The room was huge and had a TV, video, toilet, shower, fridge (which was filled to the top with drinks), Noel was in the next dressing room to mine.
Paul, Jay, Nicole, Ross and lots of other people kept coming in to make sure we were all ok and asking if we wanted anything. I was then taken to make-up, I had to look glam before going on TV.
We were then seated in the Studio ready for the show to start, I began to feel nervous and my hands were shaking. I was first on so I was then taken back stage ready for Noel to call me on. click on the picture of Ricky and me and sit back and enjoy.
After the Noel’s HQ had finished everyone who had been on the show including the stares and crew all went back stage for drinks and food. Neil Fox came chatting to me and congratulated me on raising so much money. I got lots more hugs of Ricky. I could not believe it when Noel said Ricky was here too as you will have seen by my face. Ricky is such a nice guy and gives really nice hugs. I chatted with Keith Chagwin and Noel, mum asked Noel who the Banker was and he said “sorry’ can’t tell you, not even for you” lol. We had a really nice night and everyone was so kind. I had something money just cannot buy, a part in Hollyoaks and I would like to thank Noel Edmonds and Ricky Whittle and everyone involved in making my dream come true.
I have had lots of feedback from people saying how I have inspired them to do something for charity, if everyone did a little something the world would be a much better place.
20th February 2009:
Yesterday mum and me went to London where I did a fashion shoot for the Daily Mirror, my hair and make-up was done by CB (Clair) and I was styled by Oriella Paganuzzi, I had a brilliant time. My pictures were taken by Emma Cattell who made me feel so relaxed when taking my photo.
I went to see Mr. Neil Oxborrow, who is my spinal surgeon at Hope Hospital in Manchester about my back. The operation I had on my spine in 2005 did not go without it problems for Mr Oxborrow as many of you will have read in my earlier blog. But recently the pain in my back has been getting worse and one of my hands has started to feel cold while the other feels warm. Mr Oxborrow said I would need to talk the problems with my hands over with my Neuro’ surgeon, but was concerned about the pain that I am getting in my back. Having put one of my last x-rays up on screen, he was a little concerned about one of the screws to the top of my rods and the fact that my spine is curving above where he went up to with the rods. After having a chat with him it was decided that I go back in the back brace to help with the pain when I am in college and when the pain is really bad. He mentioned doing further surgery to put more rods on spine taking them all the way to the top. He said the surgery comes with risk as I have so many tumours on my spine and that he would have to do surgery from both the back and front of my chest. He wants me to ring him in May and let him know if I want to go ahead with the surgery. If I decide not to go ahead he will discharge me as there is nothing more he can do for me. I really do not know what to do, the pain really kills me at times, but the thought of another big operation also worries me. If I do decide to have the operation I will need to have lots of other test and scans and I would only allow Mr. Oxborrow to do the surgery. Before going home with lot to think about Mr. Oxborrow sent me for a full spinal x-ray so that he could view both x-rays. I had to wear one of those silly gowns that never fit or fashion up at the back, Phil, one of my favourite ambulance drivers had arrived to take me home and seen me in the gown, how embarrassed was I. lol… I knew I would be in for some stick off him. But being a girl I can take it and will give as good as I get lol.
17th March 2009:
I saw Dr. Huson a couple of weeks back, we spoke about the operation that Mr. N Oxborrow asked me to consider having. Dr. Huson was also going to London for a meeting with Dr. Ferner she was also going to have a chat with Dr. Ferner about me and see if she would like to do a video link in clinic. But Dr. Ferner said she would like to see me in person so I will have to go to London at some point to see Dr. Ferner.
I received some notes from Mr. Oxborrow and in it he says that he is a little concerned about the appearance of the top screw and wondered whether that some progression of my NF had caused scalloping around the top pedicle screw. He was going to have my x-rays reviewed at the x-ray meeting.
I have also started being sick again and cannot keep anything down.
17th March 2009:
Today I was in the Daily Mirror, I was given a full centre page spread. The Mirror had arranged for me to do a photo shoot to help me with my modelling and TV work. I was contacted by a number of magazines who also want to cover my story after reading about me in the Mirror.
23rd April 2009:
I have just spent the last four weeks in hospital due to continues sickness. Mum took me to see an out of hour’s doctor who gave me an anti-sickness tablet that melts under the gum but they did not help, so I saw one of the GP’s at my surgery two days later who said I was mildly dehydrated and gave me some Dioralyte and said I would need to come back if things got any worse, I could not manage to keep the Dioralyte down so mum and dad took me back to the out of hour’s doctor two days later, the doctor asked my dad to take me to the A/E department and that he would fax them to say I was on the way.
When the doctor at the hospital saw me I was put on a drip and told I would have to stay in hospital for a few days.
During my four week stay in hospital I had some investigation’s done to try and find the cause of my sickness, the first test they did was an endoscope, this was done by using a narrow flexible, telescopic camera, which I had to swallow and then they passed it down my oesophagus and into my tummy. I kept being sick while they were doing the test and they kept having to vac the sick away. The results showed that I had some inflammation to my duodenum. But they did not think this was the cause of my sickness. The doctor said that he had taken a biopsy (a small sample of tissue) for testing. I had a sore throat for a while after the test.
I also had an ultrasound scan of my tummy this just showed some tumours but they were really small and again they did not think they were the cause of the sickness. I also had a Brain scan, which confirmed I have a brain. But they found nothing to worry about on the scan, which was good news. I also had a MRI scan on my tummy, which showed more tumours than the ultrasound scan did and the doctor hopes to talk with my NF doctor (Dr. S Huson) to see if there is a possibility that one of the tumours are on nerve that is making me sick.
One of the doctors suggested that I am making myself sick, my mum went mad with her and told her to ask the nursing staff who had been sat with me when I had been being really sick and one of the doctors had also been in the room a number of times when I had been vomiting. Mum asked the doctor if they would do a gastric study but she just said what did we hope it would show and my mum said, the answer to why she is being so sick. But she refused, saying she did not see the point in having the test.
My mum continued to ask if they would just do the gastric test and in the end they the doctor agreed to arrange for me to have it.
Five weeks on and I am still vomiting over 1000ml a day back, it’s not that I don’t want to eat and drink, I do, it just does not want to stay down for some reason.
27th April 2009:
Now for some good news! On Friday I went to Edinburgh as I was nominated by Linda and Phil from the Didsbury Rotary Club, for a Rotary Young Citizen Award and was one of the five winners to receive the award. It was a long drive but we stopped at the service station for food and drinks, we didn’t arrive in Edinburgh until after 4pm. On the evening we arrived I went to see McFly in concert with one of the other winners (Leanne), Leanne’s parents and my mum. I had to be at the Corn Exchange for 6.45pm. When I arrived at the venue I was given the surprising news that I was to meet the boys from McFly. Both Leanne, her parents, my mum and me were taken round the back of the venue and introduced to the boys, they were great and after giving us a big hug they chatted about why we had been given the award, they were shocked when they were told how much I had raised. We then had some picture taken before going to watch the boys on stage with all the other girls screaming in excitement. I was surprised when McFly mentioned me on stage and everyone clapped and cheered me when McFly had finished talking about me. On the Saturday morning we had to be at the Corn Exchange for 10.15am so that I could have a quick interview with Konnie Huq who was presenting the awards live on the BBC News 24. Konnie was a presenter on Blue Peter for ten years before leaving the show last year. We arrived at the Corn Exchange just in time thanks to Linda’s good driving and my good navigation system around Edinburgh, which was a nightmare to drive round due to all the road works they have going on at the moment. I met with the other winners before being sat on stage ready for the awards to go out live on the BBC News at 11.30am.There were over 2000, Rotary members from all over the world in the audience, I was a bit nervous as I had just been sick before going on stage and was worried in case it started again while I was on stage. I was the last winner to go up and Konnie asked me a few questions and showed a short film about me as Eve had been to film me in hospital the week before and had also filmed the girls from Wish Upon a Star and one my doctors, Mr. Neil Oxborrow. I managed to make the audience laugh a couple of times with my answers, which is always a good thing. I received a lovely glass trophy and a certificate and I am told I have also got £500.00 to come to me for my charity, which will go towards my target. After the ceremony we had lunch and some more pictures taken on stage. Lots of people kept coming up to me and congratulating me on my award and some gave me money towards my next target, all in all I was given £80.00 for my charity. One man even gave me his business card and said he may be able to help get my book published, I have emailed him today so we will see. I would like to say a big thank you to: Mike, Sue, Ann and the other lady who gave me money for my charity.
