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 1st March 2011

I am going to start with the good news this month.

Kirsty’s book is now live and selling well, she did a radio interview last Monday and a couple of papers have covered her story about the book. The royalties from the sale of the book are going to charity and although the book can be bought both in the shops and on line, it is much cheaper to buy it from Kirsty or the publisher. Plus Kirsty can sign copies for people who buy it from her. All you need to do if you want a copy of Kirsty’s book is go to her front page at www.kirstysstory.co.uk and click on the buy now button. Three of her doctors have written in the book along with many other people who are involved in Kirsty’s care. Kirsty also gives Post Pals a big mention in her book.

Kirsty’s sickness got really bad again this month and Kirsty ended up back in hospital for a couple of days having to have IV fluids and anti sickness injections. The hypnotherapy is not helping with the sickness.

Kirsty saw the doctor over the operation on her knees this week and after having more x-rays he thinks she may be starting with arthritis in the joints too. He is sending her for another MRI scan so he can see if any of the tumours have grown before they do the surgery. He did not mention anything about the MRSA bug that they keep saying she has.

Kirsty also received a letter to say her spinal doctor wants her to have a full spinal scan done so he can see how the tumours on her spine are progressing.

Let’s finish on some more good news. Kirsty is going to London later this month as she is in the finals for the VInspired award. I will let you know how she gets on.

Thank you for taking the time to think of Kirsty and write to her. Kirsty received a lovely teddy and a package full of gifts this month, which really put a smile on her face as she was having a bad month with her illness.

Update 12th February 2011

Kirsty has asked me to thank you all for your kind words over her book.

She is not so well at the moment with the sickness and a lot of pain in her back. We are not sure if any of the tumours have grown on the spine.

Kirsty see’s her NF doctor on Tuesday who is also bringing another doctor along to see Kirsty.

Kirsty’s book can now be bought from her web page www.kirstysstory.co.uk and Kirsty said she will sign copies for people who buy from her web site, but can’t sign the ones bought from the publisher. Every copy sold will grant wishes for other poorly children. Post Pals is mentioned as they have helped her so much over the years. I think Kirsty must be one of the longest members of Post Pals now.

Update 11th February 2011

I have some great news; Kirsty’s book is now on sale, “Kirsty’s story” living with Neurofibromatosis and scoliosis. Kirsty is hoping to raise lots of money for charity by the profits from her book at the same time as helping other people who suffer from these cruel conditions. You can buy the book at the following link
http://www.authorhouse.co.uk/Bookstore/BookDetail.aspx?BookId=SKU-000408684

Kirsty is still having a bad time with the sickness and the pain in her back. She sees the doctor who is doing surgery on both her knees so he can explain the implications involved in doing surgery while she has the MRSA bug.

She is still in a lot of pain and is having a fitting for her new back brace this week.

Post Pals is mentioned a lot in Kirsty’s book, as you will read if you buy a copy.

Update 30th January 2011

There is no real change in Kirsty this month. The operation on her knees has been put back yet again as she failed the pre op check again and they are saying she has still got MRSA. The last time I spoke with the lab they said the swab that they do up Kirsty’s nose is the one that keeps coming back positive and that she may never get rid of it. The lab are talking with the doctor next week to see if he will do surgery while she still has the MRSA bug.

The sickness was really bad at the beginning of the month and Kirsty ended up at A&E. They gave her some IV fluid and an injection to stop the sickness.

Kirsty saw her gastro’ doctor last week who decided to put Kirsty on a tablet called Colofac. Colofac is used for IBS, but because Kirsty’s tummy keeps swelling up, the doctor wants to see if these tablets will stop the swelling of her tummy. If you go on Kirsty’s web page (www.kirstysstory.co.uk) you can see how bad her tummy keeps swelling (just click on the 2010 link). The doctor wants to see Kirsty again in six weeks.

News on Kirsty’s book is that the book goes live within the next ten days and Kirsty is really excited about this. I will post details so people can buy the book as soon as we have the information. All money raised from the sale of the book will go to charity.

Staff at the university that Kirsty attended put Kirsty forward for the Vinspired award and we have just had news that not only is she a regional winner, but she is now a national award winner and is off to London in March to see if she is to be named the overall winner for the inspirit award.

Thank you to the people who took the time to write to Kirsty this month, Kirsty loves getting your mail.

Update 23rd November 2010

There is no real change in Kirsty this month. The operation on her knees has been put back yet again as she failed the pre op check again and they are saying she has still got MRSA and cannot do surgery on her while she has this bug.

The sickness was really bad this month and we had to take Kirsty into hospital. She was given an anti-sickness injection and put on iv fluid before being allowed home later in the evening.

Kirsty is now going to try hypnotherapy for the sickness. She had her first one yesterday and it’s still early days, but she was really very sick last night.

Work has started on her book this week and she is keeping fingers crossed that it is on sale in time for Christmas.

Her charity spookathon went really well and Craig Gazey who plays Graham in Coronation Street came along and supported Kirsty at the event.

Kirsty has been invited to the Lord Mayors dinner on Thursday for all the fund raising that she does. She went about two years ago to the Lord Mayors Christmas dinner when she won an award and he has now been invited back due to her continued work to help others.

Kirsty said she does not want to take anymore tablets as they are not doing anything to help with sickness or the pain, which I can understand.

I hope you all have a great Christmas and a big thank you to the Post Pals team for all your hard work over the past twelve months.

Update 2nd November 2010

Kirsty’s operation to remove five tumours went well, apart from two of the tumours that gave the surgeon some difficulty, as he did not know until he had started to operate on them that the tumours had also grown deep into the muscle and were much larger than first thought.

Kirsty’s next operation is on the 22^nd November but we have just received a call to say that she is still carrying the MRSA bug, which I can’t understand as Kirsty had two MRSA swabs done at different hospitals within 12 hours of each other, and one came back clear the other came back saying she still had the MRSA. So I have got to ring the hospital tomorrow to find out what happens next. This operation has been put back so many times now due to this MRSA.

The sickness is still very much the same but I’m pleased to say it has not got any worse after her recent surgery.

Work starts on her book on the 17^th November and we are still looking for it to be out in time for Christmas.

