How we cope with our beautiful daughter's condition.

We are often ask how do we cope? So we will try and explain:
Many times people have said to me, 'I would never cope if it was my child.' I used to think like that, but one thing you have to learn very quickly is that the only way to get through long days and seemingly even longer nights is just to get on with things as best you can. Some days are tolerable, some not, however I believe that all parents, naturally put the needs of their children before their own, Sometimes I would leave the ward, go into the hospital corridor and break down in tears, because I am not able to take away her pain.  Kirsty helps me so much she is a very bright, happy child despite all the problems she has faced in her life she never complains and is always thinking of ways she can help other poorly children, she is one in a million.

9th March 2005:
It’s now 7pm on the 9th March 2005; Kirsty is now in hospital and settled on her ward and making new friends. Kirsty is awaiting major surgery on her spine, which she will be having tomorrow. I will be staying with Kirsty all night and John will be going home but returning early tomorrow.

Dr Tarek calls to see Kirsty and explains what is going to happen tomorrow (all a bit worrying), Kirsty is really very calm about it all and does not seem bothered. I try to stay calm too but don’t think I'll get any sleep.

 Kirsty settled and sleeping night before operation

6am Thursday
I go for a shower before Kirsty wakes up and Mr Oxborrow (the doctor who is doing the operation) calls to see Kirsty, he explains the operation will take all day; he chats and tries to relax Kirsty. It’s 8am and time for Kirsty to get ready for theatre. A nurse puts some cream on the back of Kirsty’s hands and then she has some electrode wires connected to her head (this will make sure the spine is not damaged during the op’). Both John and I go down to theatre with Kirsty along with a nurse but they would only allow the nurse and myself in with Kirsty due to the space. I try really hard not to get upset; I don’t want Kirsty to see me getting upset. I give her a kiss and hold her hand until she falls a sleep. She is now in their hands for the next 12 hours. We go for brew and just wait not really knowing what to do for the next 12 hours.

This is so difficult, every minute seems like ten, we just walk the corridors of the hospital in a daze, we go back and to the ward waiting for news. 12 hours is a long time and I am trying really hard to keep strong but I can’t help thinking about what Mr Oxborrow said to me and all the risk involved in the surgery. I pray to God everything will be ok. 

At about 4.30pm a nurse calls us to say Mr Oxborrow wanted to see us outside the theatre (this is not looking good) what's gone wrong, I'm so nervous and as we approached the theatre   Mr Oxborrow came out to see us, he was looking worried (I could not holdback the tears, believe me I did try) he told us that he had to stop the operation due to complications and that he will have to try and complete the operation next week when he has looked at the situation again. Kirsty was taken on to H.D.U (where she stayed for the next 4 days). She had tubes and wires coming out from all over her. We made sure she was comfortable before leaving and trying to get some sleep. I was given a parent’s room and John went home. I managed to doze through sheer exhaustion. As I fell in and out of sleep, thoughts of what had happened the day before and knowing she's got to go through it all again swirled through my mind. It’s hard to see her in so much pain, monitors keep bleeping, the nurses keep running in, Mr. Oxborrow calls to see her again before going home him self, he is really concerned with what’s happened in surgery. Mr Oxborrow explains that it is very important that Kirsty is only log rolled until she has her next operation (this takes five nurse's) and is not allowed to sit up.

She has been really sick during the night and manages to get it all over the nurses, so when I go to H.D.U in the morning the nurses are sat in different uniforms telling me that they had to change after Kirsty being so sick.

On the 4th day they take out the tube, which is going into her lung to drain the fluid, Kirsty is very brave and copes with this well. Mr Oxborrow called everyday to see her and some times twice. He is still very concerned by what's happened. I am worried about her going back to the ward, she really doesn’t look ready, she is still being very sick and in a lot of pain. But they need the bed (only 4 beds on the unit). Mr Oxborrow said he would be happier if she stayed on the unit too.

Back on the ward
Still attached to drips, monitors and has tubes in her bladder and neck.

Over the next few days Kirsty has lots of visitors including her little mate Jack, unfortunately Kirsty was not very well at the time (the doctor was called for) and everyone was told to go the other side of the curtain. Jack got upset when he saw her, which then upset his mum (Jan) and my self, we all had a big hug telling Jack that Kirsty would be ok.

Surgery planned for Thursday. But Kirsty’s been getting a very high temp’ and being very sick over the past few days. I was finding this really hard to see her in so much pain and not being able to help her.

Thursday, day of 2nd operation
Kirsty is still no better so Mr. Oxborrow say’s he wants some urgent blood test and urine test doing before the op’ goes ahead.