Then mum and I went into Edinburgh to do some shopping while Linda and Phil went back into the afternoon Rotary event.
While mum and I was out I saw the Top Gear presenters, Richard Hammond, Jeremy Clarkson and James May, mum asked if I could have my picture taken with Richard but this woman said “No” but I still took some of Richard and Clarkson. Linda than rang my mum to say she was on her way to pick us up so that we could all go for tea before heading back to the Corn Exchange to watch a concert. It was a Scottish Variety Performance. I had arranged to meet Leanne (one of the other winners) at the concert and we all sat together. I must say we really enjoyed it. The show finished about 11pm, I was shattered by the time we got back to the guest house.
2nd May 2009:
I had the gastric emptying study done yesterday and pleased to say I managed to drink the stuff they gave me and was only sick a little bit.
23rd May 2009:
The hospital phoned on Tuesday to say the doctor had looked at the gastric emptying results that I had two weeks ago and wanted to see me to discuss the results. Mum and I were asked to attend the hospital the next day. After sitting with the doctor and her asking if the sickness had stopped, I explained that things had settled a little, but I was still being sick everyday. The doctor then told me that the results showed that I had severe form of gastric emptying and that any food I eat is not moving as fast as it should, which is why I am being so sick, on top of that the doctor said I have so many tumours in my tummy that they are not sure if any of the tumours are on a particular nerve that is making things worse. They want me try Erythromycin, one tablet four times a day for four weeks (this is normally used as an antibiotic, but in my case it’s being used to make my food move more quickly), if it helps I have got to continue taking it for another four weeks. But if it does not help after the four weeks, I have got to stop taking it and try this other tablet for four weeks (can’t remember what it was called). I go back and see the doctor in eight weeks and if things are still the same they will talk about trying hypno’ therapy, if that does not help I may have to have my stomach removed.
The doctor said they are running out of medication to try, which is why they think the tumours maybe making things worse. Let’s just hope these tablets work and I don’t have to go down the path of having my stomach removed.
I have passed my exams and I have been excepted into Chester University to study TV/Radio Media, mum and dad said they are very proud of me as I am the only one in the family to ever have gone to University, which made me feel really happy.
2nd November 2009:
I have now got the results of my brain scan and chest x-ray that I had in September. The findings on brain scan were as follows:
There are multiple small nodules in the subcutaneous soft tissues of the head and neck, and the deep facial spaces, and further in the medial and superior aspects of both orbits. There are possible small mass-like nodules within the cavernous sinuses. There are further multiple bilateral lesions affecting the exiting cervical nerve roots and cervical plexuses. The appearances are in keeping with neurofibromatosis. I had a normal cerebrum, brainstem and cerebellum for age. Normal ventricles and basal cisterns. Normal midline structures and craniocervical junction. Normal major cerebrovascular flow voids. Comments: multiple head and neck subcutaneous soft tissues and deep facial space and orbital extraconal, cavemous sinus and cervical nerve roots and cervical plexus neurofibromas. The appearances are in keeping with neurofibromatosis. No intracranial large mass or hydrocephalus.
9th November 2009:
University is going good, hard work but good fun too. I am on a billboard pictured with my Ronnie gran, the poster has been put on three different bus stops arround Manchester. Cadbury’s Wispa Gold asked people to write in and tell them about someone they love and that they would pick so many of the entries and put them on billboards around the UK. Mine was one of the ones chosen.
17th November 2009:
I went to see Dr. Watts last week over the sickness, mum spoke about me seeing the doctor in Liverpool who is doing pioneering treatment which involves a special pacemaker being attached to the stomach, which had been successful on another young woman who has “Gastroparesis”, she did not think I would be an ideal candidate for the treatment due to the tumours in my tummy. But my GP said she will send me to see him if want to get some advice off him, I feel I am back to square one this week with the sickness and just feel really drained at the moment, this week has been particularly bad with the sickness. The doctor also spoke to me about the brain scan results and she is going to show the results to the neuro surgeon due to the following “possible small mass-like nodules within the cavernous sinuses and the further multiple bilateral lesions affecting the exiting cervical nerve roots and cervical plexuses”. They are going to compare the scan with the last one that I had in
April and see if these latest results are something new.
I have just spent another week in hospital due to this sickness, but I also had an infection this time too.
I had been to Chester with Uni’ and really did not feel very well and phoned my mum who told me to go and see the nurse on campus, which I did when I got back, the nurse was just leaving but said that I did not look very well and she phoned the GP who I normally see when I am at Uni’, the receptionist told her they had no appointments and that she would have to ring the out of hours service, which the nurse did only to be told she was to ring the GP back as they were still open and should still see me. After having no further look with the receptionist I decided to wait until the surgery was closed and ring the out of hours doctor up again.
By the time I got to see the out of hours doctor I was feeling really poorly, he had a look at me and sent me straight to hospital, I phoned my mum and my brother (Chris) and my mum and Chris met me at the hospital, I was kept in and put on a drip to get some fluid back into me.
2nd December 2009:
I am feeling much better after my recent hospital stay. I was at the MRI last week seeing the doctor over my knees. He said that I need surgery on both knees and that they will try keyhole surgery first, if I agree. I asked if I could think about it so he’s given me three weeks to make my mind up. He was really good looking and I said if he does it than I will have it done lol… But he is the reg’ and only assist in the operation’s. I asked him to put a comment in my NF book for my NF doctor and told him that doctors normally include their mobile number so the NF doctor can ring them if she needs too, he started laughing lol, well, it was worth a try lol…I go back and see him on the 21st December ’09. The operation that I need is realignment surgery to both knees. The doctor was really good and explained that the kneecap normally sits in a groove in the end of the thighbone called the trochlea. When the knee bends and straightens the patella moves up and down in this groove. This movement is termed ‘patellar tracking’ and if the patella sits centrally on the femur and does not deviate then no symptoms arise.
But if the patella has excessive outward or lateral forces then it can move in
an abnormal way causing discomfort and the feeling of instability. In severe situations the patella can even dislocate from its correct position and pop out of the side of the knee. This is why both my knees keep giving way.
I was invited to 11 Downing St in London to meet The Chancellor of the Exchequer, Rt Hon Alistair Darling MP. I received the Diana Gold Award along with nine other young people who had all won the Diana Award over the past ten years and the gold award was to mark the tenth anniversary of the Diana awards. Over the last ten years the Diana trust has awarded 27.000 awards to young people. The awards were on TV.
Charity Ghost Night:
The spook night was really good, It’s hard to believe but lots did happen and when the channel M guy (Ben) was filming a fire extinguisher came flying off the wall but they could not show it as a couple of people swore in shock, one guy got scratched on the back of his head, which must be 4ins + in length, we had some pebbles slung towards us and other people experienced some things too. Click on the picture to watch a clip from Channel M News.
I received a phone call to say that I am carrying the MRSA bug and that I have got to be treated with two different creams one that go up my nose and I also have to bath in this liquid soap every day for the next three weeks, I have got to have three clear swabs before surgery can now take place. MRSA stands for Methicillin Resistant Staphylococcus Aureus. Staphylococcus Aureus is a bacterium commonly carried on the skin. My mum asked the doctor how I had manage to pick MRSA up and seam to think it possible that I picked it up when I was last in hospital in November.
I have had a bad few days with the sickness and had to have some fluid via a drip and an anti-sickness injection given at the hospital.
Doctor Watts had been told about my recent trip to A/E due to the sickness and she’s asked to see me again next week, I was not meant to be seeing her again until August so I am not sure why she wants to see me so early really.
I went to hospital this week to see the doctor over my continued sickness as I was taken into hospital on Mothering Sunday due to the sickness being so bad.
Mum took some pictures of my stomach with her as my stomach keeps swelling up like balloon and going very hard.
The doctors want me to have a Gastric emptying study done, this procedure will be done by the nuclear medicine physician using radioactive chemicals that will measure the speed with which my food empties from my stomach and enters the small intestines.
