C/O 32 Tramore Walk
Manchester
M22 5QW
United Kingdom

NB: this is a forwarding address for the Pal, we do NOT disclose home addresses

Email Pal

Kirsty A's Parents/Guardians

Julie

Kirsty A's Siblings

Kirsty A's Interests

Doing Drama, Football, Computer games, Playstation 2, Nintendo DS, raising money for other poorly children, doing T.V. work, modelling, going out with friends, doesn't like hard books and enjoys making things.

Kirsty A's Favourite Colour

Dark Blue

Is Kirsty A able to read?

Yes

Is Kirsty A able to use hands?

Yes

Is Kirsty A visually/hearing impaired?

No

Does Kirsty A suffer from any developmental delay?

No

Story written 2005

Kirsty was diagnosed with Neurofibromatosis when she was just eleven weeks old, but was not diagnosed with Scoliosis until she was 8 years old. Scans of the spine showed that Kirsty had a number of tumours on and in the spine itself at the lumbar junction extending well into the sacrum. In March 2000 Kirsty's spine had curved a further 9 degrees. Doctors decided it was time to try a Boston brace, which she had to wear 23 hours a day. The brace is made out of a very hard plastic, which goes from the top of the chest to below the hips. Doctors told her it would take her 8-10 weeks to get used to wearing the brace for 23 hours but within 3 days she was doing just that - wearing it 23 hours a day. The doctors were really pleased with her.

Kirsty has now been in a brace for 6 years. One of the tumours has started to grow and she has been in a lot of pain. After getting a second opinion doctors decided it was too dangerous to touch any of the tumours and that the risk of paralysis was too high.

Kirsty decided to build a web page to help others which is www.kirstysstory.co.uk. She is always thinking of others.

She will be going into hospital on the 10th of March 05 for a big op’ on her spine. Kirsty had 3 tumours removed last year, there is no way of stopping the tumours from coming or growing and there is no cure for the Neurofibromatosis (NF)

Update 30th April 2008

Things are still very much the same with Kirsty and April was a very busy month for her with hospital visits and the surgery that she needed. The operation went well and after spending a couple of days in hospital and two weeks at home recovering, she is now back at college.

Kirsty’s spinal doctor is not sure if one of the screws has split at the top of her spine and this is to be looked into. More tumours have been found in both her knees and she must continue to wear braces on both knees now. Having surgery at this point will only make things worse for her. The doctor wants Kirsty to have her PET scan repeated in June and if there is any change to the tumours we are looking at more surgery.

She still has to attend the hospital weekly and the doctor said that this will continue for a long time yet.

Kirsty was nominated for an award by a member of the public and was recently in the press. She finds out in June if she is one of the winners. She is also up for another award and if she wins she is going to Washington DC for four days to represent the UK.

Thank you to Becky Butler, Kate Dee, Mrs Ball, Julie Barrett, Susanna Wild, Kyle & Erin, Crafting cards forum, Kathleen Brewer and Artist Trading Cards. I received some lovely teddies from Susanna, I love my teddies and even more so when they do something. I also received three lovely balloons from Kate Dee, which incidentally are still going strong. I received so many lovely gifts for my birthday and I would like to thank each and every one of you for taking the time to think of me. It’s been a difficult month with hospital and you have all made the days so much more fun.

Update 31st March 2008

Things are still very much the same with Kirsty. We have got a busy time with hospital visits these next two weeks as Kirsty is going in to hospital on the 8^th April for surgery on her foot. She could do with some TLC over the next few weeks as we find out tomorrow if Kirsty will need surgery on both her knees and on Friday we find out if Kirsty will need more surgery on her spine. Kirsty went for her Pre’ Op’ check this morning and they said they are not sure how long she will be in hospital for yet but they are looking at a few days.

Can I ask if you will all keep your fingers crossed as Kirsty? She is taking her driving test on the 5^th April, which just happens to be her 18^th Birthday too. She wanted to take the test before she had the operation on her foot.

Thank you to all who took the time to send me a card, some of which had been hand made. They really made my day. Thank you to Becky for your lovely letter and thank you to Becky Butler, Kate Dee. Mrs Ball, Julie Barrett, and Susanna wild, I love hearing from you all.

Update 27th February 2008

Things are still very much the same with Kirsty, but she’s been very busy getting ready for her charity Ball, which was on the 16^th February. Kirsty had a lot of Television coverage, doing two live TV interviews and one pre recorded television interview along with lots of press coverage to do with the Ball that she had. Kirsty was pleased with how it went and managed to raise over £23,000 on the night. Over 200 guest attended, including boy band Eton Road, Julie (who plays Hayley in corrie’), Rowetta, Mersey beetles and Vince Miller.

Kirsty was really tired by the end of the night and it took her a few days to get over it. Even though Kirsty’s still got a lot going on and we still attend hospital every week, it’s not stopped her from smiling and getting on with life to the full.

Thank you to all who took the time to send me a card, some of which had been hand made. They really made my day. Thank you to Mrs Ball, Becky Butler and Nicole D for your lovely letters and thank you to Becky Butler for the tights that she sent, you were very kind to think of me.