Operation cancelled, Kirsty has an infection so is put on antibiotics. Mr Oxborrow tells Kirsty that he will not be doing the op’ but another surgeon will do it for her, she was not happy about this and told Mr Oxborrow that she only wanted him to do it and that she trusted him. Mr. Oxborrow kindly cancelled his other plans and promised Kirsty that he would come in and do it for her (he really is a nice guy). Mr. Oxborrow now plans to do op’ on Monday. The tubes are taken out of Kirsty’s neck (hope this will make her feel more comfortable). Over the next few days Kirsty still continues being very sick and looks to be getting no better. She is still unable to move or sit up and a new tumour has been found in her leg, Clair (one of the nurse’s) calls the doctor on call who then calls for a second opinion, none are sure what it is. Next day Mr. Oxborrow arranges an urgent ultra sound scan, Kirsty is wheeled down on her bed, results show the tumour to be very big with some smaller tumours around it.  Over the next few days the tumour is kept an eye on.  Kirsty, has lots of visitors over the next few days including Julie (Haley) out of Corrie’ and her husband (Ian) and there young child (Martha), they have everyone laughing on the ward. Some friends from school also visit.

Julie and Ian visit Kirsty

Just some of the cards Kirsty
received while in hospital,
sorry not a very good picture. 

Monday and time to try again
Mr. Oxborrow comes in early to see how Kirsty has been over night, takes her temp’, he is happy with things and tells her he will see her later. A few hours later Kirsty is taken to theatre, Mr. Oxborrow meets her and ask how she is feeling, he decides to take her temp’ again (he was not happy with the way she was looking). Guess what? The temp’ was up so he sends her back to the ward (results show she still has an infection). Over the next few days her temp’ is done every two hours and the results reported back to Mr. Oxborrow. Op’ now planed for Thursday.

Thursday 24th March 2005 
This time operation goes ahead after spending 15 days on her back, Kirsty goes down for surgery.  Next operation begins and so does the long wait for it to be over. After six hours we ask Louise (one of the nurses) to ring and find out how things are going.  We are told the op’ is going well but is going to take longer than they thought. Two hours later and we are told it is all over and that kirsty is in recovery, we both go down to see her before she is taken to H.D.U.  Her face looks a little swollen but she is comfortable. We stay till late and then I go to the parent’s room and John makes his way home. The next day Kirsty is still being very sick and in some pain, which is understandable with all she’s been through.  Mr. Oxborrow and Tarek calls to see her and say how pleased they are with how things have gone. The op’ was very difficult due to the amount of tumours on and in the spine but he hopes the rods will hold the spine but if not Kirsty will have to have the operation done again down the front.

I decide to go and let the nurses and her friends on her ward know how things have gone, I am told Danny Young (Warren from Corrie’) and Nikki are in the hospital, Kirsty really loves Danny and has many posters of him up on her wall. I was talking with some friends on the corridor of the hospital when Danny came up to me and said “hello Babe” (I could not believe it). I told him about Kirsty being on H.D.U and how poorly she had been.  Danny went to see her and what a nice guy, he was very upset when he saw Kirsty and one of the nurses (Lesley) heard that Danny had gone to see Kirsty and she came running up to H.D.U to see her face. Kirsty really was not very well at the time (as you will see by the pictures), her face is swollen and she is in a lot of pain. But that did not matter, Danny was a really nice guy and he really made Kirsty’s day.

Mr. Oxborrow calls to tell us what he had done.
He said that he had inserted 2 titanium rods down either side of Kirsty’s spine and screws and hooks hold the rods to the spine. They extracted the sacks of fluid that everyone has between each vertebrae and they fused each vertebrae together to make her spine solid, they also used bone from pelvis. No tumours were removed, as it was too dangerous to touch any of them.

A few days later and back on the ward
Kirsty is still in a lot of Pain and being very sick. Mr. Oxborrow is getting concerned at the amount of weight she has lost (over a stone), he talks about putting a feeding tube in but decides to get the dietician in to see her who is also concerned and puts her on Scandishake drinks to see if this will help.

30th March 2005
Kirsty has not been very well over the last few days and it’s looking a so she will be spending her Birthday in hospital.  Kirsty is fitted for her new body brace today and this is very painful for her due to it being the first time she has sat up. She is told the brace will be ready for the 5th April (her birthday), what a great birthday present.

Over the next few days Kirsty is in a lot of pain and still being very sick.

5th April 2005 and Kirsty’s 15th Birthday:
Kirsty’s 15th Birthday and as I expected Kirsty is still in hospital and still not very well but she’s still got that lovely smile and trying hard to stay cheerful.  The day starts off with Kirsty opening all her cards and gifts, which have been sent to her by family, friends and post pal, Claire arrives with kirsty’s new body brace all wrapped up in a big bow, which set the ward off into a fit of laughter. After dinner kirsty has a surprise visit from Julie and Ian (Haley out of Corrie’ and her husband) who both jumped into the ward singing happy birthday, while Julie and Ian were visiting kirsty the nurse’s wheeled in this great big cake with more gifts from the children and nurse’s on the ward, everyone sang happy birthday and shared in the cake, which was so big the whole ward could have a slice. The doctors call to see kirsty and sing to her. Kirsty had a great day but is very tired and became unwell during the night again.