When I have the gastric study done I will have to eat a meal , normally scramble egg on toast is given, which will be mixed with a small amount of radioactive material. I will also be given some fluid to drink, which will also have a small amount of radioactive material. A scanner will be placed over my stomach to monitor the amount of radioactivity in my stomach for several hours after I have eaten the meal. As the food empties my stomach, the amount of radioactivity in the stomach should decrease. The rate at, which the radioactivity leaves my stomach will reflect on the rate the food is emptying from my stomach.
I have received a letter from Buckingham Palace, when I opened it, inside was an invite to the Queens Garden Party on the 22nd June for both my mum and me. So I have got something nice to look forward to. The letter states that we must wear a dress and a hat and unfortunately we cannot take any pictures as they will not let you take your camera in to the grounds of the Palace.
This is our invite, but not the tickets
I went along to meet Mrs Kirsty Craig (Daniel Craigs step mum) in Chester. This is because not so long ago, I won a business connection award and Santander Community Award. This was because the style of work that I have been doing and the skills I have used are to a business standard. And due to do doing a lot of community work I was awarded the Santander award. I was unable to go to the event on the Friday. This was because I was in Ireland at the time. So I met Kirsty on the Friday. Please see the picture below of me reserving the business connection. I was happy and honoured to reserve both of these awards.
I went to see Dr. Watts last week, Dr. Watts is the doctor that I see for my gastroparesis, I have not seen Dr. Watts since I was in hospital as I normally see one of her registrar’s, anyway Dr Watts was really nice and we had a chat about how things had been going over the past few months and she gave me the results of both my last breath test, which had both come back clear. So I am not allergic to milk and I don’t have an infection in stomach.
After telling Dr. Watts how my sickness had been she said that it was important that I came into hospital when the sickness gets really bad, I told her that I felt silly coming into a busy A/E department just with sickness when there are people who are bleeding to death sat in the waiting room.
Dr. Watts said that it was very important that I did come into hospital as if I got too dehydrated it could be very dangerous for me with my condition and that if it made me feel any better that she would write a letter for me saying that I suffer from a severe form of gastroparesis and that she (Dr. Watts) as asked me to come into A/E department when the sickness gets bad and that she must be informed that I am in the hospital.
Dr. Watts is going to send the letter to me for me to keep. I have got to go back and see her in three months.
I also saw Dr. Sue Huson this week, if you remember Dr. Huson is my NF doctor and as I had not seen her for a while she said that she needed to see both my mum and me. We were running late like normal due to my transport being late, which was not the drivers fault, I am really grateful that they take me to all my hospital appointments.
I am now home after having two weeks away with my parents,
Unfortunately I still had a few bouts of being sick and it was a case that I carried a paper bag around with me, I still had a nice time while I was away but unfortunately I took poorly on the flight home, the stewards asked over the speaker if anyone with medical knowledge was on the flight, a nurse came forward, I was put on oxygen for the rest of the flight home and given aspirin to thin my blood. The pilot asked to be kept informed as he was going to divert to the nearest airport so that I could be taken off the flight and taken to hospital but I was ok, they arranged for the flight to be met by a paramedic who came on board the flight and carried out my observations he then rang for an ambulance to meet the flight and take me to hospital, my mum came with me in the ambulance. I spent the rest of the day in hospital with my mum and dad by my side. I am much better now, they think that I may have had a blood clot but they are not sure. I have now got the letter off Dr. Watts to take with me to hospital when my sickness gets really bad, I just hope I never need to use it.
Mr. Oxborrow said I was reviewed at there x-ray meeting and it was felt that surgery was probably not the way ahead at the moment. Mr. Oxborrow and I agreed to simply observe my spine for the time being. The plan now is to see Mr. Oxborrow in nine months with a further x-ray on arrival if things have got any worse at this time I may have to re think about having the surgery. But this would be a very big operation with no guarantee of it helping with the pain. If I get to the point that I can’t cope with the pain he will look at things again.
I wanted to know when I decide to have children will I be able to have a normal pregnancy and delivery or will the titanium rods make a difference to how things go. Mr. Oxborrow said that I would be able to have a normal pregnancy, but I may find my back is more painful, which is not uncommon for any woman having children, he did not think that I should have any problems carrying a baby to full terms. He did say that he was unsure about me having an epidural due to the tumours on the spine. He did not think the pain killing tablets that I am on would be safe to take during pregnancy. If when I am ready to start a family and my back does worsen I can always elect to have my delivery by caesarean section to prevent more strain on my back.
I went to see Dr. Lieberman (pain specialist) in regards to my treatment he is not going to mess about changing any of my medication as I am coping reasonably well on what I am taking. The only other thing that was mentioned was the subject of me having children and taking Gabapentin in the future. Dr. Lieberman said I will have to stop taking the Gabapentin but if the got really bad that I could take Morphine. The safety of taking Gabapentin during pregnancy has not been established but my doctor does not recommend me to take it during pregnancy. When the time comes for me to start thinking about having a family he will talk more about how the Morphine will work for me.
I went to see my gastro doctor this morning (Dr. Watts), Dr. Watts is being really nice now and we chatted for a while, I explained that things were not much better and that I had not noticed any benefit from my weekly Hypnotherapy sessions. But as I said to Dr. Watts I will give anything a try and I still have six weeks to go with my Hypnotherapy. Dr. Watts explained that mine was a complicated case due to my NF, which is why I am seeing her and not any of her Reg’ doctors. when I first met Dr. Watts over two years ago now, I was not keen on her. When I was in the hospital back in April 2009 (I was in hospital for four weeks) Dr. Watts came into my room and shouted at me for doing my college work, which still needed to be done whether I was in hospital or not. But now Dr. Watts is really nice and she mellowed so much since our first meeting.
Imagine having a stomach flu that never goes away; endless bouts of nausea and vomiting up undigested food, bloating of the stomach and food washing up into your mouth. That is what gastroparisis is like for me. One minuet my tummy is flat the next I look a so I am nine months pregnant
Gastroparesis, also called delayed gastric emptying, is a medical condition consisting of a paresis (partial paralysis) of the stomach, resulting in food remaining in the stomach for a longer period of
time than normal. Normally, the stomach contracts to move food down into the small intestine for digestion. The vagus nerve controls these contractions. Gastroparesis may occur when the vagus
nerve is damaged and the muscles of the stomach and intestines do not work normally. Food then moves slowly or stops moving through the digestive tract.
Dr. Watts wants me to try Colofac, one tablet three times a day for the next six weeks to see if it
helps with the bloating. Colofac is normally used for IBS (irritable bowel syndrome), I also had to have a blood test “I’m terrified of injections. They hurt like hell ! The syringe reminds me of a medieval torture instrument, and the needles are far too long!” My mum came in the room with me and I think I must of almost broke her fingers as I squeezed her hand that hard, “sorry mum”. Dr. Watts said she would write to me if there was anything wrong with the blood results.
On the 17th March my mum and me were invited to London for the V inspired awards. The venue was being held at the indigo2 at the O2 arena. It was great to meet so many inspiring people and everyone was really nice. Leigh Frances was at the event and in fact it was Leigh who was announcing the spirit award winner. He was so funny and had the audience in stitches. I could not believe it when Leigh announced that I was the winner. I won a trophy (really heavy) and £1K towards any project that I am doing for charity.
I had to go and see Mr. C Duff who is the plastic surgeon, we had a chat about some of the new tumours that I have and it was decided that they should be removed, he was going to do the operation at the end of April but I have got a charity event and I don’t want to let anyone down so I said I will have the surgery after my event.
What is a PET Scan?
A PET Scan, or Positron Emission Tomography Scan, is an imaging technique that allows physicians to examine many organs of the body and is helpful in diagnosing many diseases, such as cancer. Other scans such as a CT scan or MRI scans , only show organ structure, where a PET Scanner shows organ structure and function.
What is Flat Foot?
Flat foot is a condition where the longitudinal arch or instep of the foot collapses and comes into contact with the floor. Flat foot can also be caused by fallen arches. Wear and tear can weaken the tendon that is responsible for shaping the arch. Fallen arches can also be caused by injury. The treatment for flat feet needs to be evaluated by a doctor or health care worker to determine the treatment.
The doctor was not sure if my NF had anything to do with my flat feet, he is sending me for physio’ and as I mentioned I am having shoe inserts fitted to my shoes.
If you have foot pain and think you may have flat feet, try the following test, which help determine your arch type.