Update 29th January 2008

Kirsty had to see the orthopaedic doctor last week as both her knee’s kept giving way. After the doctor had a good look at both Kirsty’s knees, he was concerned how loose both her kneecaps were and also about some swelling to the back of her knees. He wants Kirsty to have an MRI scan, which she having next week to see what is going on.

Kirsty has also had a lot of pain in her back and this has been getting worse over the past few days, but she will not let me do anything about it as she has got a big charity Valentine Ball in February that she is busy with. She is hoping to raise £65,000 so that she can pay for 100 terminally ill children to visit Santa in Lapland. Kirsty spent the afternoon with a TV crew on Sunday talking about her condition and charity work, which was on the local TV news last night.

Update 3rd January 2008

I received a call on my mobile the Friday after Christmas, it was 7pm and we were on our way to a party and had people in the car so I could not really talk. The doctor asked how Kirsty had been and she then said that she had received a call from the doctor who did the P.E.T scan on Kirsty and that he wanted to do it again. He thinks it may have given some false readings as the day Kirsty had the scan was a cold day and he thinks Kirsty should have it done again so that he can compare the two scans. I mentioned that Kirsty had been for a ultra sound scan of her tummy due to getting pain in her tummy and that they noticed Kirsty had lots of small tumours in her tummy. The doctor then said she knew about the tumours in the tummy as they had been seen on the P.E.T scan too. The doctor wants to see both Kirsty and me when she gets back in February to have a chat about things, so I will know more then.

In the meantime, Kirsty attends the children’s hospital this month over the problem with both her knees giving way on her. Even though Kirsty’s still got a lot going on and we still attend hospital every week, it’s not stopped her from smiling and getting on with life to the full.

Thank you to everyone who took the time to send me such nice gifts, they really helped make my day and reading your letters helped take my mind off some difficult times.

A big thank you to Nicole D (post Pal member), Becky Butler, Mrs Ball, Susanna Wild, Julie Barret and Santa Posty.

Update 29th November 2007

Kirsty had her PET scan and is now awaiting the results. I received a call from Kirsty’s doctor today who asked if I could bring Kirsty in to see her later in the day. When we arrived the doctor called us in and told us that she had received a letter from Kirsty’s physio’ who had been concerned at the amount of falls that Kirsty had been having. On looking at her knee, he felt that there was damage to the ligaments and a lot of swelling to the back of Kirsty’s knee which may be fluid. The physio’ wants her to have a MRI scan done of her knee so the doctor is asking for an orthopedic doctor to have a look and for now she must also wear a brace on both her knees.

Kirsty is to have a scan of her kidney in December to make sure she does not have any tumours on her kidney. They are also worried that she is losing weight.

We received a call asking for Kirsty to come in to hospital for the operation on her foot this week but Kirsty told them she did not want anymore operations before Christmas, as she is taking her driving test in December.

Even though Kirsty’s still got a lot going on and we still attend hospital every week, it’s not stopped her from smiling and getting on with life to the full.

From Kirsty: The team from Post Pals work so hard to put smiles on poorly children’s faces, it’s nice to see Post Pals growing each month with such brave kids. A big thank you to Nicole D (another Post Pal), Kate Dee, Becky Butler, Mrs Ball, Susanna Wild, and the wonderful people who sent me the beautiful quilt, which I have on my bed.

Update 30th October 2007

Kirsty’s not been so well recently and in a lot of pain. Doctors looked at Kirsty and think she may have a tumour on her kidney, so are arranging for her to have an ultrasound scan of her tummy.

The results of the tumours that were removed a few weeks back were not nasty, but the doctor looked at Kirsty’s foot and found a new tumour, which looks to be deep into the bone. She is to have more surgery in the New Year to have this removed as Kirsty is hoping to take her driving test before Christmas and they have said they will leave it until after her driving test.

Thank you to everyone who took the time to send me letters and postcards they really helped make my day and reading your letters helped take my mind off the many hospital visits that I have had. I have made lots of new friends due to Post Pals and it’s nice to see it growing each month. The team from Post Pals work so hard to put a smile on a poorly child’s face, it’s amazing what a knock on the door from the postman can do.

Update 29th September 2007

Kirsty is waiting for a PET scan after doctors found out from her last MRI scan that she now has a number of tumours in her pelvis. If the tumour show to be a grade 3 or above, she will have to see doctor in London and may need further surgery.

From Kirsty: Thank you to everyone who took the time to send me letters, gifts and postcards. They really helped make my day and reading your letters helped take my mind off the many hospital visits that I have had. I have made lots of new friends all over the world due to Post Pals and it has made a big difference to my life.

Update 12th September 2007

Kirsty went for her nerve conduction test and pelvic scan results today. Unfortunately, the nerve conduction test showed that she does have damage to the major nerves that work her legs and feet. This is why she developed the foot drop in both feet and the pelvic scan showed that Kirsty has tumours all around and on the major nerves in the pelvis, so it’s been decided that Kirsty should have a PET scan done. If any of the tumours show up as a grade 3 then it may mean a trip to a hospital in London. Kirsty took the news well, but could do with some TLC over the next few weeks.