Kirsty’s got her charity spookathon this Saturday and will be staying in a haunted place over night. Many of her ambulance drivers and other people involved in her medical care are doing the event with her, along with some star guests and the Manchester paranormal team. Anyone wanting to support Kirsty on this event can do so by visiting her just giving link on her web page.

Kirsty’s University put her forward for an award and we have just found out that she’s won for the North West and will now go into the finals to see if she will be named the overall winner.

Thank you for thinking of Kirsty and for writing. She received a set of DVD’s from Mari and 2 games from Post Pals too. Thank you so much to both of you.

Update 24th October 2010

Kirsty is home from hospital. They managed to remove five tumours – the ones in her leg and arm had gone deep into the muscles. She is in some discomfort and has been told to rest.

Sending love and hugs to all.

Update 22nd October 2010

Just to say a big thank you to Miriam for the DVD’s that she very kindly sent to Kirsty.

Kirsty is in hospital and will be having surgery Saturday morning to have five tumours removed that have started to grow and are giving her a lot of pain. I will keep you informed on how things go.

Update 6th October 2010

There is no real news as there isn’t any change in Kirsty’s condition.

We had a lovely holiday in Florida, apart from Kirsty’s sickness, which she coped with very well. On the flight home Kirsty was taken poorly, the flight crew had to ask if anyone on board the flight had any medical knowledge. The pilot was going to divert to a different airport but a lady came forward to see to Kirsty. She was unsure if Kirsty had developed a blood clot on her lung and asked the crew if they had any aspirin that she could take to thin her blood out. I was very unsure about Kirsty taking aspirin as she is not meant to take it due to her tummy problem, but this lady said it better for her to the aspirin than not to take it. Kirsty was also put on oxygen for the remainder of the flight home. When we arrived at the airport a paramedic boarded the flight to see to Kirsty before anyone was allowed to get off. He did some blood tests and said her blood sugar was very low and after doing some more tests he arranged for an ambulance to take Kirsty to hospital. The ambulance came right up to the plane and carried Kirsty off. John, Kirsty’s dad, had to go and get the bags and met us at the hospital later. I am pleased to say Kirsty is ok now, it was just very worrying at the time.

Kirsty is going into hospital in the next two weeks to have five tumours removed and then on the 22^nd November she is going into hospital for surgery on both her knees. She will be out of action for a good 8 to 12 weeks after the surgery so if anyone has any good DVD’s they can lend her to watch that would be great.

Thank you for all Kirsty’s post, it is really appreciated.

Update 30th August 2010

There’s no real change in Kirsty’s condition, she still continues to be sick most days, which gets her down at times as she cannot go out for a meal with her friends.

We saw Kirsty’s gastro’ doctor this week who confirmed that the last two allergy breath test were clear and that she is not allergic to milk. The doctor is still very concerned that Kirsty is still being so sick and told Kirsty that she must go to the A/E department when the sickness gets bad, but Kirsty said that she feels daft turning up at the A/E department just because she is being sick when people are attending with their fingers hanging off. The doctor explained to Kirsty that with her condition it could be very serious if she got too dehydrated and said that she will write a letter to give to Kirsty that she can take along to the A/E department, if it made her feel any better, to say that Kirsty suffers from gastroparesis and that the doctor requested that Kirsty come to A/E and that the named doctor must be informed that Kirsty is in the A/E department.

The new back brace is helping Kirsty with the back pain.

We also saw the NF doctor this week who thinks that Kirsty’s foot drop may have worsened a little. Kirsty did not have any new NF problems but the NF doctor said it was important that she saw Kirsty at least once every six months.

We should have the date for Kirsty’s book going on sale soon, so keep an eye out in the paper for that.

The operation on her knees will be done when we get back from holiday as the doctor has now said that she cannot fly for six weeks after surgery. I will try and keep you posted when her operation is.

Thanks for taking the time to write to Kirsty and for thinking of her. She received a craft set that will keep her very busy when she goes into hospital later this month.

Update 3rd August 2010

No news really. Kirsty still continues to be sick most days and both the tests that she had this month came back clear. We now see the doctor on the 27^th August to find out what happens next.

We have not had the result of her spinal scan yet, but Kirsty has been in a lot of pain with her back. We picked up her new back brace last week, which is helping a little.

We attended the UK fundraiser awards in London as Kirsty was in the final three; she did not win but still had a great time, apart from her having to keep leaving the room as she was being sick.

Kirsty is to see her NF doctor at the end of the month so hopefully she may be able to help with this sickness.

The operation on Kirsty’s knees has now been put back yet again. The doctor said that Kirsty will not be able to fly for six weeks after the surgery and we are going away in September. It looks like the operation will be done when we get back. I will keep you all posted.

Kirsty says; thank you for thinking of me and taking the time to write to me. I received a lovely teddy from a lady called Rose who lives in Co. Down this month. The teddy is about 3 inches tall and holding a mouse. It came with its own little bottle of coke and eaten apple. It really is very sweet and it made me smile when I saw it.

Update 19th July 2010

Just to let you know that Kirsty’s story is in the Weekly News at the moment. You can see a picture of her on the front cover and the date issue is 17th July. You can only buy this issue up to the 22nd July.

Kirsty is doing well but is in hospital for the day on Wednesday having tests for this sickness and again next Tuesday for the day.

Sending love to all the other brave children and a big thank you to everyone who has written to Kirsty over the past few weeks.

Update 4th July 2010

Kirsty is still not having a good time with this continued sickness and has been really poorly this month.

Kirsty is having a hydrogen breath test on the 21st July to investigate whether she has a bacterial overgrowth in her small intestines. Then on the 27th July she goes for a lactose intolerance test. These tests will hopefully help the doctors on which way to help with the sickness.

Kirsty saw the doctor over the tumour in her arm and it was decided that it should be removed along with three other tumours that are growing.

Kirsty’s been in a lot of pain with her back and when she saw the doctor (the one she sees for the pain that she is in) he felt it best if Kirsty has another spinal scan to make sure none of the tumours in her spine have started to grow.