- Foot print test when your feet are wet: look at your footprint on the floor. The front of your foot will be joined to the heel by a strip. If your foot is flat, then the strip will be the same width as the front of the foot, creating a footprint that looks stretched. With a normal arch, the strip is about half the width of the front of the foot. If you have a high arch a thin strip will connect the front of the foot with the heel.
- Another test you can do is: put your shoes on a flat surface and view them at your eye level from behind. See if the soles of the shoes are worn evenly. A flat foot will cause more wear on the inside of the sole of the shoe, especially in the heel area. You will notice that the shoe will easily rock from side to side. A flat foot will also cause the upper part of the shoes to lean inwards over the sole. Both shoes should wear about the same way.
Yesterday I had to go to a meeting in Manchester and my mum met me at the Royal College of Manchester on Oxford Road, we were just stood by the road deciding which way to go as I was early for my appointment so we had decided to go for a drink. The next minute this young man was knocked of his bike by a woman coming out of a side road, it was very upsetting to see. Mum gave first aid while I called for an ambulance and directed the traffic. Another young man joined mum who said he was in his first year training to be a doctor so he also check him out. He was very lucky to have only hurt his leg, he was wearing an helmet which saved any head injury. The young man was talking and told us his name was Tom, mum then phoned one of his friends and told them what had happened and asked if they would meet the ambulance at the Manchester Royal Infirmary. about an hour later the police rang my mum to ask if she would do a statement as to what happened, the police said Tom had been really lucky and had got away with just a leg injury. It was very upsetting to see but just so pleased that Tom was OK.
23rd June 2010:
Yesterday I went to the Queens Garden Party with my mum, which was a great experience. When I woke up I was really excited I never slept well all night. I tried on like 6 dresses as I had bought so many and 5 minutes before the photographer came I got changed again.
When the Bentley and David (my Chauffeur) arrived, I was so excited and when I seen how beautiful the Bentley was, I was made up, I was so happy and felt privileged that someone had organised this ride for me. I loved the smooth ride there and back, and it was really comfy. I think I might invest in a Bentley ha, ha,. When I got to the garden party I was made known and taken through, after several pictures were taken by the press. I went through the Buckingham Palace gates and into the garden, I had some lemon juice and lined up for some butties and cake. The food was lovely and the cakes were lovely too. I enjoyed the iced coffee. I then lined up and waited to see the Queen and the Duke go past, it was a really hot day,
Two bands were playing throughout the day and that was awesome and so relaxing. I sat back in the sun catching a sun tan near the lake eating a lovely ice-cream. My day was amazing and I am so happy I was invited. David my chauffeur was such a nice guy and very friendly and he helped to make my day special too.
The time table for the day ran as follows:
At 3.00pm the royal gates opened, 3.30pm tea was served in the main tent, which were cucumber sandwiches and ham sandwiches along with some very fancy cakes and iced coffee, tea or juice.
Around 4.00pm the National Anthem was played to announce the arrival of Her Majesty the Queen and members of the Royal family.
The guest to the garden party formed two lanes to allow the Queen and members of the Royal family to move through the guest. While the Queen was taking tea in the Royal tent my mum and me went and sat by the lake eating an ice-cream. At about 5.50pm the Queen and members of the Royal family departed and the National Anthem was played. After everyone clapped the Royal family we went back to the lake, it was a lovely day and one that both my mum and I will remember for a very long time.
I am really grateful to the Manchester Evening News for arranging for me to travel by Bentley and to Bentley for agreeing to take me.
4th October 2010:
I have enrolled on a cach course at the local college where I am applying to be a teaching assistant, it is a one year course and I now have a placement at my old high school, so hopefully I will pass the course and become a teaching assistant.
My charity spookathon went really well and I would like to thank the following people for supporting the event. Craig Gazey (Graham from Corri’), my ambulance drivers, friends and family The Manchester Paranormal Team, Paul (09 Management), Will Hayes (Candidate 23) and the M.E.N readers for supporting my event.
I would also like to thank the person who very kindly sent me £200.00 for the charity. I would have liked to have dropped you a line but you did not include your name or contact details, but I am truly grateful to you. “Thank You”.
I have just found out that I am the regional winner for the Spirit Award for all round commitment to volunteering and will no go forward to be named the overall winner next year.
I have also received an invitation to the Lord Mayor’s Annual Reception on the 25th November, this is a very special event on the civic calendar and something that I am now looking forward too.
Work starts on my book on the 17th November and I am still keeping fingers crossed that it will on sale in time for Christmas.
7th February 2011:
Great news, my book is now live, please go to my items for sale link for more information on how you can buy a copy of my book.
I have just found out that I am one of the National Finalist for the Spirit Award for all round commitment to volunteering, I am off to London in March with my mum.
28th October 2011:
I have been very busy over the last few months, not only with hospital visits but with University, fundraising, doing radio interviews about my book, which is still selling well.
I won the Spirit award and was given my award by Leigh Francis, in London. Leigh was really funny and such a nice guy. I met so many other young adults who had done amazing things for their community and everyone in the room was a winner to me.
Great news, my book is now live, please go to my items for sale link for more information on how you can buy a copy of my book.
I have just found out that I am one of the National Finalist for the Spirit Award for all round commitment to volunteering, I am off to London in March with my mum.
8th December 2011:
I have had a busy month at University and will be glad to take a rest over Christmas. I have also been busy getting ready for my charity spook night, which I had last Saturday, over 30 people took part and everyone had a great night, a lot of people asked if I could arrange to have a ghost night in a castle so I am going to look at arranging that next year.
I have got some really exciting news to tell you all in the New Year, but I have got to bite my tongue till then.
I recovered well from my last surgery but after my next charity event next week I have got to go back in hospital for more surgery, Mr. Christopher Duff is going to do the surgery, he is a really nice guy and very understanding.
3rd January 2012:
I have had a few busy weeks over the Christmas holidays.
Mr. C Duff, chatted about the tumours that needed removing, Mr. Duff said he can only have me in theatre for one hour and he will remove what he can in order of priority. When they were knocking
Mr. Duff was able to remove all the tumours, I was in hospital two nights as I had taken poorly and kept being sick, he said I may be in over Christmas if things don’t settle down. But I came out late Christmas Eve.
On Saturday the 31st December 2011, it was announced publicly in the Queens New Year Honours list that I am to receive the M.B.E. The vast majority of people recognised in the New Year’s Honours list include those supporting the Big Society by making a real difference to their local community through volunteering, fund-raising, social action and philanthropy. I am still very much in shock by this news so please bare with me and I will post more about this asp along with links to all the press and TV coverage that have covered the story on me becoming an M.B.E.
I was one of three people receiving an Honour on the New Year’s Honours list that was invited down to London to meet with the press. The two other people being, Dr M Philippou, who was also to receive an M.B.E who is focused on helping young people move away from gang related crime by giving them an incentive to be ‘STARS’ (Social, Trustworthy and Responsible) and Christopher Preddie, who receives an O.B.E . Christopher had devoted his life to youth work and trying reduce crime. He uses his own personal experience to talk to youth groups and prisoners about crime and the huge impact that it can have on your life.
My dad took us down the night before as we had to meet with the press really early. Can you believe it when I say we were able to drive into Downing St’, loads of people were stud outside the gates watching as we drove in and parked up while the police searched our car to make sure we were who we said we were. It was all very exciting, we were then showed where to park our car at the back of 10 Downing St’. We were showed in to this large room (Chambers) and given drinks and congratulated by members of staff in the room. My mum and dad sat behind me and I was told to sit in the middle at the head of this large table with the other two people who had also been invited told to sit at the side of me. The door opened and about 30 people from the press came in and sat round the table, they were each given notes as to why we had been given the honours and we were told to say a little bit about the work that we do and at the end they were allowed to ask questions. I was asked to go first, I spoke for about 10 minutes just telling them about the charity and why I felt it was important to me, then it was Dr. M Philippou’s turn, Dr. Philippou was one old type school teachers and took us back to when she was a young girl at school, after 35 minutes of her talking they had to ask her to finish, but she still had a lot more to say and carried on for a further 15 minutes, in the end they had to explain that they were running out of time and that Christopher still needed to say why he had received an honour. At this point she did pass over to Christopher who then spoke for about 10 minutes.