The doctor was going to contact a doctor in the USA to tell them about Kirsty and see if she would be ok to take part in the drug trails, but she decided Kirsty should enjoy her time at college at the moment and see how things go with the PET scan.

Update 31st August 2007

Kirsty has just got out of hospital after having four tumours removed and she is doing well with pain control. Kirsty still has to attend hospital at least once a week, but this can be as much as four times in a week. Kirsty is still having problems with her breathing and after seeing the physio’ who commented on her breathing being very fast and there being a problem with her diaphragm not being used correctly, she is going to use a Mediflo Duo, which may help with her breathing. A Mediflo Duo is a dual use incentive spiro meter that can be used for both Sustained Maximal Inspiration (SMI) and Positive Expiratory Pressure (PEP). She has got to try and use this three times a day. Kirsty must also now wear a splint on both her legs/feet, which she’s just been measured for and they should be ready on the 26^th September. We will be going for the results of the recent scan she had on the 12^th September to find out if she will need more surgery or not.

Post Pals is a great website and has made a difference to my life and made my hospital stays much easier. I’d like to say thank you to Susanna, Becky, Ryan (post pal), Kate, Mrs Ball and any one else who takes the time to write to me and send me kind gifts. They have really helped to cheer me up. I do try and write back to everyone and I’m sorry if I have not got to you. Sometimes people don’t put their name and address on the letters or packages though.

Update 23rd August 2007

Just to let you know that we received a call this morning to say they are bringing Kirsty into hospital on Tuesday 28th August ready for her operation on Wednesday 29th August. We’re not sure how long she will be in for yet, but she could do with some extra TLC.

Update 12th August 2007

A big thank you for the teddies that Susanna form the USA sent to Kirsty. She had not been so well and in a lot of pain when she received this package and they really brightened up her day. Susanna, you are a star!

Update 30th July 2007

Things with Kirsty are very much the same - we still have to go to the hospital up to 3 times a week and tomorrow we find out if Kirsty will need surgery on her lung. We are also waiting on the date for her next surgery, which should be any day.

Thank you to everyone who took the time to send Kirsty letters, gifts and postcards. They really help make her day and reading your letters helps her take her mind off hospital visits.

Update 29th July 2007

Kirsty is doing ok at the moment. We find out on Tuesday if she will need surgery on her lung. We haven’t got the date for her other surgery yet, but we should be hearing very soon.

Update 27th June 2007

Things are no better for Kirsty health wise and she will be going into hospital for more surgery at the end of July or beginning of August. She now has foot drop in both feet and needs to wear a brace on both feet/legs. After having an urgent MRI scan of her spine she was found to have a new cluster of tumours at the bottom of her spine. The doctor then arranged for Kirsty to have a nerve conduction test and after the doctor got the results back from this test, he phoned and said that Kirsty needed an urgent MRI of her pelvic. We go for this tomorrow. Kirsty will also have her lung re x-rayed in July and if the tumour in her lung has grown any bigger, she will need to have part of her lung removed.

On a good note, Kirsty was named the student of the year at her college, won the wellchild award for bravery and is going to have lunch with Prince Harry and Prince William at the weekend.

She now also has her new electric bed after a long delay.

Post Pals has played a big part in Kirsty's life. She loves receiving post and has made lots of new friends due to post pals. Thanks this month go to Becky, Mrs Ball, Susanna, Kate Dee and Julie.

We tell everyone about post pals and have got many pals interested, so keep up the good work.

Update 27th March 2007

We got the results of Kirsty’s scan and unfortunately she now has a cluster of new tumours on the bottom of her spine, one of which is bigger than what they call the cut off point. The tumour in her neck is growing and causing some concern as is the tumour in her lung. The tumours that are on the bottom of her spine are what have caused the foot to drop. Kirsty's doctor phoned another doctor to tell her about kirsty and we have got to take Kirsty to see her sometime this week when the doctor is back in the hospital.

Update 1st March 2007

I had the urgent scan done of my lower spine, pelvic and hip area. This is because the doctor suspected that I may have a tumour on my peronel nerve, which has caused foot drop and the reason why I am in so much pain in my lower back and groin. I have also got to go back into hospital to have some tumours removed from my neck, breast and tummy area as these tumours have started to grow.

I have got a film crew coming down to spend a couple of days with me.

Update 21st December 2006

Kirsty had to go to hospital yesterday for physio' and have her weight checked. Unfortunately they are a little concerned because she’s now lost ½ St since September and must go back on the feeds. I have just been writing the appointments on the calendar for January and already Kirsty’s got 14 and that’s not counting all the extras that she will get during the month. She’s also got the lung function test and endoscope test to have in January. Hope you have a great Christmas and thank you again for all you have done for Kirsty.

Update 31st October 2006

Kay and i were at the hospital for over 5 hours, they were going to keep her in due to this tumour on her lung but decided she can go home on the understanding we go back to the hospital tomorrow. They also ran some urgent blood tests and it depends how the results come back tomorrow as to whether she is kept in or not. She's also got to have a lung function test done and may need a scan of her lung, which they are not keen on doing due to the rods in her back. Her kidney scan went ok but he said he would like her to have a MRI scan done on them. 