On a good note, Kirsty and I both visited Buckingham Palace last week. The Manchester Evening News arranged for us to travel in a Bentley as it is difficult for Kirsty to travel by train. You can read how Kristy’s day went and see more pictures by going on Kirsty’s web page www.kirstysstory.co.uk. We are back in London on Monday the 5th July as Kirsty is in the final three to be named the UK Fundraiser of the year. I will let you know how Kirsty gets on.

Kirsty says thank you to everyone for the lovely cards that she received this month, which helped me with another very difficult month. I had many letters this month and I have tried to reply to them all. Also, thank you to all who sent me gifts, I have written to the ones who sent their address.

Update 31st May 2010

Kirsty is still not having a good time with this continued sickness and has been really poorly this month. We have not got the date for the gastric emptying study to be done yet, but hope to have the date soon.

We have got the date for Kirsty to see the doctor for the tumour in her arm, which is giving her a lot of pain at the moment.

Unfortunately, Kirsty’s operation on her knees has been put back yet again as she failed her pre’ op’ and is still carrying the MRSA bug. They cannot do the op’ until Kirsty is well and free of the MRSA bug.

I would like to say a big thank you to everyone who has taken the time to write and send gifts to Kirsty you have all been a big part of Kirsty’s life and have helped put a smile back on her face during some very difficult times.

On a good note, Kirsty and I have been invited to the Queens Garden Party on the 22^nd June, which we hope Kirsty will be able to attend. I am just having problems getting Kirsty to London at the moment as Kirsty’s dad is working and going by train maybe a bit difficult for Kirsty if she starts to feel unwell. We will just have to see how things go.

Kirsty says: I had so many cards this month I could not possibly name them all, but I would like thank everyone for the lovely cards that I received, which helped me with another very difficult month. It is really kind of you all to take the time to write to me and the other poorly children on Post Pals. Thank you to everyone who sent me letters and gifts too, I have tried to reply to those who sent their address.

Update 30th April 2010

Kirsty is still not having a good time with this continued sickness. She was at the hospital last Wednesday due to the sickness being so bad and they are now going to do a gastric emptying study. This procedure will be done by the nuclear medicine physician using radioactive chemicals that will measure the speed with which the food empties from Kirsty’s stomach and enters the small intestines. Kirsty also needed some more blood tests doing, which never go down well for Kirsty.

While we were at a family wedding last week, Kirsty took poorly and her tummy swelled up and felt really hard and on the way back to the hostel she started being really sick again. I took a picture of her tummy to show the doctor and he was unsure what was happening. Her tummy went down after a few hours.

Kirsty’s also started having problems with her arm and about three weeks ago she developed a small pea sized tumour under the skin on her arm and now the same tumour has grown and is the size of a conker. It’s not helping that the tumour is in line with the arm hole on her crutches. Kirsty GP had a look at the tumour and said that it needed to be removed and referred Kirsty to the hospital.

Kirsty has also seen the surgeon who is going to do the surgery on her knees. The surgery will be going ahead, but the only way it can be done is by giving Kirsty a general anaesthetic and that she would not be able to have an epidural due to the mess her spine is in.

The pain in her back has been really bad recently and she had to result to wearing her back brace more. I am going to give the spinal doctor a call next week and find out what is happening.

On a good note, Kirsty has been short listed to be named the UK fund raiser of the year and you can read more info about this award on Kirsty’s web page.

It was really nice to see so many new visitors to Post Pals this month; Kirsty received so many emails from people who heard about it on the TV. It was really nice that so many people took the time to visit the Post Pals page and also take the time to write and email the children. Well done to Post Pals, I think we all needed something nice to happen after the month we have had with loosing so many of our brave children in the past few weeks.

Kirsty says: I had so many cards this month and I could not possibly name them all, but I would like thank everyone for their lovely cards which helped me with another very difficult month. It is really kind of you all to take the time to write to me and the other poorly children on Post Pals. I had so many letters this month and I have tried to reply to them all. I received lots of birthday gifts and other gifts too, and again I have tried to write to everyone to say thank you.

Update 7th April 2010

Hi to all my friends. I just want to say a big thank you for all the lovely birthday cards that I have received along with some really lovely gifts. I had been feeling a bit down with this continued sickness and opening all these lovely cards brought a huge smile to my face, as my mum and dad will tell you. Thank you so much for being part of my day.

I hope to have news of when my book is on sale soon and Post Pals is mentioned a lot in it as they have been such a big part of my life too.

With lots of love, Kirsty xx

Update 31st March 2010

Kirsty is still being very sick after having anything to drink and was taken into hospital on Mother’s Day morning as she was really unwell and could keep nothing down. She was given an injection to stop the sickness and was put on a drip to get some much needed fluid back into her. Kirsty is back home now and she is on even more anti sickness tablets, so we will just have to see how things go.

We only saw her grastro doctor a few weeks back, who put Kirsty on another anti sickness tablet that she is to take three times a day. We were not meant to be seeing the gastro doctor until August, but have just received a letter to say that she now wants to see Kirsty in April.

This sickness is really beginning to drain Kirsty now and she is very black under the eyes.

Kirsty sees the doctor over the operation on both her knees this month, so we should be given a date or told what is happening. They are still worried about doing the operation on Kirsty due to this sickness but it needs doing and they want to talk to us both about what happens next.

On a good note, Kirsty’s book should be published and on sale in July. I will let you all know when we have a date. Kirsty’s mentioned Post Pals in her book and how much they have been a big part of her life since she joined in 2005.

Kirsty says; Thank you for the lovely cards that I received this month, which helped me with another very difficult month. It is really kind of you all to take the time to write to me and the other poorly children. Thank you to Sarah, Claire, Becky, Natalie, Wendy, Elizabeth, granny Ruth, Julia, Lisa, Amy and Brooklyn, Maria and Libby. Thank you to Mrs Ball for the lovely letter. My mum received a lovely gift from Elizabeth, which was nice and very kind of her to think of my mum. Elizabeth sent both my mum and me some lavender that she grew in her garden and it smells lovely. I also received some make up and craft sets but I am sorry I could not make the names out to send a thank you card back to them.

This month has been such a bad month for Post Pals as we have lost three very brave children, which was very upsetting for all. I can’t begin to think how their parents must be feeling, all I can do is to let them know we are here for them and always will be.