7th April 2005:
Kirsty was allowed home this evening only to be readmitted with sickness and high temperature. Kirsty goes home again on the Sunday with some new tablets to try and help with this sickness and is due to see
Mr Oxborrow on Friday.

Friday 15th April 2005:
Kirsty was feeling very unwell on our journey to the hospital, I am finding it really hard watching kirsty keep being so sick and not knowing what I can do to help her. By the time we get to the hospital she is looking dreadful,
Mr. Oxborrow sees kirsty straight away and he too was concerned and decides to contact the medical team to have a look at kirsty, kirsty starts being very sick and is kept in hospital, she’s lost so much weight, about two stone and she is only very thin to begin with.

What I thought would only be a day a so turned out to be seven weeks, I slept on a chair next to kirsty’s bed I was so frightened to leave her. Kirsty is put on an Intravenous Drip and bloods taken. Over the next seven weeks Kirsty still continues to be very sick and a number of tests are done to try and get to the bottom of why Kirsty is still being so sick. They start with an ultra sound scan of the tummy and doctors were then advised that she should have a gastroscopy. I’m called to the theatre about an hour later where the doctor tells me that Kirsty’s stomach lining is very badly inflamed and that her food was not moving out of the stomach very well, he also took a tiny biopsies (samples of tissue) from her stomach during the test, he advised that she should start on these new tablets and that he would see her later. Kirsty was moved to another ward over night because she was really unwell and they would be able to keep an eye on her better. During the night Kirsty’s condition got worse and the doctor was called for, he sits with her for a while to monitor her condition and decides to put her back on a drip. It’s now the early hours of the morning and the nurse tells me to jump on the empty bed next to Kirsty (this is my first time sleeping on a bed in weeks), but it’s not long before Kirsty is being really sick again. Later in the evening Kirsty is moved back to her ward, the nurse felt she was to unwell to be moved off her bed so they wheeled her over the car park on her bed.

The following week doctor’s decide to do a PH Study on Kirsty, the PH Study was to measures the acid that refluxes from her stomach, a very thin tube was inserted up her nostril, until it reached just above her stomach where it stayed for 24 hours, this really made Kirsty heave, she had tears rolling down her cheeks, all I could do was hold her hand and do my best to comfort her, I so much wanted to be able to do more for her. The results of the PH Study were good, which was good news.

Brain Scan:
Doctors decide a brain scan should be done to make sure that the tumour on her brain stem had not grown. The results shown little change in the size of the tumour from her last scan three years ago, so in away that was good news. 

Kirsty is now on two lots of intravenous anti-sickness drugs, painkillers, and stomach tablets and at last the sickness is beginning to stop although she still feels very sick.

June 2005:
Well, we are now into June and I am beginning to see a light at the end of tunnel, Kirsty is able to do some physio’ over at the gym and she’s also managed to keep food down. I am still very concerned that she losing weight and doctors tell me that she may need to have a nasal-gastro tube inserted in order to get some extra feed into her stomach but first they decide to try putting Polycal into her food and drinks. Polycal is used for special medical purposes and for dietary management, they want to try and get her to twenty scoops of Polycal a day. Kirsty is also still on the Scandishake mix or Kirsty’s nickname for them is scanky-shake.

Doctor’s decide that Kirsty could go home for a few hours today to see how she gets on and things went well, Kirsty still felt very sick and we returned to the hospital early but it was so good to be in my own home even if it was just a couple of hours.

Over the next week Kirsty was allowed to sleep at home over night, which was great. Kirsty does some work on her web page by getting back to people and thanking them for all they have done, she did go on in the hospital for the people who needed help and advice but soon got very tired and while at home she managed a good half hour at the pc.

Back at the hospital:
Kirsty has a blood test done today and the results show Kirsty is slightly anaemic and this was to be repeated later in the week.

7th June 2005:
Doctors call for a meeting to discuss when Kirsty can go home, Kirsty is so desperate to go home and she has promised to do something for Wish Upon A Star and Kirsty being the true star she is she will not want to let them down. 

9th June 2005:
Kirsty can go home on the understanding she takes things easy and continues with her Polycal, Scandishake and all other medication.

12th November 2005
Kirsty is still not 100% and still keeps being very sick and in a lot of pain, she is back in school even thou she attends hospital weekly and some times twice a week.