Kirsty's been asked about telling her story in a television documentary and will be in Best magazine around the 28th November.

Update 20th October 2006

Kirsty went for an urgent chest x-ray last Friday due to her getting shortness of breath. We went to see our family doctor today for the results, who told us the results of the x-ray showed that Kirsty has a tumour coming from the top of her right lung and must now go to the chest clinic as soon as we get back from London next week. They also think that she may have some on her kidney, she is still going to the hospital weekly and now more tests must be done to see what happens next.

Update 2nd October 2006

Kirsty’s back has got worse and the surgeon mentioned further surgery, which Kirsty was not happy to have. He also mentioned that some new tumours have grown on the spine and that he wants her to have a bone scan. He is also going to have a meeting with the neurosurgeon to have a talk over how bad kirsty’s spine is. He will talk to Kirsty again after he has spoken with the neurosurgeon and decide what is best to do.

Update 24th June 2006

Kirsty is still attending hospital weekly and on a recent dry land physio assessment, she was told that she also needs a brace on her foot/ankle and we are just waiting on it being fitted.

We see the doctor next week to talk about the possibility of her having both NF1 and NF2. Doctors have also decided that they want Kirsty to have another brain scan.

Kirsty also has her new back brace now, which she got on Friday and it is just as well, as Kirsty and I was both involved in a road traffic accident on a bus. We both had to go to hospital - we both suffered whiplash and are in a lot of pain at the moment. It was a good job Kirsty had her new back brace on, as her injuries could have been a lot worse.

Her weight is staying steady but she has to take the scandishakes everyday.

Thank you to everyone who wrote to wish Kirsty good luck with her exams, it’s been a very stressful time for Kirsty, but she’s great and copes well.

Update 16th May 2006

I still have to attend hospital weekly and sometimes more (everyday last week). I have to go back into the back brace and go for a fitting on Friday, I only have to wear it when the pain is really bad and tablets have not helped.

Some of my doctors think I may have both NF1 and NF2 this is because of the nerve that some of the tumours have grown on and how the tumours look. The doctor told my parents that I must have at least one tumour on every nerve on my spine, some of which are really big. They could operate but the risk of paralysis was very high and even more so after the problems I had last year. So, some tests are going to be done to make sure if I have NF2 as well as NF1 and if I do, there has only ever been about 4 known cases world wide.

Update 8th April 2006

A big thank you to Julie, Kate, Lee, Mrs Ball, Julie, Kersh, Martha, the children who sent me the paper quilt, Becky, Kate Dee, Alan, and Karen for the lovely cards and gifts and everyone who sent me so many e-mails on my birthday. You all really made my day and i will get round to thanking you all.

I am back at the hospital on Wednesday over the tumours on my spine, where i will be told what happens next, all i know at the moment is that this doctor i am seeing looked at the last lot of scans and now wants a word with my parents. I am still getting a lot of pain in the back and still have to attend the hospital every week.

I'm not allowed to do any exercise on my leg for the next three weeks due to the amount of stitches they have put inside the leg and i'm ok with that as i get everyone to bring me my tea and wait on me, which is pretty coooool...

Update 22nd March 2006

Kirsty’s operation is going ahead on Wednesday but they now want her in hospital the day before surgery as they may want to do some more tests beforehand i.e. scan, x-ray and blood test, plus the anaesthetist wants to see her and have a chat too.

She has still got this ear infection that’s not getting any better and she’s now been on four lots of different antibiotics to try and clear it up, but without any luck.

Kirsty is being really brave about everything again but I think she could do with lots of hugs being sent her way. I think Kirsty is being so brave as she doesn’t want to upset me, but I am really worried about this next operation she is having, things just don’t get any easier. We had a letter from a neuro’ surgeon this week saying he wanted to see Kirsty as he had looked at the spinal and brain scan that she had a few weeks ago and wanted to have a chat with us. She should have been going next Wednesday but she can’t with being in hospital,l so I have now had to make it for the 12th April. 

Kirsty just said to the doctor yesterday please don’t let me be in hospital for my birthday and they have promised to get her home in time to celebrate her birthday.

Update 12th March 2006

Kirsty is not so well at the moment and as a perforated ear drum, along with a chest infection and is back on antibiotics, the doctor is just hoping she will be ok for this operation at the end of March. She still has to go to the hospital every week and can't see an end to that just yet.

Update 11th February 2006 

Kirsty went for her brain and full spine scan on the 9th February ’06, which was really quick, we only waited just over a week. The doctor who arranged the scan is away until the middle of next week but we received a phone call from his secretary telling us that Kirsty’s doctor will phone us on his return with the results.

The doctor from Sheffield Children’s wants Kirsty to try some new tablets for the pain (Gabapentin), she is going to start them this week while she is off school because there can be some bad side affects with them and we want to keep an eye on her while she is on them.