Update 28th February 2010

Kirsty is still having a difficult time. She is still being very sick after having anything to drink. She saw her gastro’ doctor last week who now wants Kirsty to try another tablet three times a day along side what she is already taking, to see if it will help with the sickness. Kirsty said she is going to try hypnotherapy for the sickness and the doctor said that would be ok, but they want her to have it done at the hospital and not for us to get someone to do it. They are sending her to see the hypnotherapist at the hospital asap. Kirsty said she will try anything now as it is stopping her from doing a lot of things. When we go out she can’t even have a cup of tea or coffee in case she is sick after it. We will just have to see how things go and keep our fingers crossed.

Kirsty is still carrying the MRSA bug so the op’ on her knees cannot take place until she’s had three clear swabs.

Kirsty is having a very difficult time of it at the moment she could do with lots of continued TLC at the moment. She is in a lot of pain and feels worn out with keep being so sick. I really don’t know how she is coping, if I am sick just once I feel bad, but for Kirsty this is something that happens every day and has done for the past ten months.

A big thank you to everyone who took the time to send gifts this month, I know Kirsty wrote to all who included names and addresses.

Kirsty said “Thank you for the lovely cards that I received this month, which helped me with another very difficult month. It is really kind of you all to take the time to write to me and the other poorly children on Post Pals. Thank you to: Tracey, Karen, Kate Dee, Sandra, Becky, Claire, Sarah G, Arlen, Vikie. Thank you for the lovely letters – Clare, Elizabeth, Mrs Ball, Sarah. I also received a really nice craft set from Tracey, a poodle from Becky, Card making kit from Claire, Valentine gift from Poppicraft, and craft set from Arlen.”

Update 30th January 2010

This month as been no different from last month and Kirsty is still being very sick after having anything to drink. The doctor at the Warrington hospital contacted Kirsty’s gastro’ doctor to say that Kirsty had been taken into hospital with dehydration due to sickness again and would they please bring her appointment forward. Her appointment was brought forward by four weeks, which means she will now be seen this month instead of March.

Yesterday, Kirsty saw the neuro’ surgeon over the brain scan results and the good news is that there is no pressure on the brain and they will not need to do any surgery. However, she still needs to be seen by another doctor over the other tumours found on the brain scan so the scan can be compared against the one she had previously and to see if it is safe to leave the tumours found on her optic nerve.

Kirsty also went for her pre op’ check this week to make sure she was fit to have the operation on her knees. Unfortunately they found a problem with her breathing and did a trace of her heart, which showed problems. They said her heart rate was only going at 50 bpm and she was sent for an urgent lung function test, which did not come back with good results. They also spoke about the difficulty of giving a general anesthetic due to Kirsty’s gastro’ problem. They cannot give her an epidural due to how her spine is, so the anesthetist said he wants to make an appointment to see Kirsty and chat about the problems involved. They also tried to get a blood sample incase she needs a blood transfusion (can’t see one being needed) but as we know, Kirsty and needles just don’t go, and after having a few attempts they gave up and said they will try again when she next comes. Kirsty was really upset and both her arms were black and blue from where they tried to put the needles in.

Then this week Kirsty received a call to say that she is carrying the MRSA bug and surgery cannot be done until the bug has been killed. This is done by treating Kirsty’s skin every day over the next three weeks and she must have three clear swabs before surgery can be done. They think she picked the bug up when she was last in hospital. The operation on her knees will not be done until March now at the earliest. The pain in her knees is getting worse by the day and both knees keep giving way after only making a few steps. But even with all this going on Kirsty is still smiling.

Thank you for the lovely cards that I received this month from Claire, Joanne, Sophie, Suzannah, Anna, Wendy, Mrs T Welham, Louise Evens, Juno and Muffin. Thank you to Mrs Ball, Kate, Becky, Michelle, Clare, and Sarah, for the lovely letters.

Update 5th January 2010

We have had another difficult month; Kirsty is still being very sick after having anything to drink and unfortunately was unable to eat her Christmas dinner as she was just being sick all the time.

We received a letter from Kirsty’s spinal doctor to tell us what happened at the spinal scan/x-ray meeting in which her results were reviewed. The doctor told us that Kirsty now has a degree of junctional kyphosis at the top of her metalwork and the scan showed predominately dural ectasia. The doctor is going to send for Kirsty to talk to him more about the results and does not really know what to do next. Having surgery is very risky and could cause even more damage.

Kirsty is going ahead with the surgery on her knees and goes for her pre’ op check on the 19th January. They want to do surgery on both knees, which will put Kirsty out of action for about 8 weeks. They are going to try is an arthroscopic ‘lateral release’ whereby through keyhole surgery the tight lateral structures can be cut to allow the kneecap to sit more centrally. Sometimes this procedure is not enough and needs to be combined with a reinforcement or double breasting (reefing) of the weakened medial structures including some of the quadriceps muscles (VMO advancement). They are not confident that it will work due to the tumours in Kirsty’s knees, but want to give it a try before going on to do a more difficult op’ where they will have to put screws in her knees to make them stable.

We also received a letter over the brain scan that Kirsty had and she is to go see the neuro’ surgeon next week when he is back from holiday. This is very worrying as we don’t know what they plan to do over the tumours found at the back of Kirsty’s eyes, along with some others that were found on the scan.

Kirsty was also back and to the hospital with both her ears being infected and inflamed and had to keep having them vac’ out, if things don’t settle down she may have to go in hospital and go on an antibiotic drip for a few days.

On a good note, Kirsty received lots of lovely gifts from people who have read about her on her Post Pals page. One lady (Wendy) saw that Kirsty was on elbow crutches and bought some really cool blue ones. Kirsty loves them and said they are so much more comfy than the ones that she had. Kirsty would like to say a big thank you to all the following people who sent her gifts over the Christmas holiday: Post Pals, Wendy, Mrs Ball, Sue, Zoe, Lucinda, the Hughes family, Alison and to the ones who never gave their name. Kirsty will write and thank all who gave an address over the next week. You all really made her Christmas to know so many people were thinking of her. Kirsty’s had a bad few months and it does not seem to be getting any better for her at the moment.

My wish for Kirsty is to see her book published this year, it’s her dream and she’s worked so hard putting it together to help others that I would love to see her dream come true and something nice to happen for her for a change. Her book tells of her fight against NF, so if anyone knows of any publishers please let me know and help me make her dream come true.