I am still finding it hard seeing her in so much pain and not being able to help her, all I can do is sit with her and try and comfort her.

The doctor at Sheffield children's wants Kirsty to try this new tablet, which Kirsty is a little worried at taking due to the side affects, I also don’t like the idea of saying she must take them just in case it does have a bad affect on her. I can only hope she is ok on them.

Kirsty has been in so much pain in her back and leg and she is waiting to have surgery on her leg where the doctor will remove three tumours, which are deep in the leg. Her physio’ in the hydro’ pool will continue for a while yet as she is still not very strong.

What makes me so proud of Kirsty is even thou she is in a lot of pain she is determined to raise £5000.00 before Christmas for the charity When You Wish Upon A Star and I’m sure she will do.

Pride of Manchester Award

Chris, (her brother) put Kirsty forward for the Pride of Manchester Award and she is in the finals we find out in January 2006 if she is one of the winners, see link

http://www.manchesteronline.co.uk/men/news/s/176/176067_kirsty_makes_a_net_difference_.html   

She has had some lovely comments left by people wishing her luck, have a read if you get time.

12th January 2006
We are really proud to announce that Kirsty was voted the overall winner of the Pride of Manchester, her prize being £3000.00 for charity, which will go to When You Wish Upon A Star and a glass trophy with her name engraved on it. There were eight finalist and each one had a remarkable story to tell, each and everyone do Manchester proud.

9th February 2006
Kirsty had to go for a Brain and full Spinal MRI Scan today due to her having persistent nausea, headaches and dizziness and more recently the loss of balance. Mr. Oxborrow is concerned that one of the tumours may have started to grow. This is the problem faced with NF it can be a very cruel condition and nobody can say what will happen next. We are just very lucky that Kirsty is good about everything and does not let it get her down.

7th March 2006
Good News. We received a letter from Mr Oxborrow today, which read the results of Kirsty’s MR Scan on her brain and spinal cord show nothing more than the neurofibromatosis, which they knew about already, so he is not sure what is causing this persistent nausea, headaches and dizziness.  Not sure what happens next, it’s so hard to see your child feeling so ruff but I am pleased to say the Gabapentin tablets that she is now on for her pain does seems to be working at last and she's not needed as many of her other pain killing tablets.

Kirsty is due to go back into hospital on the 29th March '06 to have three tumours removed from inside her leg, we will update after this time to let you know how things go. She is keeping very busy with her fund raising at the moment.

22nd March 2006
We have just received a letter from Mr. Thorn saying he's looked at the scans that Kirsty had a few weeks ago and he would like to have a chat with us, which should of been next Wednesday but Kirsty will be in hospital having an operation on her leg so we have now made a new appointment for the 12th April '06. We will update after Kirsty's had her surgery.

1st April 2006
Operation over, Kirsty was only in hospital a couple of days this time but she is in a lot of pain and finding it very difficult to get around at the moment, which is only to be expected after having three tumours removed from inside her leg. Kirsty goes back to the hospital on the 5th April ’06 (her Birthday) to have the stitches removed, something she is not looking forward too. I will up date after we have seen the doctor.

14th April 2006
Well, we have been to see Mr Thorn and yet again we leave confused and not really sure what is going on as Mr Thorn tells us that he thinks Kirsty may have NF1 and NF2, I did not think that was possible but I am told it is very rare and there are only very few known cases in the world. I really think I am going to get some genetic testing done because at the moment I am out of mind with worry. I mentioned to Mr Thorn that this was mentioned last year when Kirsty was in hospital that she may have NF2 as well as NF1 and it was suggested some more test were done but in the end none were carried out, he tells me that some of the tumours on her spine are characteristic to NF2 tumours and that Kirsty’s got at least one tumour on every nerve in and on her spine, I think you can imagine how we are feeling at the moment. My next step will be to have a word with our family doctor to ask for the test that should have been done last year when she was in hospital.  

20th May 2006
I received a letter today from Kirsty's NF doctor in which she says. In a small proportion of patients with NF they develop spinal root tumours that clinically and on scans look very similar to those they see in NF 2- they can only separate them when they are removed because in NF2 they are schwannomas under the microscope and n NF1 neurofibromas. The doctor goes on to say she can completely understand our anxiety and has written to Mr Thorn to ask him to consider doing an up to date head scan on Kirsty. The NF doctor also wants to discuss the issue and consider NF2 gene testing.

Kirsty was also measured for her new back brace yesterday and is being so good about everything, she is a really great kid that is always thinking of how she can help others. We are so proud of her. 

16th June 2006
Kirsty’s school Prom. The afternoon started by Kirsty having her hair and makeup done by Gillian (Gillian does for the Corrie’ stars) and even if I say so my self she looked like a princess and I had tears in my eyes. Our little girl looked so grown up.