The operation to remove the three tumours in Kirsty’s leg has been put back to the 29th March ’06, which is better for her as she will be on holiday from school from the 31st March for two weeks. Kirsty still continues to keep being sick and in a lot of pain in her back, we are hoping to get a new spinal mattress for her soon, which will her get a better nights kip.

Update 17th January 2006

We have been given a date for Kirsty going back into Hospital for the operation on her leg, which is the 28th February ’06. Unfortunately the three tumours in her leg have grown again and she is getting more and more pain when trying to walk. We are also back at hospital with her back on the 27th January ’06 to see how things are going with the back. Her physio and doctors at Sheffield want her to have a spinal mattress, which we are looking at trying to get at the moment but they are so expensive.

Kirsty is still being sick and lost some weight on her last weigh in, this is being kept an eye on and Kirsty will be weighed again next week. Hospital visits are still weekly and some times three times a week but Kirsty continues to be very good about it all, which help us cope with it too.

Update 12th January 2006

We are so proud of Kirsty and we wanted to share this news with you as Kirsty as just been named the Pride of Manchester, which made it all the more special with it going to a public vote. You can read more about this award by going on her web Page.

Update 4th January 2006

Kirsty was at Sheffield Children’s Hospital today for a review of her pain. Unfortunately Kirsty was very poorly on the way down to the hospital and kept being very sick. We were with the doctor for three hours, they decided to try a new tablet and some new relaxation exercises and they will see Kirsty again on the 8th Feb’ ’06. At the moment she is still in a lot of pain and it’s so hard to know what we can do to help her.

Update 1st January 2006

Happy New Year to all at Post Pals lets hope it will be a good one.

Update 27th December 2005

 

Well, you have all kept our postman very busy this year, I don’t think we had a day go by that Kirsty did not have a load of post including some beautiful cards from a school in Japan (Kirsty is busy writing back to them).

A big, big thank you to Kirsty’s Elf for all the lovely gifts she received she was kept busy throughout Christmas day opening all her gifts. Kirsty also had a lovely gift sent her from a lady (Kristen) in the USA whose daughter Ashley sadly passed away earlier in the year and who also suffered from Neurofibromatosis. You can read about Ashley on Kirsty’s web page. Kristen bought Kirsty an electric Bass Guitar with everything to go with it including headphones; Kirsty was in total shock when she opened this gift as she had always wanted a Bass Guitar and is now learning to play it.

Update 14th December 2005

Kirsty went for her physio today and unfortunately Kirsty was still not very well – her physio took one look at her and sent us over to the A&E department. Kirsty’s tummy, legs and hands were so swollen that the physio was very concerned about it. After spending four hours in A&E, the doctor was sure Kirsty did not have any blood clots but was still concerned as to why her tummy was so swollen. The only thing he could come up with was that it may be the new tablets that she has been put on for her pain. He asked to phone her pain doctor and explain whats happened, which we did, and after talking to them it was decided Kirsty should stop taking them as they are not doing anything for the pain anyway.

Update 12th December 2005

Kirsty was asked if she would like to go to Lapland with her brother and of course they both said “yes” and even though Kirsty took poorly and had to get a doctor to see to her, they both managed to have a brilliant time. 

Update November 2005

Not much change really, we are still having to take Kirsty to the hospital weekly for physio’ in the hydro’ pool. Kirsty has put some weight on, which was good news but the dietician thinks it’s down to the Scandishake, which are high in supplements, protein and calories. Kirsty is still not managing to eat a great deal and still keeps being very sick.

Update 19th October 2005

Kirsty is doing ok but is still going to the hospital every week, she had lost a little bit of weight today when we went, but she had been very sick for few days so we have got to have it checked again in two weeks. We have also had a phone call from Sheffield Children's Hospital they want to see her again on the 10th November to talk about some other treatment to help with the pain.

Update 2nd October 2005

Just to up date you with how Kirsty is doing. Well, we went to Sheffield Children’s hospital last Thursday and met with the pain doctor and two other doctors, unfortunately Kirsty was really poorly on the way and kept being really sick, so the ambulance driver had to pull over to allow us to see to her.

By the time we got to the hospital and the doctors saw Kirsty they all said how unwell she was looking and were concerned that she is still being very sick. They are not sure if the sickness has anything to do with the tumour that is on her brain stem, or if it’s to do with the surgery, but the last brain scan results were good and the tumour is not growing and is best being left alone, but he wants to look into this as Kirsty has been getting lots of headaches too.

The tumours that are in her leg will have to be removed because they have grown since her first scan. They are trying some stronger pain killers to help with the pain in her back, leg and groin. He is also going to talk with some other doctors to see what can be done.

Kirsty is also having to go weekly to hospital for physio’ in the hydro pool to help try and build her muscles up.

Kirsty still remains to be very happy and gets on with things; she is back at school but only for a few hours at a time as she gets very tired. Her school provide a taxi to pick her up and bring her home everyday.

Update 26th August 2005

Kirsty is continuing well with her recovery. A visit with the dietician yesterday showed she was only a few lbs short of her original weight which is good news.