Update 17th December 2009

We just want to wish all the brave children on Post Pals a very merry Christmas and we hope that 2010 is a much better year for you all.

To all the staff a Post Pals, thank you so much for everything you have done for Kirsty over the last four years, you have made such a big difference to her life over the years she’s been a member of Post Pals (I think Kirsty must be one of her first to join Post Pals that is still with you).

Kirsty still loves getting post and it still helps her cope with another day of pain. Kirsty recently won the Princess Diana Gold Award, if you would like to read more about it you can click on the following link here.

Kirsty is still having a bad time of it at the moment and is in and out of hospital with dehydration due to the continued sickness. I also received a call from the doctor, she was not happy with the brain scan results and Kirsty needs to see a neuro’ surgeon in the New Year when he is back from his holidays. We are going to put it behind us for now and try and enjoy Christmas.

Love and hugs to you all.

Update 29th November 2009

We have had another difficult month; Kirsty is still being sick and was so dehydrated last week that she was rushed into hospital and spent four days on a drip to try and get some fluid back into her.

We were keeping fingers crossed that she would be aloud home in time for her to go to London. Kirsty had won the Princess Diana Gold Award and had been invited to 11 Downing Street along with 9 other young people who had also won the award. The 10 young people had been chosen for the gold award out of 27,000 other young people who had all won the Princess Diana award over the past ten years. The gold award was to mark the 10^th Anniversary of the Diana awards. Kirsty won her Diana award back in 2005 and due to her continued charity work she was awarded the gold award.

Kirsty held her spookathon on Friday night where she stayed in a haunted Town Hall over night. Twenty five people involved in Kirsty’s care, nurses, ambulance drivers and physio’s did the event with her. The event was filmed for Channel M and will be on Channel M on Monday. Click the following link to watch the TV interview on the award that Kirsty won and the spook night. The event raised over £1000 with lots of money still to come in. Video here.

The pain in her back is no better and doctors are meant to be having a meeting as when they tried to scan her spine they had problems getting a needle in her arm to inject the contrast dye.Kirsty saw the doctor over her knee problems last week and they have now said to Kirsty that she really needs an operation on both her knees and have given her three weeks to make up her mind.

Her next dream is to see her book published, which tells of her fight against NF, so if anyone knows of any publishers please let me know.

Thank you for the lovely cards that I received this month, which helped me with another very difficult month. I replied to the ones who gave their address, it’s really kind of you all to take the time to write to me and the other poorly children on Post Pals. Thank you for the lovely letters from Mrs Ball, Becky and Sue. My mum received a box of chocolates that she shared with the rest of the family and my mum wants me to pass on her thanks for thinking of her too.

Update 23rd November 2009

Great news, Kirsty came out of hospital at weekend.

We are taking Kirsty to London today as she has won a big award (the Princess Dianna 10th Anniversary Gold Award). Kirsty, along with nine others, have all been invited to Downing Street (look out for her on the news).

She is also getting ready for her big spook night on Friday.

Thank you to everyone who has sent Kirsty letters, cards and gifts, you all really do help put a smile on the faces of these very brave children.

Update 18th November 2009

Kirsty was rushed back into hospital this week with dehydration due to her not being able to keep any fluid down. When we went to see her this evening she had been moved to a different ward. She is still on the drip to try and get some fluid back into her and they also think she may be trying to fight some kind of infection due to her having a high temperature. They x-rayed her tummy and they can see a blockage, which they are also trying to clear up.

Kirsty was very upset last night as they tried seven times to try and get a blood test without success.

We are hoping Kirsty is out for Monday as we are meant to be going to London as Kirsty has won an award. This is for how well she copes with her condition and at the same time raising so much money for other poorly children.

Kirsty could do with some TLC as she is not in one of our local hospitals which is making things hard.

Love to all Post Pals.

Update 1st November 2009

We have had another difficult month; Kirsty is still being sick and has been in a lot of pain with her back.

The London trip was not much help really, the doctor Kirsty saw was really nice but we were under the impression that the reason for going to London was to talk about if Kirsty was suitable for treatment in USA, but the doctor had not even seen any of Kirsty’s scans so could not comment on anything. She wanted Kirsty to think about having spinal surgery at one of the London hospitals but Kirsty is happy with the spinal doctor that she see’s here and does not want anyone else to do the spinal surgery. The pain in her spine is really bad at the moment and her pain doctor has doubled her pain medication to see if they can get on top of it for her.

Kirsty is still being sick but it has been a little better, having said that she is not really drinking anything as it’s when she drinks that she is sick. I was sent a link this week from a lady who had read Kirsty’s web page and she told me about an article that she read where this woman kept being sick and doctors put a pacemaker in her stomach and it stopped her from being sick. It is pioneering treatment which involves a special pacemaker being attached to the stomach. The pacemaker is implanted under the skin, with wires going down into the muscle walls of the stomach. When the patient is eating, gastric activity prompts the pacemaker to send a small electrical impulse to the muscles and the gut contracts helping the stomach to move the foodstuff along the gut.

Kirsty was diagnosed with gatroparesis – paralysis of the stomach – which makes the stomach digest food too slowly or not at all. I am going to mention this treatment to Kirsty’s doctor. The operation costs £10,000 but we should be able to have it done on the NHS. It’s early days yet and due to other health problems that Kirsty has she may not be able to have this treatment.

Her next dream is to see her book published, which tells of her fight against NF, so if anyone knows of any publishers please let me know.

I would like to say a big thank you to everyone who has taken the time to write and send gifts to Kirsty. She says thank you for the lovely cards that were received this month, which helped her with another very difficult month. Thanks to Sarah, Sam, Sarah G, Mrs Ball, Viks and Zoe. Thank you for the lovely letter, Mrs Ball. She also received a paper lantern and is looking forward to lighting the fuse and sending it up to the sky.

Update 29th September 2009

We have had another difficult month; Kirsty is still being sick and has been in a lot of pain with her back.

We have not had any news about the brain scan, which I am looking at as being good news.