The press asked if I was the youngest person to receive the M.B.E and they were told that I was the youngest person this year. After 15 minutes of answering questions we were each interviewed separately. When I got home I loads of TV and radio interviews, I was on the ITV main news, local BBC North West News, Granada News, ITV Main News and a few radio interviews as well as being in the press, I even made front page news of the Manchester Evening News. I hope by receiving the M.B.E it will help my charity work as the children that I help really deserve their wishes to be granted, they each spend a lot of time in hospital having painful treatment. I have been one of them children to spend months in hospital and knowing my wish was going to be granted really helped me. I still attend hospital frequently, I still have to have painful treatment and the older I get it does not get any easer for me, but knowing I can help other poorly children helps me forget about my hospital treatment.
I have not got the date for when I am to receive my M.B.E yet but have been told I will be given six weeks’ notice.
I went to see Dr. Lieberman two weeks ago, Dr. Lieberman is my Pain Consultant, as I am coping with my pain at the moment I don’t have to see him for 12 months, but if my pain gets worse I can just ring him up and he will see me. Dr. Lieberman Congratulated me on my M.B.E and said he will do what he can to help me raise some funds for my charity.
22nd February 2012:
I have now got my date for when I go to Buckingham Palace to receive my M.B.E. I still don’t know who will be giving me my M.B.E.
My mum was in hospital last week having some tumours removed, mum was in hospital a little longer than expected due to her not being so well after surgery. Mr. C Duff did my mum’s surgery, Mr. C Duff really is the very best in his field of plastic surgery and I know that both my mum and I would not let anyone else do our plastic surgery now.
I went to see Mr. C Duff last week, I saw him at St Marys Hospital, while I was waiting to see him I decided to have a play in the play-pen and build a house out of Lego, one of the NF nurses saw me and came over for a chat to congratulate me on my M.B.E and to thank me for attending the NF meeting the week before. I went in to see Mr. Duff, when I went in the room Mr. C Duff smiled and bowed as did the other doctors who were in the room and Mr Duff said have I got to bow to you every time I see you now you have an M.B.E, I laughed and told him “No”. We had a really nice chat and Mr. Duff said the biopsies that were done on my recent surgery came back clear, he also said that he was booking me in for some more surgery in September. While I was talking to Mr. Duff the surgery door opened and it was Professor Evens, he had heard I was in the building and wanted to say hello to me, he joked to Mr. Duff and asked him if he had bowed to me yet, everyone was very relaxed and Professor Evens told Mr. Duff about the NF documentary that I had done and edited myself for part of my exams at Uni’ and spoken to my mum and me about some treatment that they hope to start using with people with NF2 that will shrink the tumours, they are still working on treatment for people with NF1 but it’s all very new at the moment and not everyone would be suitable for the treatment.
I am off to Buckingham Palace next week to receive my M.B.E I have not been told who will be giving me the M.B.E yet apparently I will not be told until a few minutes before. On the Friday I have been invited to have lunch with the Lord Mayor of Manchester and have been told that the Queen and Duke Edinburgh will be attending the event too. I am not allowed to take any pictures at any of the events but we can buy picture’s that are taken of me receiving my M.B.E that are taken by the Palace photographer.
As you can imagine, prior to the formal announcement and investiture there was some correspondence with myself and the Central Chancery of the Orders of Knighthood, the body who are responsible for organising the investiture. I had to confirm that I actually wanted the award! incredibly, I do believe that over the years some people have declined receiving the award.
On the day I was allowed to take three guest with me, which made things easy for me as it meant I could take my mum, dad and brother Chris. We travelled to London the day before as we had to be at Buckingham Palace for 10am on the morning of the investiture. My brother travelled down later in the day as he had to go to work, my dad picked him up from the train station later in the day. Unfortunately, someone had broken into our sheds during the night which delayed us leaving for London, Chris said that he would short it out and told us to get going to London as I was also doing a photo shoot while I was in London. On the morning we travelled from our hotel to Buckingham Palace by car, my brother drove, arriving at the Palace around 10am. We were allowed to park our car inside the grounds of Buckingham Palace, two police officers asked Chris to get out of the car then they asked us to show our invites and iD before being allowed in. There were lots of people outside and I felt really important being allowed through the gates of the Palace.
From start to finish the whole affair was like a slick military operation and there were signs indicating where we, the “recipients”, had to go, and other signs indicating where the “guest” should go. The award recipients were escorted into a large room to be briefed, while our guest were taken into a huge ballroom where the investiture was to take place. At about 10.30am we the investitures had a briefing from the Senior Military Officer from Lord Chamberlain’s office. The briefing explained the investiture process and it was at this time we became aware that the Queen would be carrying out the ceremony. During the briefing we were all told that on entering the ballroom we were to wait for our surnames to be called. That would be the signal to move forward, turn left and then face the Queen who would be on a small elevated dais. Ladies were told to do a courtesy and Gents a neck bow, the Queen would then pin the award on your jacket or in my case, my dress. There would be a short conversation and the Queen would then extend her hand to indicate the end of the conversation. That would be the cue to step back from the dais, courtesy again and then exit the ballroom. What did the Queen ask me? Well, she asked me what I had done to raise so much money and wished me luck and said well done. The Queen was really nice and smiled when chatting to me. After the ceremony we all went outside to a huge courtyard where we had some official photographs taken. I felt like a celebrity and did not want it to end but sadly all good things come to an end. We were soon back in the car and on our way home reflecting on what had been a memorable morning. I still keep asking myself “why me” and keep thinking I am going to wake up and it’s all been a dream. Less than 24 hours later I was yet again in the company of the Queen and Duke as I had been invited to have lunch at Manchester Town Hall. I was allowed to take one guest with me so I took my mum. We were sat on the next table to the Queen and she looked lovely in her pink outfit. The Queen was at Town Hall as part of her Diamond Jubilee tour, marking 60 year’s of the Queen’s reign. When I arrived back home I had to quickly get changed as I was at a charity night with my friends Emma and Kelly, I did not know it at the time but Kelly had arranged for me to meet Peter Andre who was hosting the charity gala night in Stockport. I started to shake when I was introduced to Peter, he gave me a kiss and chatted with me and I had my picture taken with him. It was filmed for Peter Andre’s next chapter, I had a copy of my book with me so I signed it and gave it to Peter Andre. I also met up with Andy Moss from Hollyoaks who I filmed with when I did Hollyoaks, Andy came up to me and gave me a big hug when he saw me and congratulated me on my M.B.E.
30th April 2012:
I have had a very busy few months, I now have my M.B.E. I am also doing the Olympic torch on the 22nd June in Blackpool.
My book is now on Kindle, for more information on how you can buy your copy on kindle please go to my items for sale link ware you will find all the information needed.
I was also nominated to go on the Happy list for the Sunday Independent and was named on the happy list. I still don’t know who nominated me, but thank you whoever you were.
My M.B.E charity celebration night went really well and I raised £383.00 on the raffle.
23rd June 2012:
Yesterday I had an amazing day from start to finish, I carried the Olympic torch along Fleetwood Road, Blackpool.
My mum and I was picked up at 1pm by Melissa (who works for BMW) and Keith (a police officer) in a BMW and driven to Blackpool. Before I could carry the flame I had to meet all the other people who were carrying the torch, we met at our designated collection point so that we could board the shuttle bus that took us to our allocated starting point. My starting point was Fleetwood Road, near Warren Drive. When I arrived at my drop off point there were crowds of people cheering. As I waited for the gentlemen who was passing the flame on to me, I was surrounded by children all wanting a picture taken with me. Carrying the flame was one of the proudest moments of my life. It was unbelievable watching all the children clapping and cheering and hearing the crowds cheering and shouting as I went past, I was surprised so many people turned up with the weather being so bad.
I did struggle to carry the torch and walk the 300 meters, one of the police officer noticed I was struggling and came and helped me, she linked my arm and held the bottom of the torch to help me. A Chinese man and woman kept running out to me and the police had to grab them three times, pushing them back into the crowed. It was very overwhelming and absolutely amazing, I really enjoyed every minute of my day and being part of History.
I passed the flame on to Bolton fundraiser, Stacy Young, who set up the charity Shades after her brother died from skin cancer.
I am off to California to teach some children radio production as part of my placement and I am going to New York to meet with some families from the Neurofoundation, and I will feed back to Professor G Evens and Chris De Winters on how my visit went. The Neurofoundation have also asked to see my book so I’m taking a copy over with me.