Kirsty also spent some time with the physiotherapist and looking forward to the hydro pool next week.

Kirsty is having a lot of pain in her back, and after a call to the hospital her next appointment has been move forward by 8 weeks to 9th Sept.

We would like to thank everyone for all the cards that are keeping the postman in a job.

Update 26th July 2005

Thank you to everyone who has taken the time to write to kirsty all your letters really do cheer her up. She writes back to everyone who includes an address but for those who don’t she sends a BIG thank you to them too.

Update 20th July 2005

Kay is still very much up and down we are back at the hospital next week so the doc' can see how these two tumour's in her leg are doing. She's still getting a lot of pain when she walking but coping really well. We have got three hospital appointments next week with Kirsty, so we are just keeping fingers crossed that everything will be ok.

Kirsty was back at the hospital today (26th July ’05). The doctor had a look at the tumours in her leg and she felt rather than mess about with more scans that Kirsty should have both the tumours removed. One of tumours is around 3.0cm by 2.5cm and the other is now about 4.0cm by 3.5cm. Kirsty will have the tumours removed at Christie Hospital and hopefully will only be in hospital a short time.

Kirsty is all so going to see a doctor at Sheffield Children’s Hospital in the hope they can control some of the pain that she is in. They have said they cannot remove any of the tumours, which are in and on her spine or the ones that are in her groin.

One of the doctors Kirsty sees reckons Kirsty must have over 100 tumours in her body and it would be far too dangerous to touch any of them on her spine or groin.

Kirsty is back at the hospital Friday where she will have physio’ and also see her dietician. Kirsty is on high supplement drinks (Scandishake) and Polycal, which is high in protein and calories to help build her up.

Kirsty still continues to remain cheerful and is a great kid who tends to spend her time thinking of other poorly children and how she can help them feel better.

This is a wonderful site that is really helping to put a smile on a child face. Kirsty loves looking out for the mailman to see if she has any post and it helps to get her up early in the mornings.

"Everyone is so kind weather it be a card, letter or gift just knowing someone has taken the time to write to me really cheers me up. I tell everyone about post pals and how it’s helped me."

Update 6th July 2005

Kirsty is progressing well. She has seen her spinal doctor since coming home, where a spinal x-ray was taken, and this x-ray showed the bones are starting to repair and she no longer needed to wear her body brace, which is good news.

On her weight front, Kirsty was with the dietician yesterday and pleased to say she has put some weight on and is happy with her progress and too continue with what she is doing.

Schooling, Kirsty is how getting home tution 3 hours a week and is also working on her school gcse course work. Kirsty’s head teacher has been to visit her at home and out lined the schools support for her and also kindly brought her some school work.

Kirsty has an NF hospital appointment later to day over the tumours in her legs, will update you later about this.

Update 15th July 2005

Kirsty is still very much up and down at the moment and still getting a lot of pain, we have just received a letter from Sheffield's Children's Hospital to say they hope to see Kirsty very soon. She is also getting very tired. We are a little stuck at the moment and cannot get out much due to her dad braking his foot last week.

You have all made  big difference to Kirsty at post pals and i would like to thank you all for this.

Update 18th June 2005

Kirsty went back to the hospital yesterday (Friday), her doctor wants her to see a doctor in Leeds due to the pain she is getting in her groin, which is caused by the tumors in her groin. She is still not very well and it is going to take about 12 months before she is back to her old self.

Post pals has made a real difference to her with all the lovely cards, letters, stickers and gifts she has received everyone has been so kind and she’s made so many new friends too.

Update 9th June 2005

Just letting your all know Kirsty came home this afternoon and has managed a spot of retail therapy and a meal at her favorite restaurant at the Trafford Centre.

Update 8th June 2005

PM As things stand at the moment, Kirsty will be becoming home on Thursday afternoon. We are all looking forward to this day.

Kirsty has a day out planed for Friday with the Charity When You Wish Upon A Star, A gentlemen’s lunch to help promote the Charity. I know she will be telling you all more about it at a later date.

AM We sit here waiting for the ok to go home.
After Kirsty visiting the home over the last week for a few hours and some overnight, we our hoping the day to come home may only be hours away.

Update 5th June 2005

Kirsty is still in the hospital (three months now) and getting better, we hope to get her home one day next week, she has lost a lot of weight (almost 2 stone), so it will take some time to build her up again.

Kirsty got some lovely letters from a class of children in London whose teacher had been on post pals and read Kirsty's story, she spent all last week replying to all 25 children and teacher.

Update 30th May 2005

Once again Kirsty made that trip down the motor way to home for most of the day where she spent an hour at the supermarket food shopping and to see her brother at work. Kirsty then enjoyed a walk round the small estate we live on in the nice hot sunshine. Time pasted very quick before she had tea and had to return to the hospital. Tuesday Kirsty will visit the physiotherapist in the gym and have a weight checked. Kirsty was in good spirit and it was nice to see her at home.

Update 29th May 2005

Friday saw Kirsty home for a few hours for tea which went very well and on return to hospital Kirsty had a good night.