Kirsty went for her spine scan last week, she came out of the scan room breaking her heart, I have never seen her so upset for a long while. Apparently the doctor doing the scan said that he needed to inject some contrast dye into her arm – Kirsty told the nurse that I had a tube of the magic cream on me and would they put it on before giving her the injection, so they came and got it from me. Unfortunately, Kirsty’s veins are very poor and tend to collapse every time they go in with a needle. After having five attempts at getting a needle in and each time the same thing happening, Kirsty asked if I could come in the room and hold her hand while they tried again. They refused to come and get me (I was only in the waiting room) saying she would be ok and that they would try in the back of her hand. Kirsty pleaded with them not go in the back of her hand but they did not listen and tried the back of her hand and again the vein just collapsed. All in all they tried eight times to get the needle in without success and her arm is black and blue. They are now going to talk with Kirsty’s spinal doctor and ask if Kirsty really needs a another scan with the contrast dye and if he says he does, then she will have to go on the ward while they try and get a needle in.

We are going to Guy’s in London tomorrow as Kirsty’s NF is so bad internally that her NF doctor over here has asked for a second opinion. There was talk of Kirsty seeing a doctor in the USA as they are doing drug trails to try and shrink the tumours. Kirsty is still being very sick, which I am going to mention to the doctor on Wednesday.

We are going to London by ambulance as it will be more comfortable for Kirsty and she can lie down for the journey.

She fulfilled one of her dreams to attend Uni’ even though the doctors wanted her to take a year out and to get herself well.

Her next dream is to see her book published, which tells of her fight against NF, so if anyone knows of any publishers please let me know.

I would like to say a big thank you to everyone who has taken the time to write and send gifts to Kirsty you have all been a big part of Kirsty’s life and have helped put a smile back on her face during some very difficult times.

Update 12th September 2009

We have had a difficult month; Kirsty is still being sick and has been in a lot of pain with her back.

We took Kirsty over to the USA for two weeks and I forgot to pack one of her important tablets for the pain. We tried to get them posted out to us, but due to what type of pain killer it was, the Embassy said we would not be able to get them posted out to us. So, unfortunately Kirsty was in a lot of pain and she also continued to be very sick every time she had anything to drink. I got a little cross with one of the air stewards as when she saw Kirsty being sick she told her to go to the toilet as people were watching. Kirsty was very upset by the remarks. I went and told her that my daughter was very unwell and was not able to jump up every time she was going to be sick. After I had explained she was very sorry for what she had said to Kirsty, she said she did not know and that Kirsty looked so well. She did go and say sorry to Kirsty for what she had said.

Kirsty had to go for a brain scan the day after we got home and goes for a full spine scan next week. She saw the doctor over her knees just before we went away and they wanted to do surgery on both Kirsty’s knees, but Kirsty was not happy for him to do the surgery. I think she is getting so fed up with having surgery and at the moment they are still talking about removing her stomach and doing more surgery on her spine. It is a very difficult time for her at the moment as she as got so much going on and her health is getting no better.

We have now got the date for Kirsty to see the doctor at Guy’s Hospital in London, which is at the end of September. It should have been at the beginning of September but we are away. Our GP is arranging for Kirsty to travel by ambulance so that she can lie down on the journey.

I would like to say a big thank you to everyone who has taken the time to write and send gifts to Kirsty as you have all been a big part of Kirsty’s life. Thank you for the lovely cards that she received this month, which were hand made and they were beautiful with a lot of work put into making them. Thank you for the letters and thanks to Viks (Post Pals) for the gift.

Update 13th August 2009

I just wanted to say a big thank you for the lovely pillow that I received yesterday. It came just at the right time as I had been at the hospital all morning over the sickness and it was waiting for me when I got in and really cheered me up.

My book is finished now and I have mentioned Post Pals in it and about all the good work you do. I have just got to try and find a publisher to publish it now.

Update 3rd August 2009

We have had a difficult month; Kirsty is still being sick and has been in a lot of pain with her back. I had to move Kirsty in with her gran, as John, her dad, came down with swine flu and we could not take the chance of Kirsty getting it. I have been spending as much time as I can with her, but it has made things very difficult.

Kirsty’s headaches have been getting really bad and her ear infection is not clearing up, so when she went back to our GP last Friday he took a swab of her ear, and to be on the safe side, is arranging for Kirsty to have a brain scan even though she had a brain scan in April. With NF things can change overnight and he does not want to take any chances.

We have now got the date for Kirsty to see the doctor at Guy’s Hospital in London, which is at the end of September. It should have been at the beginning of September but we are away. Our GP is arranging for Kirsty to travel by ambulance so that she can lie down on the journey.

Kirsty is having a very difficult time of it at the moment and must face the prospects of further surgery on her spine, knees, and now her stomach being removed. She could do with lots of continued TLC at the moment. She is in a lot of pain and feels worn out with keep being so sick. This sickness is really beginning to tell on her now.

Thank you for the lovely cards that she received this month, which were hand made and beautiful and a lot of work had gone into making them. Thank you for the lovely letters, which helped me with very difficult month. I would like to thank the people who sent me gifts this month; sorry I could not make the names out though.

Update 30th June 2009

Kirsty is still being sick after having any fluids or anything that is sloppy. The second lot of tablets made things much worse for Kirsty so her doctor stopped them and put her back on the first lot of tablets, which did help a little. Kirsty was very unwell when she went to see her GP last week so her GP is writing to the hospital to have her appointment brought forward and is also arranging for a different doctor to see her as soon as possible.

She is still waiting on a spinal scan and has been in a lot of pain in her back.

Even though Kirsty’s missed so much of her education due to being in hospital and attending hospital weekly, I am pleased to say she passed all her exams gaining Merit, Merit, Merit, which will now allow her to study Radio and TV production.

Thank you to everyone who sent Kirsty post this month, it is much appreciated.

Update 29th June 2009

Kirsty would like to say a big thank you to Becky and Cara for the lovely gifts that she’s received. As always, the gifts and letters that Kirsty receives really make her day.

Unfortunately the second lot of tablets have not helped with Kirsty’s sickness. Our GP as put Kirsty back on the first lot of tablets and is writing to the hospital to say that Kirsty needs her appointment bringing forward urgently. She is also asking for a different doctor to look at Kirsty and if this is not possible, our GP said she will send Kirsty to a different hospital.