23rd June 2006
Kirsty went for her new back brace today and when we got home we 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 Kirsty injuring her spine and neck (you can read more about this on Kirsty’s page). All I can say I’m glad Kirsty had her new back brace on.

1st July 2006
We are off to swim with the dolphins in Florida, which an ultimate dream of Kirsty’s that came true after the When You Wish Upon A Star team granted her wish.

The experience was amazing and something we will never forget. To swim alongside these magical creatures and to watch that smile on Kirsty’s face you could see the love in her eyes (read more about this on Kirsty’s Page).

20th July 2006
Kirsty is undergoing test at the moment to see if she has both NF1 and NF2 and recently had blood test at St Mary’s Hospital, which will take three months before we get the results back. She’s also had brain scan yesterday, just waiting on the results now.

27th July 2006
Went to Sheffield Children’s to see Susanne Davis today Kirsty was given a V.TENS PLUS to use for the pain and her Gabapentin was increased.

28TH July 2006
Went to Pendlebury Children’s Hospital today for a check-up on her spine. We saw Mr Oxborrow. Kirsty had been telling me that her back was hurting her and that she was in pain with it. But when I looked at her back everything was looking ok, I feel really bad now as Mr Oxborrow sent Kirsty for an x-ray and unfortunately he told us that her back had gone worse. I could of cried, I kept asking my self why could I not see it? Mr Oxborrow also told us that she had some new tumours on her spine. He mentioned further surgery in which he would place rods all the way to the top of her spine but Kirsty was not keen for him to do this at the moment, as there is 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 now wants Kirsty to have a bone scan and he is going to have a chat with the neurosurgeon to see what would be the best steps to take now.

He was unsure if it would be safe for her to use the TEN’s and wants me to phone Mr Thorn for advice. 

11th October 2006
Kirsty has been getting very breathless recently so I took her to see our family G.P as I was getting worried, Kirsty was sent to have chest X-ray.

18th October : X-ray results:
The radiologists report mentioned that he could see a tumour coming out of the top of Kirsty’s right lung. This is so hard for me to take in, yet Kirsty just takes it all in her stride; she’s such a great kid.  I have got to take Kirsty to see a chest specialist next week for more tests.

Kirsty as also got to have an ultrasound scan of her kidneys as she’s been getting a lot of pain in her back, ribs and sides This is to make sure that Kirsty does not have any tumours on her kidney.

Kirsty still continues to attend hospital weekly, I just wish I could do something to take her pain away as any mother would do.

24th November 2006
Not much change really, Kirsty's had so many new tumours developed in her body over the past few weeks and it's hard seeing her in so much pain and not being able to help her. 

Kirsty is waiting to have a lung function test done. The Lung function tests will help determine the cause of Kirsty’s shortness of breath and other breathing difficulties that’s she been having. She is also waiting on an urgent appointment to see another specialist over the tumours found around her kidney area.  

21st January 2007
Kirsty continues to amaze us with her strength and determination not to let things get her down.

The lung function test came back with some abnormalities and need to be looked at by a specialist who will then contact us with what happens next.

When Kirsty saw Dr Huson recently she mentioned to her about some new tumours that have grown and are very painful these will be removed by Mrs Brain who is the plastic surgeon. Dr Huson also felt it would be a good idea if Kirsty was to have a PET Scan, PET stands for Positron Emission Tomography.  This will help to find out more about how Kirsty’s condition is developing. It can also be used to measure how well treatment for a condition is working.

26th January 2007
I found things really hard yesterday, Kirsty was in so much pain and I could not do a thing to help her. She needed the colonoscopy test doing due to the bleeding she had been getting from the anus and the pain that she had been getting in her tummy.

Kirsty was crying with the pain that she was in and I felt hopeless not being able to do anything for her. She’s now left with two black and blue arms from where the doctors tried to put the canula. I was able to bring Kirsty home at the night and the doctor said he would send a full report but everything looked ok, which was good news.

Took Kirsty to see Mr. Oxborrow today
Mr. Oxborrow was pleased with the x-ray results of Kirsty's spine and said the spine had not gone any worse. He was concerned about the newly diagnosed Drop Foot condition and has arranged an urgent scan of her pelvis and bottom of the spine as he is worried that Kirsty may have a tumour at the bottom of her spine now too.

He had spoken with Mr. Thorn who had told him that Kirsty does have multiple tumours all over her spine, which Mr Oxborrow was already aware of. It’s really hard trying to find away to control the pain that Kirsty is in.

We are now trying to get her a Spenco Spinal Mattress as her other spinal mattress is not really helping her get a good nights sleep.

Kirsty is still attending hospital weekly and continues to be very good about it all, which is helping us as parents at the moment.