This web site is not meant to be technical or full of medical jargon. I’m here as a support for you, to be a friend, someone you can sound-off at when you’re feeling down. If you need any advice or just want somewhere you can meet fellow sufferers then this is the place to be!
While people of any age will struggle to adjust to a life with pain it can be particularly hard for teenagers and those in their early 20’s. At a time when the world should be opening up, offering exciting things, it can feel as if a door has slammed shut instead. Don’t dwell on what you can’t do, but concentrate on what you can, explore new interests you will be amazed how much it helps.
Anyone can tell you it won’t hurt tomorrow. But I’m here to listen while it hurts today.
I will checking my e-mail while I am in hospital so don’t worry I will get back to you.
Thank you to all my doctors, nurses, family and friends for getting me through some of my difficult times.
A new year and this year my mission is to help one of my doctors (Professor Gareth Evens) and his wife (Chris De Winters) raise money for a new charity that they have set up called “Children With Tumours”. The aim of the charity is to send children with tumours on a camp holiday, the first camp holiday is booked for the end of August this year. Also to provide support to children with tumours, including NF1, NF2 and Schwannomatosis and their carers through the following, with the intention of supporting children with all types of tumours. Every penny raised will be going to help these brave children.
it’s the start of a new year and a great year I had last year. Being named on the New Years Honours list and being awarded the M.B.E. I carried the Olympic Torch in Blackpool and landing a job that I enjoy.
I hope to have my second book out later this year, so many people have asked if I will do a second book as they really enjoyed reading my first book and by reading the book it helped them cope with NF and scoliosis in a more positive way.
My brother got engaged to his long term girlfriend (Stacey) Christmas Day, I want to send my congratulations to them both and looking forward to being told the date of the wedding now.
19th March 2013:
I went to see Mr. N Oxborrow, who is my spinal surgeon. It was a late appointment and traffic was really bad, unfortunately there was a bad accident in front of us and traffic came to a standstill. I came off the motorway yearly and mum rang the hospital to explain that I might be late due to the accident. It turned out that I was only 10 minutes late and when on the clinic Mr. Oxborrow said “Hi” to me when he saw me sat in clinic and said that he would see me soon and that I was last to be seen.
I went into see Mr. Oxborrow with my mum, after having a chat with both my mum and me, I explained that I had been in a lot of pain at the top of my back and it had been getting worse, I also mentioned that one of my hands were cold and the other was warm, he did not think the hand being cold and other being warm was spinal related.
He brought the x-ray that had back in 2011 up on the computer screen, he pointed out the curve above the rods and said the pain could be do to pressure from that point. He mentioned doing more surgery by taking the rods all the way to the top, he also mentioned doing intense physio’ and seeing one of his spinal pain team. Mr. Oxborrow sent me for an x ray and said if the spine has worsened he wants me to have a bone scan to see how the bones are at the top of the spine, he is going to phone me and let me know the results. He is not really keen to do surgery unless it is going to benefit me, which is a good thing. I have now got to wait and see if the spine has worsened from my last x-ray. The pain is so bad at times that I am having to take Ketamine, which I don’t like doing as it makes me feel spaced out.
Mr. Oxborrow said he had now reviewed my x-rays and that there was no real change from the last x-ray that I had, but he wants me to have a bone scan to see if there is any increased activity at the end of the metal work. He said that I have quite a long instrumentation which is quite flat and he suspects that this is representing a stress area at the top of my spine where it turns into a mobile spine.
I am having my bone scan on the 10th April 2013, the scan will be done in the Nuclear Medicine Department and I will be having 1. NM Bone Local Upper Limb, 2. NM Bone Local Upper Limb, 3. NM Bone SPECT and 4. NM CT Atten Correct and diagnostic study. The scan will take about four hours and I will have to have an injection, which I am not looking forward too, my mum will be with me and will be holding her hand while I have the injection.
As for the pain in my back I had my bone scan and I am now waiting for the results. I’m still in a lot of pain, I might have to have physiotherapy to help build up my muscles in my back. I’m not really sure what’s going to happen, but hopefully we can find something which helps with the pain.
Some good news. I was awarded the winner of the “Inspiring young woman of the year 2013” I gave a speech and was given a standing ovation.
Dr. Huson mentioned that people with NF can lack Vitamin D and wanted me to have a blood test, I only had blood test yesterday at my doctor’s, the nurse who was doing the blood test could not find a vain and had to ring my favourite nurse at our surgery (Mary Brennon). Mary had some problems getting blood too, but she managed to get some in the end and even gave me a smiley face on my plaster lol. Anyway, back to the hospital blood test. Dr Huson asked me to wait in the waiting room for my name to be called, I hid in the Wendy house as I really did not want another needle, but I knew I had to have the blood test to check my Vit’ D, I went in the room when my name was called and the nurse doing the test said she had to ring for a porter and get an ice pack for one of the blood test as it was down as urgent and had to be taken to the lab’ right away.
I was really tired when I got home and I kept being sick, my gastroparesis has flared up.
Having MRI Scan:
An MRI scan is usually carried out as an outpatient procedure. This means you will not have to stay in hospital over-night. After the scan you can resume your normal activities. However, if you needed a sedative, a friend or relative will need to take you home and stay with you for 24 hours after having the sedative. A magnetic resonance imaging (MRI) scan is a painless procedure that last 15-90 minutes, depending on the size of the area being scanned and number of images needed.
Due to the strong magnetic fields that are produced by the MRI scanner, it’s very important to remove any metal objects from your body, including : watch, ear-rings, rings and necklace. Depending on which part of your body is being scanned, you may be asked to wear a hospital gown. If you don’t need to wear a gown, remember to wear clothes without fasteners, zips and buckles.
Some scans will involve having an injection of contrast dye. The dye will make certain tissues and blood vessels show up more clearly and in greater detail. The dye is usually injected into the arm during the scan. This can make some people feel sick but this could be the thought of having an injection. Needles are scary things.
The MRI scanner is a short tunnel which is open at both ends. You have to lie on a motorised bed that is moved inside the tunnel. You will enter the scanner either head or feet first, depending on the part of your body being scanned.
A computer is used to operate the scanner, which is located in a different room so that it is kept away from the magnetic fields that are generated by the scanner.
A radiographer operates the computer, so they will also be in a separate room from you. However, you will be able to talk to the radiographer through an intercom and they will be able to see you at all times. Normally someone can stay with you, but they will also be asked to remove metallic objects.
It’s very important that you keep still during the scan to avoid the images from being blurred. At certain times during the scan, you will hear load tapping noises. This is the electric current in the scanner coils being turned on and off. You will be given ear-plugs or headphones to wear. Some hospitals let you listen to a CD.
You will have to fill some paper work in, loads of questions to answer. Most likely they will ask for a list of your medications, so just take a list of your medication with you, they also ask about previous surgeries that you have had. The reason for this is some surgeries can leave metal in your body, most surgical implants are safe but they need to be aware of them. I have two titanium rods in my spine and I have had many MRI spinal scans so don’t worry about having a scan. Your scan will need to be studied by a radiologist (doctor trained in interpreting scans and x-rays) and possibly discussed with other specialist. You will not get your results from the scan immediately. The radiologist will send the report to the doctor who arranged for you to have the scan.
One tip for you, if you have a lot of back pain or headaches take a pain reliever prior to the scan. Laying flat for 20-90 minutes can make your back sore.
Good luck, I am sure you will find that having a scan really is not that bad, close your eyes and think of something nice.
29th May 2013:
I have had a busy few months with one thing and another, but I thought you might like to hear about my most recent achievement.
I was invited to the Inspiring women awards on the 17th May 2013. The award ceremony took place at the Midland Hotel in Manchester, it was a lunch time event and I went along with my mum we had to be there for 12.15pm. I won, Oh my God… I won most Inspiring Young Woman of the year 2013. Right I’ll calm down and tell you all about it.
Two weeks before the awards I had a visit from Jacqueline Hughes-Lundy who is the founder of the awards and Tom (Tom was doing the filming). I was told they were filming all three young women who were finalist, but I now know that they didn’t and it was just me! I had an interview and photos taken which I thought the other finalist had done too, but it was just me. It all kind of seems obvious now, but I honestly didn’t have a clue that I was the winner, so it made the surprise all the more amazing when my name was called, they showed a footage of my interview and I was given a standing ovations. They played Peter Andre singing while I was going up to collect my award (I just love him he’s such a caring guy). I really was not expecting to win. I was so pleased to have been told I made the final three. I was over the moon when I won. I was presented with a cheque for £1000,00 to help me with any projects that I want to do, a lovely bunch of flowers and a glass trophy. I was interviewed for the M.E.N, which went in the paper the following day and interviewed for Manchester Radio. You can see the press cuttings on my press link.