She is having a difficult time of it at the moment and it’s looking as though she will have to have her stomach removed. Her spinal doctor is arranging for her to have a MRI scan of the spine so that he can plan how to do the surgery on her spine, which will be a very risky operation if Kirsty decides to go ahead with the surgery.

Post Pals has made a big difference in Kirsty’s life and she is in contact with so many lovely people due to Post Pals. Thank you for helping to keep that lovely smile on Kirsty’s face.

Update 7th June 2009

Kirsty wanted me to thank Becky for the lovely Bunny that she received as it really made her day. Kirsty loves soft toys and when they make a sound it brings a big smile to her face, which is really nice to see.

Kirsty is really having a bad time of it at the moment and has not been able to eat or drink anything for weeks now without being really sick after it. The tablets that the hospital doctor gave her are not helping so can I ask if you will please pray that these next lot of tablets will help, as these tablets are her last chance before they remove her stomach. I have said that I want a second opinion if things are still the same after this next lot of tablets and our GP who is really good agreed and she will arrange for Kirsty to see another doctor.

Thanks again to everyone who takes the time to write to Kirsty, she really is very grateful.

Update 29th May 2009

Kirsty is still being very sick after having any fluids or anything that is sloppy. The gastric test showed that Kirsty has a severe gastric emptying problem. Doctors are trying her on another tablet, which they want her to take for four weeks. If it helps she is to continue taking them for another four weeks and by then she will be seeing the doctor again. If after four weeks these tablets are not helping, she is to try this other tablet for four weeks. If things are still the same after trying these other tablets, the doctor is talking about the possibility that Kirsty will have to have her stomach removed. The doctor said Kirsty has so many tumours in her tummy that it is making things worse and that they could not possibly remove all the tumous.

She is doing well in the back brace and we are now waiting for more MRI scans of her spine before Kirsty decides about another spinal operation.

Kirsty was on Channel M this week talking about her next fund raising event which all her ambulance drivers and other medical staff are getting involved with.

I would like to say a big thank you to everyone who has taken the time to write and send gifts to Kirsty. Kirsty is having a very difficult time of it at the moment and must face the prospects of further surgery on her spine, knees, and now her stomach. She could do with lots of continued TLC at the moment. She is in a lot of pain and feels worn out with being so sick. Thank you for the lovely cards that she received this month, so many of them were hand made and they were beautiful. Also, thank you to everyone who very kindly sent letters and gifts this month. Kirsty has managed to write and thank everyone.

Update 25th May 2009

Kirsty is on the Channel M news on Tuesday talking about her next fund raising event which is a spookathon (staying in a haunted house over night). Many of her ambulance drivers who take her to hospital every week and other medical staff involved in her care are doing it with her.

Kirsty is still being sick everytime she has a drink. We are just hoping that these new tablets will help and that she does not have to have her stomach removed. Her NF doctor is phoning us on Wednesday to have a chat over the tumours that were found in her tummy. Kirsty is not letting any of this last lot of news get her down and is trying to cope the best way she can.

Update 20th May 2009

Well, we are back from the hospital after seeing the doctor for the results of Kirsty’s gastric emptying study. Unfortunately we did not get the news we hopped for.

The doctor said that Kirsty has a severe form of gastric emptying and that the food is not moving as fast as it should, which is why she is being so sick. On top of that they said she has so many tumours in her tummy that they are not sure if any of them are on a particular nerve that is making things worse. They are putting her on Erythromycin for four weeks and if they help she will have to get some more for another four weeks. If things are still the same after four weeks, she is to stop taking them and try this other tablet for another four weeks (can’t remember what it was called). She goes back in 8 weeks and if things are still the same they will try hypnotherapy. If that does not help she may have to have her stomach removed.

They are running out of medication to try, which is why they think the tumours may be making things worse. The NF doctor said that Kirsty has a very severe form of NF internally and that she may be a one off case with her NF being so bad.

So I am a little upset by it all at the moment. I just wish we could get some good news for a change.

Update 30th April 2009

Kirsty is still poorly and spent over four weeks in hospital being very sick. The sickness is no better so she is having a gastric emptying study done tomorrow. The doctors did a scan on her tummy while she was in hospital and found some new tumours in there. Another doctor is going to look to see if any of the new tumours are pressing on a nerve that is making her so sick.

She is now in her new back brace and will continue to wear the brace until it’s decided if surgery on her spine should go ahead.

We also saw the doctor over the tumours in her knees last week and he told us that Kirsty has so many tumours in her knees it would be impossible to try and remove them all. He wants her to have another PET scan done so that he can see the tumours in more detail.

On a good note, Kirsty was nominated for the Young Citizen award by the Rotary club and was one of the five winners. She received her award last Saturday in Edinburgh, which was filmed live on BBC 24. This can be seen again over the Bank Holiday weekend on BBC 24. Kirsty is also in the Woman’s Own Magazine on Tuesday.

I would like to say a big thank you to everyone who has taken the time to write and send gifts to Kirsty. You have all been a big part of Kirsty’s life and have helped put a smile back on her face during some very difficult times.

Kirsty is having a very difficult time of it at the moment and must face the prospects of further surgery on her spine and knees so she could do with lots of continued TLC at the moment. She is in a lot of pain and feels worn out with keep being so sick.

From Kirsty: Thank you for the lovely cards that I received this month as they really do help. I received so many get well, Easter and birthday cards that the postman said his bag was full of my post. Thank you to everyone who took the time to write to me as these letters really helped me over some very difficult times this month. I’d also like to thank everyone who very kindly sent me gifts this month. I received some really nice soft toys, card making sets, cup, Mr egg growing kit, friendship bracelet and other gifts. A big thank you to Post Pals, Becky, Mrs Ball and whoever it was that sent me the other gifts.

Update 23rd April 2009

Kirsty just wanted to say a big thank you for the growing egg which she received. She is going to take a picture when it starts to grow.

Look out for Kirsty on the BBC News tomorrow (Friday) as they came to film her while she was in hospital last week and you may see the birthday or get well card that you sent her. She is also on BBC News at 11.30am on Saturday which goes out live (young citizen awards).

Kirsty is still being very sick so we are just hoping she will be ok.