26th March 2007
Finding things very difficult at the moment, I took Kirsty for the results of her scan on Friday and unfortunately she now has a cluster of new tumours at the bottom of her spine, one of which is over what they call the cut off point. Mr Oxborrow (Kirsty’s spinal Doctor) was also concerned that the tumour in Kirsty’s neck is growing so fast and was also concerned about the one in her lung.

Mr. Oxborrow phoned this other doctor to tell her about Kirsty and I have got to take Kirsty back to the hospital this week when she has seen kirsty’s scans and reports.

What amazes me, Kirsty just takes it all in and is so strong. But as any parent knows it’s hard seeing your child undergoing painful treatment, how many of you have said “I wish I could have it for you”? I know have, many times.

10th April 2007
Last week I received a letter from Christies Hospital for Kirsty to go for a PET Scan, I was asked to phone the department to confirm Kirsty would be attending on doing so I was told the scan had been cancelled and told to phone the doctor who had arranged the scan. I was really upset as Kirsty had been in a lot of pain and getting pains in her chest.

I phoned the doctor to ask why it had been cancelled and was told that Dr Brennan is going to see Kirsty as soon as she has reviewed all the scans etc and she feels that to do the PET scan before that may complicate things further. Also that all the Doctors involved in Kristy’s care need to liaise (Mr. Oxbarrow, Mr. Thorne, Dr Barber, Dr Brennan and Dr Huson.) and that she realizes this is a worrying time but the kind of neurofibromas Kirsty gets always cause more pain than the ones on the skin.

I am finding it difficult to see Kirsty in so much pain and not being able to help her, it’s not like Kirsty to complain of pain, so I know she must be in a lot of pain to complain about it.

Mr. N Oxborrow as been really good and when Kirsty suddenly developed foot drop he took steps to find out why, which is when we found out that Kirsty has a number of new tumours on the bottom of her spine, one of which is above 3cm.

I really don’t know how long I can just sit back for, this is my child and like any parent I love her more than words can say.

Neurofibromatosis can be a very cruel condition and affects everyone different and although Kirsty looks great, inside her body has so many tumours that give her so much pain. But unlike many of us adults who sit back and feel sorry for ourselves, Kirsty is always thinking about how she can help other poorly children. She is a great kid and I love her more than words can say and I know we will get over this next hurdle together.

Kirsty Celebrated her birthday on the 5th April and I would like to say a BIG thank you to: Our son (Chris), family, friends: Julie, Kersh, Martha, Paddy, Paul, Colin, Hospital Staff at Wythenshawe Hospital and Post Pal for making Kirsty’s Birthday extra special. Kirsty really enjoyed her day.

19th April 2007
Unfortunately the hospital did not go so well for Kirsty today, Mr Thorn put the scans up for Kirsty to have a look at and told us that she has at least one tumour on every nerve that is coming out from the spine some of which are above 4cm. He also thinks that she may be starting with foot drop in the other leg too and will need a foot brace for her other leg soon. I asked about him 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 anyway.

He wants Kirsty to have a lung scan and if the tumour in her lung has grown then that will have to be removed.

I was very up set by the news  as she is going to have a life of pain and nothing can be done at the moment to help.

I have just spent the last two hours cleaning my kitchen to try and take my mind off things. I really don't know what I can do to help, my husband and I cannot understand why the doctor is letting the tumours get so big when Kirsty is in so much pain.

Mr. N Oxborrow (Kirsty's spinal doctor) as been fantastic with Kirsty and we have got a lot to thank him for. The operation he did on Kirsty's spine when he inserted the rods is looking good and if you are reading this Mr Oxborrow "thank you" for all you have done to help Kirsty.

15th June 2007
We are finding things really hard at the moment as Kirsty is to go into hospital for more surgery and we have been told that she may also need surgery on her lung.

We have had problems trying to get the correct electric bed for Kirsty as her room is only small, they do do beds to fit but because the OT's ordered the wrong size bed it caused so many problems then we were told that we would have to pay £1500.00 towards the bed that Kirsty had been prescribed by her doctor. As many of you will know seeing our children in so much pain is difficult and at the moment I cannot see any light at the end of tunnel.

July 2007
Well, I am pleased to say after my son got on to the boss of the OT's and explained everything, Kirsty now has her electric bed and we did not have to pay anything towards it.

31st July 2007
It was great news from the hospital this morning, Kirsty will not need surgery on her lung at the moment as her lungs were looking good today when he x-rayed them and he thinks by doing surgery it would cause more problems for Kirsty. However, he does want Kirsty to have physio' on her lungs to help with the breathing as her breathing is still not what it should be. But being a parent I would rather Kirsty go to hospital twice a week than have to have surgery on her lungs.