Today, Saturday, Kirsty had a visit from her best friend and spent most of that time in the hospital ground in the lovely sun shine we have had in Manchester today. Kirsty achieved the longest time on her feet and walking today.

We are hoping to have Kirsty home again tomorrow for most of the day and back in hospital again at night, they will then review how things have gone on Tuesday.

She received some lovely letters from some school children in London last week who had read her story on Post pals, so she's been busy writing letters to all the children (25 of them).

Update 26th May 2005

Big thanks from Kirsty for all the cards and gifts that keep arriving and a big thanks for all the messages from round the world.

We are sorry to say there is no good news. We were told yesterday that Kirsty will be in hospital for another three to four weeks; this is due to the weight loss and is now the main focus for everyone concerned with Kirsty’s recovery.
The main focus is to get some weight back on her and get her muscles strong so she is not reliant on others for walking.

It has been 12 weeks now since Kirsty first went into hospital, Kirsty is a very strong girl and I believe this and all your support will help Kirsty get over the last hurdle and see her return home in good health.

Kirsty is now attending the hospital school every day which helps pass the time.

She now has a portable DVD player so Kirsty and Julie spend most of the time watching that along with the TV...

Once again thank for your support and we hope you all have a good weekend.

Update 16th May 2005

Kirsty sends her love to you all and thanks you all for the card and good wishes that keep arriving in the post.

Today Kirsty got the results from the biopsy, the bug they had traced in a blood sample was not active so it will not be treated at this moment in time. They are continuing to treat the lining of the stomach and some valves in the stomach which are not working at their best, this my take some months to put right.
Kirsty had her regular Monday weight check and once again showed a decrease in weight, so they are thinking of tube feeding her along with the fluid over night top ups she is having.

Once again Kirsty managed to attend the hospital school for a few hours this afternoon and is still finding time to keep the nursing staff on their toes with the ghost.

With the weather here in Manchester being very sunny over the weekend we managed to take Kirsty a few laps round the hospital grounds in a wheelchair.

Update 11th May 2005

Morning -

Sorry for the lace of updates, new job and visiting taking my time up.
We hope you are all keeping well and its not getting too warm for you all with the sun coming out.
Kirsty is going for the camera in the stomach today; she will have to go to HOPE hospital for this, so it will be later today before we get any news.
One thing they will be looking for is a bug that has shown up in a blood test or ant damage for the first operation.
Kirsty was seen by the spinal consultant last Friday and he is very happy with the way the spine is looking and has asked her back in six weeks, which is good, he is still being updated over this sickness thing.
Kirsty is in good spirit most of the time and keeping the nursing staff on their toes about the hospital being haunted and there being ghosts on the ward, this hospital dates back to the First World War.
“Royal Manchester Children's Hospital was founded in 1829 as a small dispensary based in central Manchester for the treatment of sick children. It was the first such hospital in Britain and by 1855 the service had developed to a six bedded hospital. In 1873 the hospital moved to its present site, and in 1923 was granted Royal Patronage.”

Afternoon -

Kirsty has been down and all seemed too have gone to plan.
It looks as if it’s this bug that has been the problem and the lining of the stomach is very red, they have taken some samples and sent them to the lab.
Kirsty will be back on her ward later where I will find out more.

Update 3rd May 2005

Kirsty is still in hospital and Julie is also still staying with her.

Kirsty is still feeling unwell, but is now managing to drink and eat more so she is now off the over night fluid drip.
Her blood pressure is still up and down, it changes when lying down and standing up.
Kirsty is still waiting for the Barium meal scan results which I hope we will get today and help the medical team make there next move in putting Kirsty right.

The Brain scan results show Kirsty had NF tumours on the brain, but these had not changed in the last six years since the last brain scan. This is good.

Today Kirsty is seeing a doctor over a NF tumour that have appeared on her leg in the last 4 weeks, she had a scan on this the other week and this is the follow up.

Update April 28th 2005

Kirsty is still in hospital today, Thursday, still feeling unwell; she had a brain scan yesterday and are trying her on some different drugs to stop the sickness.
The ultra sound scan did not show anything and the blood tests have all come back ok.

As I update you Julie has just called me to say Kirsty’s blood pressure's up and down and she will be going down for a Barium meal scan this afternoon.

Update 24th April 2005

Sorry to report Kirsty is back in hospital.
Kirsty went for her first consultancy visit since coming home from surgery on Friday, she was not looking or feeling well when we left home, the tripe over to the hospital is some 40 minutes. On the journey over she became more unwell, on arrival she was taken in to see the consultant very quickly.
After some consulting with other members of his team and a member of the hospital medical team, Kirsty was sent over to the medical department where they started investigating what is coursing this sickness and with in minutes said they where keeping her in to run the tests.
Today, Sunday, she was put on a drip for liquid in take, all the tests to date are showing things are ok. Kirsty is hoping to have an ultra sound scan on Monday, but I think all this is pointing back to Body Trauma.

Update 22nd April 2005

Post Pals recieved a lovely card and letter from Kirsty thanking everyone who has written to her.