I received a letter from Mr. N Oxborrow over the bone scan that I had, Mr. Oxborrow said he had now reviewed the scans and is making an outpatient appointment so he can discuss the scans further with me. My back is so painful, I have had difficulty sleeping, which is making me really tired in the day. I have been taking my strong pain killer med’s which I don’t really like to take as they make me feel spaced out.
There was talk of me having further spinal surgery and taking the rods all the way to the top again, but this again is not going to happen for the time being. I have now got a back brace that I am able to wear, the knee braces help some of the time but when my knees swell they are really painful to wear.
I had to have surgery today in which several tumours were removed due to them causing lots of pain and discomfort. My mum came with me and stayed by my side the whole time.
On the morning of my surgery I mentioned to Mr. Duff (my surgeon) that a new tumour had grown in my thigh, when he looked at it he said its best to have it removed due to how quickly it had grown.
after surgery Mr. Duff came to see me and explained that the tumour in my thigh had several tumours growing on top of each other and had started to grow into the muscle, the tumours that were removed in my neck were like a bunch of grapes, but he managed to get them all.
I had my wounds look at, some had to be redressed, but they were healing well. The scare on my leg is much bigger than I thought it would be (5inc plus) and the same with the scar on my neck, but I suppose they only go as big as need be.
Mum and I have been asked if we will help with the year 5 OSCE Examinations on the 15th January. I have done this many times in the past and I really enjoy helping the doctors in this way and it’s also helps the new doctors to understand more about NF.
Not a good start for the year, my gran (mum’s mum), who I love so much had a fall and landed up in hospital, she also had a mini stroke. Gran was in hospital for ten days and then transferred to a rehabilitation unit for three weeks before being allowed back home. My gran continues to be very confused, but doing well.
My mum had a few hospital visits this month, seeing Dr. Montague over her prolapsed bladder, and her orthotic doctor for new braces to her knees and hands. Mum also had a brain scan and spine scan done.
The pain in my back as been really bad and I have had a few flair ups with my sickness. I saw Dr. Watts who gave me the results of the scan that I had done on my tummy. The scan showed that I have lots of tumours in my tummy along with lots of fluid. I was put on a new tablet called “Ondansetron 4mg”, this medication is given to people who suffer from Gastroparsis. The fluid that showed up on my scan confirmed that I have a server form of Gastroparsis. The doctor is also writing a letter to my works to give them some information about the condition. sometimes when I am sick I feel much better after it and can continue with my work, but my boss always wants to send me home when I don’t need to go home, so the doctor is going to explain this to her.
The doctor is also going to write a new letter for me to take to the A/E department for when my sickness gets really bad as I feel daft going to the hospital just for being sick, but my doctor said its really important that I do go to A/E for IV treatment.
I am at the pain clinic in April over being in so much pain in my back. I am still in a back brace when the pain is really bad, but it does not always help.
Gastroparesis is a lifelong condition, living with this condition not only affects the person living with it, but also affects family and friends. I think it affects my boyfriend and me a lot because we struggle to go out for meals sometimes, this is because I might end up having to leave the table suddenly due to being sick. I haven’t been able to eat a proper meal in the past few weeks without throwing up. I have been dealing with this condition for a few years now, I would like to say it gets better, but it does not. I do have good days and I have bad days, and in work it can be irritating because people think I have a bug and trying to explain that I am not sick because of having a bug, I’m sick due to a condition that I have, its hard for them to understand sometimes.
Gastroparesis is also called delayed gastric emptying. The term “gastric” refers to the stomach. Normally, your stomach empties its contents in a controlled manner into your small intestines. In gastroparesis, the muscles that contract and move your food along the digestive tract don’t work properly so your stomach empties too slowly.
It takes skills and strength to deal with this challenging digestive condition. It means always looking for what does and does not help your sickness, I have pretty much stopped taking milk, I think milk irritates my stomach a lot, the only milk I get is through cheese and if and when I have a chocolate milkshake from McDonalds, when I do though, I am sick. It’s catch 22.
This is not in any way medical advice. Always consult your doctor when it comes to your own treatment.
It is that time again, where I am due to go in hospital, this time its a bit short notice, I did have a missed call whilst I was on holiday, and I did try phoning them back but as they are very busy, there was no answer, during my first week back at work, I had waiting list phone me to say that they have a spot next Thursday (Monday is today) they explained someone was to poorly for the operation and that I am due next on the list. My Pre Op was then the same week on the Friday.
I am not long out of hospital. I had 8 tumours removed in total this time, the ones taken from my groin were like grapes, they were three lined up together. My head was shaved a tiny bit to allow access to the tumour on my head. it is slowly growing back. :). I had my stitches removed 2 weeks later.
During my recovery time, my gran was rushed into hospital, by 999, this was because she has been coughing up blood and vomiting old blood. this was a very worrying stage for me and my family and she was in hospital about a week. She has been diagnosed with Pneumonia, fingers crossed she will be better very soon.
I have been doing some filming for NF today, this was a great opportunity for me to speak about what it is like living with NF. This will be made into a short video, which will be made available to watch on the NF website. In my understanding there will be other people in this video too. Later in the afternoon I did some more filming in a session with other people who suffer from NF, it was great to have a chat together about NF. We spoken about what we would of liked to have known when being diagnosed and the regular things we all have in common. For instance a few people mentioned the issues they have had with schools, not knowing that NF could affect their learning. I am looking forward to seeing the finished piece.
My second book as you know has been published and sales are going ok so far. I was not expecting Germany, Australia, and Spain to be ordering this quickly. I have already been asked if there will be a third book. I guess we will have to watch this space. It’s a digital world now so who knows.
I have had some fantastic news about my Fresh Documentary that I made for the BBC Three online, it has now made it through to the UK TV programme, which will be out this year sometime. It won’t be the whole documentary that I did, but it will be part of it. I am in hope that this will raise some awareness about our condition (NF). I will continue my efforts to get the word out there.
In terms of my health, I have recently been diagnosed with “Meralgia Paresthetica”, this is affecting me quiet bad at the moment , my medication is being upped and it’s knocking me out. I am hating the fact when I am out with friends it will cause me a lot of crippling pain. Evening sneezing can set the pain off. Basically this is what the condition is: Melralgia Paresthetica- condition characterized by tingling, numbness and burning pain in your outer thigh. The cause of Meralgia Paresthetica is compression of the nerve that supplies sensation to the skin surface of your thigh. In most cases, the condition can be relieved with conservative measures, such as wearing looser clothing. In severe cases, treatment may include medication to relieve discomfort or, rarely, surgery. I am going to see a specialist about this to see what can be done. It could be the operation or injections for me. I have also been sent for an MRI of my spine to see how the tumours are getting on, I should have the results in the New Year.
I haven’t done hydrotherapy for a while so its great being back to doing this. Although, I have to go straight in work after it’s going to be a tad tiring for me. It’s a good job I have understanding colleagues that know my situation so hopefully they will be ok with it.
I am still in a lot of pain in my groin area due to this new condition that I have been diagnosed with (I will have to get the name of it again). But I’m sure in within time and taking the my tablets it will get better.
My Ronnie Gran is back in hospital again, Gran was taken back into hospital two weeks ago due to her vomiting blood again, she had to have a blood transfusion. After a couple of days the doctor said my Gran was well enough to go home even though Gran had complained of having heartburn and was in a lot of pain. She was kept in the discharge lounge for over four hours instead of being kept on the ward (they did not even need her bed so she could of stayed on the ward and waited for the transport), on her way home in the ambulance my Gran started to vomit blood again so the ambulance turned round and took my Gran back to hospital and up to the ward that she was on before being discharged, the ambulance driver told them she was not well enough to go home. she was kept for a further 24 hours and then discharged again. Mum is not happy with the doctor who did this to my Gran and has said she does not want this doctor treating Gran again.