We are still waiting on a date for surgery on Kirsty's neck, tummy and arm, which should be in August sometime but hopefully Kirsty will not be in hospital very long.

Kirsty managed to pass her theory driving test last week after only getting one question wrong "WELL DONE Kirsty" I am so proud of you. Now for the driving lessons.

12th September 2007
The results of Kirsty’s nerve conduction test and pelvic scan results were not what we hoped for. Unfortunately the nerve conduction test showed that Kirsty does have damage to her major nerves that work her legs and feet, which is why she developed the foot drop in both feet and pelvic scan showed that Kirsty has tumours all round and on the major nerves in the pelvis. After chatting with Kirsty’s NF doctor it was decided that Kirsty should now have a PET Scan, depending on the results from the PET scan Kirsty may have to go and see a doctor London. The good news was the foot drop in both her feet had not got any worse, which was great news.

Kirsty took the news well. But as any parent will understand it’s so hard watching your child keep having to have all these test, maybe one day they will find a cure for NF.

4th January 2008
Well, it's the start of a New Year and for Kirsty it starts with more hospital visits. The P.E.T scan that Kirsty had is to be repeated as the doctor who did the scan said it was a cold on the day that Kirsty had scan and he wants to use the last scan as a base line scan and compare the two.

We have also just found out that Kirsty's now got Nf tumours in her tummy, they are not very big. but the size of these tumours do not make any difference, it can be the smallest of the tumours that is giving her all the pain, we will have to wait and see what the doctor decides to do next.

6th February 2008
Kirsty is having an M.R.I scan of both her knees on Friday has her knees keep giving way. I took Kirsty to see an orthopaedic doctor at Pendlebury two weeks ago and he was concerned that both Kirsty's knee caps were loose and that she had swelling to the back of her knees so he wanted her to have a scan to see what was going on.

TV interview
We are off to London Thursday to do a live interview for channel 5, they want to talk to Kirsty about her NF and fund raising, it's only just over a week off her big charity Valentine Ball.

18th July 2008
So much has happened over the past few month I don't know where to start. OK, let's think.
the TV interview that Kirsty did for Channel 5 went really well, we were only in the studio for about an hour.
The Manchester Evening News were asking there readers to nominate someone for the Manchester Hero Award and must say I was shocked when we received a call from the M.E.N to say that they had received lots of letter's from members of the public nominating Kirsty for the award, not that she doesn't deserve the award she does but it was nice to know so many members of the public thought so too.
Kirsty was voted one of the 25 winner's and won £1000.00, which she going to use on the book that she is writing.

Kirsty Valentine Ball went really well and she raised £23.000.00, which means she has now reached her target of £65.000.00 and will be paying to send 100 very poorly children and a parent to Lapland in December to meet the real Santa. But she is not going to stop there, she is now trying to raise a further £60.000,00 so that she can send 30 poorly children and their families on a five day holiday to Centre Parc's. if you think you can help Kirsty raise this money please make a donation on her just giving link it is very safe to make a donation in this way, or maybe you would like to buy some pin badges for your friends and family every little helps, they only cost £1.00, if you go to the new link on Kirsty's front page you can view what the pin badges look like.

I have been keeping a big secret from Kirsty, which I found really hard to do. I received a call to tell me that Kirsty had won the Huggable Hero Award for the UK and that both Kirtsy and I would be flying out to Washington DC for 3 days. where Kirsty would meet the other eleven Hero's from around the Glob and take part in a Photo Shoot for the Build a Bear 2009 calendar (look out for the calendar in your Build a Bear shop around November). Kirsty will also receive some money for her charity and money to help her at University when she starts.
Kirsty was voted a Huggable Hero by the Build-A-Bear Workshop the organisation based in the United States, which gives back to the community through the Huggable Heroes program.  The program recognises young people who make a difference through community involvement.  Kirsty was nominated for her award because of her work within the community.

We had to take Kirsty to the Build a Bear work shop in the Trafford Centre where she was surprised told she had won the award, she was in total shock, channel M filmed it all and she was on the local news that night.

Kirsty is still in a lot of pain and attending hospital weekly, I always go with her and keep her company. I just wish something could be done to stop these tumours from coming. NF is a very cruel condition. It's a good job we have a lot of support from all Kirsty's doctor's. Mr. Oxborrow (Kirsty's spinal doctor) is very good and never takes things for chance. We also have a very good GP (Dr. Smyrniou) and our NF doctor (Dr. Huson) is very good too.

15th October 2008:
Since the last time I wrote things have worsened for Kirsty and after chatting with our NF doctor it as been decided that Kirsty should see a doctor in London to chat about what can be done to help Kirsty, depending on what this doctor says we may have to take a trip over to the USA  to see a doctor. In the meantime Kirsty is going into hospital for more surgery before Christmas to have three tumours removed, which are giving her some pain, the doctor said these tumours can be removed safely. She is also waiting to have echocardiogram as she is still getting very breathless.