Kay went to clinic to day and her doctor was not very happy with the way she looked, she is still being very sick. Unfortunately Kay is back in hospital and they are running some more test.

From Kirsty's Mum

To All at Post Pals

How can begin to put into words how much you have helped not only Kirsty over the last few weeks but all our family.

A special thank you to everyone who took the time to visit Kirsty's web page and leave so many lovely messages and for all the lovely gifts and cards she has received, they certainly did put a smile on her face even when spending her birthday in hospital.

Kirsty is still poorly at the moment and awaiting the results of a new tumour which came up in her leg while she has been in hospital. But she wanted me to tell all her friends at Post Pals how touched she has been by all your support.

Thank you

Update 12th April 2005

From Kirsty

Thank you for all the lovely cards and gifts i have received while i was in hospital. It was a long four weeks but made so much easier by all the love kind words i received from so many lovely people that i did not even know.

I came out on Thursday but got taken back in on Friday over night, i had to have some more tests done because i had a high temp, which would not come down and was still being sick. The hospital is going to phone me on Monday to see how things are going. I lost over a stone in weight and a new tumour came up in my leg while i was in.

I am trying to get round to write to all the people who took the time to write to me and send me so many lovely gifts.

Update 7th April 2005

Kirsty is home! Thank you to everyone who made her birthday the best it could be.

Update 30th March 2005

Kirsty continues to be in some pain and even more now as they start to move her. Yesterday she was sat up for a short time, but this made her light headed and sick. Today she was sat up and in some great pain. Eating and drinking is still very little, so she is on a drip, it’s the combination of don’t want to eat or drink as she does not want to be sick, being sick gives her pain, giving her morphine for the pain makes her sick and on top of that they are checking her for a water infection again.

Other than that, when Kirsty is settled she is in good spirit.
Kirsty had a big boosting visit of her best friend Julie and her family.

Also the gifts and get well cards from people we don’t even know keep arriving and to these people and all are friend we say a big thank you.

All your kind words are passed on to Kirsty every day.

Update 25th March 2005

It’s all over after a very long day.
Kirsty went into theatre 9am (UK) time; she was under for about 6.5 hours.
The operation was carried out from the back putting steel in from L3 to L9 with a total of 9 screws, and also a bone graph from the hip.

Kirsty looked very well when she came round, I left her about 9.30pm and Julie has just called me to say Kirsty was very comfortable

Update 23rd March 2005

Kirsty’s Surgery is going a head at 9am this Thursday 23rd.
All test results are back and the temperature has stayed on the right side, so if nothing happens with her in the next 9 hours it will happen.

Kirsty is looking well in herself, and with visits from her two best friends this evening she is in good spirit.

Julie and I would like to thanks you all for your continued support and kind words, and we think of you all everyday, when we look at the wall of cards and gifts next to Kirsty’s bed from people we don’t even know and that is very touching.

Update 21st March 2005

PM - Sorry to say it’s off again, got Kirsty down to theatre to find her temperature was very high, after a few minutes of consultation and a few phone calls it was decided the risk was too high to take. They believe Kirsty has an under lying infection. More blood tests.

Kirsty needs to have a temperature of no more than 36c for the next 48 hours for them to go for a Thursday operation and if that fails it will be next week with a different surgeon due to her guy being on vacation. It’s a waiting game now.

I don’t know how she is feeling at the moment, the only thing Kirsty said was "it looks like I will be in for my birthday".

I will keep you posted on how Kirsty is.

Thank you for your continued support.

Thanks to post pals for sharing this story on their web site.
A big hello to all the people that have visited Kirsty’s web site, that have come from post pals and a big thanks for all the get well cards and Easter card that have started to arrive.

AM - Quick one to let you all know Kirsty will go down after 2pm UK time today.

Update 20th March 2005

Kirsty is feeling ok at the moment; she says her back feels funny where the discs are missing, a hard spine in to a soft hole.

Kirsty is managing to sit up with the help of pillows, and is enjoying the companionship of a young man that is no the ward, she also had a number of visitors and today here best friends from school will be going.

Update 18th March 2005

I asked her about the operation this morning and she said she was not bothered, I think she is more interested in the young boy in the bed round the corner from her, I think the nurse is playing match up.

Update 17th March 2005

Thursday

Today’s operation was called off this morning due to Kirsty having an infection; this is most properly why she has been so sick this week.
Kirsty has a water infection which would spread very fasted once the steel was put in, the bugs would cling to the steel and make her very ill and keep her in hospital for a few months.
So they are going to treat the infection now and operate next Monday or Thursday, hope to find out later today.

Wednesday

Kirsty was still a little sick over night but this afternoon she was like her normal self.

Thursday's operation will be carried out from the back and not the side like last week.
The NF tumours are the problem the surgeon has sow the steel work will be from disc 3 to 9 (last week it was going to be 3 to 7), he will also be doing a bone graph from the hip to pasted on to the spine to help with the healing, the surgery is planed to last six hours.

Tuesday

Kirsty has had another 24 hours of being sick, good new is she is looking well tonight and not feeling sick and giving mum and dad her normal lip. Surgery is planned for Thursday.