The following Wednesday Gran was taken into hospital again (she had only been home a couple days). This time Gran had a DVT in her leg. this clot is huge and goes from the ankle to her thigh. Its been a very difficult time as leaving the clot and doing nothing would of been extremely dangerous, it was decided that my Gran be treated with one injection everyday to thin her blood, but the danger we have now got is if my Gran is to have a bleed from the ulcer again it would be very dangerous with her blood being so thin. The doctor has the blood bank on standby as Gran would require a transfusion pretty quick, Gran would also need to have Endoscopy to try and stop any bleed.
We are keeping are fingers crossed that my Gran is back on her feet very soon, we all love her so much.
Not having a good start to the year, my Ronnie Gran as been in and out of hospital so many times. Every time the phone rings we are worried that it is going to be the care home to say that my gran is vomiting blood again. Both my mum and I have been taken into the relatives room so many times to prepare us for the worse. But I’m pleased to say that my Gran as pulled through each time.
My mum as also been in hospital for surgery, my mum had a TVT band fitted and spent over a week in hospital, mum was unable to wee after the surgery and had to self catheter. mum was out of hospital for three weeks before being taken back in hospital for more surgery on her bladder and spent a further week in hospital, mum is still unable to wee unless she uses a catheter. Doctors are not sure if things will get any better or if she will have to use a catheter for good.
My mum is also due in hospital later this year to have some tumours removed that are causing some pain.
My own health is up and down at the moment. I am going in hospital in November to have some tumours removed that are giving me a lot of pain and growing. I should only be in hospital over night.
I still keep having flair ups from my grastroparisis, but I have not had to stay in hospital with it.
One of the biggest things in my life at the moment is that I am buying my own home and hope to move later this year.
Work is really busy and I also have my own voluntary UK Health radio show every week, I talk to different people about all different health issues, if you would like to to get involved in my show and chat about any health issues that you would like to talk about please get in touch with me and ill see if its something I am able to help you with. You can also listen to some of my past shows by clicking on the following link: Sunshine Ukay Health Show.
My health issues continue to cause me a lot of pain, I am yet again trying a different a brace on my knees in the hope that they will keep them stable.
I am due back in hospital over the next month or so, more tumours are growing all the time and causing pain.
My Ronnie gran continues to be in and out of hospital and over the last twelve months my gran has had sepsis three times and managed to fight it, she is a strong lady. We have got a big party for my gran in June as she will 90 years young, we have got a singer booked to come and sing all her favourite songs.
My gran had to go back into hospital under blue lights twice recently and has now been in hospital five weeks, she’s got sepsis yet again and this time she’s also had a stroke. Gran spent her 90th Birthday in hospital so was not able to celebrate her Birthday in the way that we wanted. Please keep praying for my gran to recover.
My gran is not improving and is being transferred to a nursing home due to the amount of care she needs.
Its with great sorry that I have to tell you that my Ronnie gran passed away on the 3rd August, my mum and uncle was with her when she passed. I believe in life after death and I know my gran will be looking down on us. My gran loved horses and she had two white horses take her on her way to her next journey in life. We are all very upset at the moment, my gran was a friend to everyone and she will be greatly missed by all her knew her. R.I.P Gran xxx.
April 2019 -August 2019
I had my 29th Birthday, me, Sam (best friend), mum, dad, went to Kilder Observatory to do some night time photography, it is supposed to be one of the darkest places in the UK. I love photography so thought to do this as a nice little break with my family. I don’t get out much these days and my hobbies and interests are pretty limited, so I have joined a Mental Health choir (Bee Vocal) we meet every Wednesday and we perform/sing at the Bridgewater hall in Manchester. I am really enjoying the experience.
We were invited to represent Manchester City at Wembley Stadium for the FA Community Shield. We were invited by Prince William and the charity Heads Together to help launch the new Heads-Up mental health campaign. Joining Bee Vocal is really helping me, and I have met so many people who understand how you may be feeling.
The choir that I mention above where holding auditions and I auditioned for a big event and was successful (second best actually as someone dropped out and then they phoned me) We sang on stage at the Royal Variety Performance alongside Emeli Sande, at the end of the performance Emil Sande invited us to sing on stage with her at Apollo in Manchester.
i have been in hospital having some more tumours removed that were giving me a lot of pain. I was in hospital over night , I spent a few days with my parents to recover from the surgery. Early on in December we sang at the ITV Carol Concert in Stockport which will be shown on Christmas Eve
Well life goes on and not a lot as changed for me. I have been in hospital a few times to have more tumours removed. It looks like I will be going in again later this year too.
My health is not getting any better, more tumours growing and some causing a lot of pain. I have a great Plastic surgeon (Mr. C Duff)who understands how painful these NF tumours can be. I now suffer with my bladder and suffer from an overactive bladder, this is really stressful as I need to make sure I can always get to a toilet quickly due to the urgency of needing to go to the toilet.
What a year its been March 2020 – December 2020:
My Granddad passed away at the beginning of March (my dad’s, dad), he was 94 years young. He was in hospital and all the family was with him when he passed. Covid 19 had only just been announced at the time and my granddad and been in hospital a few weeks. My best friend Leon from work, also passed away two days later due to mental health difficulties and then I had both funerals on the same day.
My 30th Birthday was cancelled due to this thing called Covid, my friends, neighbours, family tried to make it as special as they could by decorating the outside of my house, friends coming in cars and waving from the car windows dropping gifts off, zoom quiz with my friends. It was rubbish, as I had planned to have a BBQ and see my friends and spend time with niece. I even got a slide and swings for my goddaughter, niece, nephew to play on.
My mum had a nasty fall and badly broken her shoulder, she needed surgery to have plate and screws fitted. Her doctor has said she may never get the full use back in her arm due to how bad the brake.
My nephew turned one in August and I managed to spend time with him in a local park and see my niece. but no hugs – 🙁
like many of you all my hospital appointments are being done over the phone or by video call, apart from my scans.
I’m working from home, so I don’t really get to see anyone due to the lock down. One of the worse things about this lockdown is not seeing my Niece and Nephew, my niece was four on Christmas day and my nephew was one in August. I talk to my niece on video call, which is lovely. my nephew is growing up fast, he is talking, and so funny, I love them both so much. My parents are struggling not seeing them too, especially my mum.
Finally had my garage converted into another room, I only used the garage as a junk room so by having the work done it encouraged me to get rib of all the rubbish I had in it,
I am having IVF with a pinch of science called PGD (Pre-implantation genetic diagnosis). This ensures that my genetic disability Neurofibromatosis, will not be passed down to my future child. I am currently looking for a sperm donor through banks, but due to Covid 19, there has been huge delays on gentleman coming in to donate and given the banks have also been closed this has delayed my treatment by 6months-1year. I am still single, as I have not met the right person that I want to spend the life with.
The IVF is completely on hold at the moment as we are having issues with the sperm d
onation side of things as we require. to have the blood of the donor to do the genetic profiling for PGDT. It is ok. as this provides me more time to save, work hard in my career to be promoted and i believe everything happens for a reason. In April, I will be talking at the nF conference, which i is a world-wide conference. I am very excited for this as i love raising awareness about NF.
My good friend Sam is pregnant with. a baby boy and little one is due in April, so it’s all very exciting for us at the moment and I cannot wait to meet him. I suspect, i might even get to miss practicing once again, this time due to a pandemic.
I have written two books about living with Neurofibromatosis that gives a lot more information and in a lot more detail along with information from some of my doctors. My first book “Living With Neurofibromatosis and Scoliosis” talks about how I have coped with living with NF and Scoliosis, the treatments that I have received and tips on coping with test and treatment. The second book gives an update on my story and stories from other people who suffer from Neurofibromatosis, which will give you an understanding on how NF affects people so differently. for more information on how you can buy copies of either of the books please go to the following link
NF is a life-long condition, and you must learn to live your life, and not let the disorder rule your life. The more you understand the more you will be in control, so be sure to ask questions of your medical professionals. Find someone you trust, and share your feelings, fears and frustrations. The challenges posed by having NF are hard, but they can be overcome and you are not alone. They say a problem shared is a problem halved. You can always email my mum or me and we will both do what we can to help.
I hope one day we can say “We have found a cure for NF, Neurofibromatosis is now history”.
If I can offer help and support to anyone, please contact me. We are all here to help each other. That is a gift we can give each other. Thank you for reading my story. Thank you to all my doctors, nurses, family and friends for getting me through some of my most difficult times. There is a lot more information in both my books which you may find helpful to you or your loved ones.