Kirsty's dream is to raise as much money as she can for other poorly children and to have her book published, if you can help me make her dream come true I would be very grateful.

I find it really hard watching my daughter in so much pain and wish everyday that I could do something more to help her, she's the best daughter anyone could wish for and I love her more than words can say.

Can I say "Thank You" to everyone who takes the time to sign Kirsty's guest book, she loves reading your messages and also loves helping those of you who ask for help and advice too.

14th October 2009: Since I last updated lots of things have happened most of what you can read on Kirsty 2008/2009 link. Kirsty’s had more surgery to have tumours removed and was rushed into hospital very poorly due to sickness, she spent many weeks in hospital and after having a number of test Kirsty was told that she now has a severe stomach emptying problem, the tumours in her tummy are not helping the situation and she still continues to be sick every day after having any fluid. Doctors are saying she may have to have her stomach removed. But if it comes to that we will ask for a second opinion first. Kirsty is back in her back brace due to the pain in her back, Mr. Oxborrow, Kirsty’s spinal doctor asked Kirsty if she would consider more spinal surgery. This op’ would come with many risks and it’s something Kirsty really needs to think about. She recently had a MRI scan of her spine so Mr. Oxborrow can see how bad Kirsty’s spine is, but even having the scan came with its problems for Kirsty and the scan had to be stopped as they could not manage to find a vein to inject the contrast dye, we are now waiting to find out what will happen now. Kirsty knees have worsened too and when the doctor showed me the scans the other week I’m not kidding you but it looked like she had a bunch of grapes in both her knees. The doctor wanted to do surgery on both Kirsty’s knees but she asked if he could try something else first, so he agreed to try intensive physio’ for eight weeks. Kirsty was nominated for the Rotary Award by the Didsbury Rotary club and I was pleased to be told that she had won, the awards was filmed on TV News back in April. The film crew had to come and do some of the filming while Kirsty was in hospital as she was too poorly to come home. We were also invited to Glasgow for the weekend and Kirsty met with boys from McFly, which really made her day. Kirsty started University this term and is studying TV and Radio Media and is working on finding a career that will allow her to work at her own pace. She cannot sit, stand or walk for long periods at a time. I am not able to stand, sit or walk for long myself and understand how difficult it is for Kirsty. Neurofibromatosis may have stolen some of Kirsty’s physical capabilities, but she still has her mind, and everything that she’s learned in her educational career. The reason I am telling you this, is because you may have just learned that you or a member of your family has neurofibromatosis. You may only have a few minor signs—perhaps just some brown patches on your skin—or you may have been living with more serious complications. Neurofibromatosis can affect the body in many ways, and it can affect different people in very different ways. In some it may be nothing more than a nuisance, but in others it can cause important medical problems. Kirsty still attends hospital weekly, is facing the prospects of having her stomach removed, knee surgery and more spinal surgery. I wish everyday that I could take away Kirsty’s pain and upsets me to think that Kirsty inherited the condition from me, yes, I cry about it, what parent wouldn’t, she’s my daughter and love her with all my heart. Kirsty’s now got a car, which helps her be more independent. But I worry about her being in the car too. She is still busy with her fund raising and is having a spookathon in November to raise money for when you wish upon a star, she wants to raise a further £80.000 so that she can send 30/40 poorly children on a five day holiday with their families to Centre Parc’s. I know with her determination she will reach her target. Kirsty also hopes to have her book published which is now finished and tells her story to date on living with NF. If you would like more information on how you can support Kirsty with her fund raising please send her an email and she will get back to you. 9th February 2010: Kirsty had some bad cards dealt her last year and spent many weeks in and out of hospital due to sickness as well as attending weekly hospital appointments. For all Kirsty goes through she is a true inspiration to everyone. She may have Neurofibromatosis but that doesn't stop her from striving everyday and touching everyone’s life in the process. If Kirsty can help just one person she will. Living with an illness can be extremely stressful at any age, especially when you don’t know what to expect. Before we take our daughter Kirsty to her NF appointments we think about questions we should ask. Afterwards we wonder if we asked the correct questions, and did we ask everything we should have asked. Our journey is far from over in the world of NF, as with any of the other conditions we live with..... We have just been learning to take one day at a time. Kirsty refuses to let her condition hamper her ambition to be a TV or Radio presenter and tries to juggle her many hospital visits around her study’s, while at the same time as keeping up with her fundraising and helping people who contact her via her web site. We are very proud parents. 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 Kirsty or me and we will both do what we can to help.

Will update when we know more. 

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