Update 16th April 2009

Just a quick note to let you all know that Kirsty is now home. She is still being very sick after eating and drinking but has been sent home with more tests to follow in the next week. If things continue she will have to go back in next week.

Look out for Kirsty on the BBC News one day next week as they came into hospital to film her. You may even see one of the cards you have sent her while she’s been in hospital. She is also in the Woman’s Own magazine on the 28th April.

Update 14th April 2009

Kirsty is still in hospital and continues to be very sick after eating and drinking. She is now feeling very worn out by it all and in pain in her tummy and very tired. I have contacted the NF doctor to ask if she can come up with any suggestions as to what is wrong with her, but Kirsty really does not look very well at the moment.

Update 8th April 2009

Kirsty is still in hospital and things are no better. She is still vomiting over a 1000ml a day back.

The MRI scan of the tummy that she had showed more tumours in the tummy than the ultrasound scan showed. We are seeing the doctor tomorrow to talk about what steps to take next. They are also in talks with Kirsty’s NF doctor to see if one of these new tumours may be growing on a nerve that is making her sick.

Kirsty asked me to thank everyone who very kindly sent her birthday cards, birthday gifts and get well cards. You have made her stay in hospital so much easer.

Update 4th April 2009

Kirsty is no better and still being very sick, which means she will be spending her birthday in hospital yet again. She had a brain scan Thursday which was good news as they said nothing found to worry about. The next plan is to do an MRI scan of her tummy on Monday and see if any tumours are growing in the tummy.

It’s Kirsty’s birthday tomorrow. She’s received lots of cards to open from Post Pals and I would like to say thank you to everyone who took the time to send Kirsty a card.

Update 2nd April 2009

Kirsty is no better and is still being very sick after having anything to eat or drink. Kirsty’s consultant came round this afternoon while I was with Kirsty and after seeing how sick Kirsty was still being, she arranged for Kirsty to have a brain scan, which was done within minutes of seeing the doctor. The doctor also wants Kirsty to have an MRI scan of her tummy, which should be tomorrow or early next week. We have not had the results of the brain scan given to us yet.

By the time I had left Kirsty this evening Kirsty had vomited over 1000ml, so this will give you an idea how sick Kirsty is being.

Update 1st April 2009

Kirsty had the ultrasound scan today and the result showed that she had new tumours in the stomach muscle which were 21.1mm, some at 14mm and some at 6mm that were not in the muscle. Her other organs look to be working ok. They don’t think these new tumours are the cause for her being sick.

They will talk about more tests tomorrow. She is still being very sick after eating and drinking. So no change really.

Update 31st March 2009

Kirsty’s having a bad time of it at the moment and is in hospital and not very well. She’s been in hospital two weeks now and there’s no improvement in her condition. She is not keeping any food or fluids down and keeps being sick whatever she has. Doctors did a camera into her tummy yesterday which showed inflammation, so they took a biopsy and are now waiting results. Tomorrow she is having a scan of the tummy and depending on the results the next step is for her to have a brain scan. So it looks like Kirsty will be spending another birthday in hospital.

We saw Kirsty’s spinal doctor at the beginning of the month and unfortunately things have got worse with her spine. She is to go back in the back brace, which we get next week, and her spinal doctor wants Kirsty to think about having further spinal surgery where he will take the rods all the way to the top. This operation comes with many risks as Kirsty’s spine is covered in tumours. He would have to operate from the back and then turn her over and operate from the chest, which would mean moving many of her organs. He wants Kirsty to let him know in May if she will have the surgery.

She also saw a doctor over the tumours in her knee and he feels he can’t do anything to help so wants her to see this other doctor. We go to see them next month.

The doctor in London wants to see Kirsty in person (we hoped she would do a video link) so we’re just waiting on the appointment at the moment.

Kirsty really has had a bad month and could do with lots of hugs.

On a good note, Kirsty was in the Daily Mirror http://www.mirror.co.uk/life-style/2009/03/17/years-of-pain-but-neurofibromatosis-sufferer-kirsty-ashton-just-wants-to-help-our-kids-115875-21203662/. She had a great time having her make-up done and trying on all the different clothes.

Kirsty says thank you for the lovely cards that she received this month and thank you to everyone that who took the time to write to her as it really does help. Thank you to fellow Post Pal Aisha for the lovely card that she sent. Kirsty also received a lovely cushion made by the stitch of love and kindness, a lovely teddy, some finger puppets and a craft set. These items have really helped to cheer Kirsty up while she’s been in hospital and she would like to thank everyone who thought of her.

Update 28th March 2009

Things are no better for Kirsty. She is still in hospital and looks like she will be spending another birthday in there.

Thank you to whoever sent Kirsty the teddy. We all know how much Kirsty likes her soft toys and even more so when they do something. The teddy really cheered her up.

We took her to the hospital shop in her chair to see if she wanted anything and she picked a small cake, but yet again it just came back up.

I will update when we have more news.

Update 24th March 2009

I’m just back from the hospital and things are still the same with Kirsty. She is still being sick and is having a scan of her tummy done tomorrow. They did a scan on her heart today as her BP is really low but that came back ok. They injected a strong anti sickness drug via her drip but even that’s not stopping the sickness.

I will keep you informed of what is going on with Kirsty. Thank you to all who have sent Kirsty good wishes.

Update 22nd March 2009

Kirsty was taken into hospital today. They are running tests and talking about doing a brain scan and camera into the tummy. They have put her on a drip to try and get some fluid into her. She is not very well at the moment and is upset because it’s Mother’s Day.

Update 17th March 2008

Kirsty was in the Daily Mirror today and they did a full page spread centre page. The link is http://www.mirror.co.uk/life-style/2009/03/17/years-of-pain-but-neurofibromatosis-sufferer-kirsty-ashton-just-wants-to-help-our-kids-115875-21203662/

Update 7th March 2009

Kirsty saw her spinal doctor on Monday and NF doctor on Thursday due to her having some worrying symptoms.

I am sorry to say they did not go our way. The doctor told Kirsty she needs more surgery on her spine, she is back in the back brace to help with the pain and he wants to take the rods all the way up to the top of her spine. There are lots of risks involved due to the amount of tumours on her spine; she has at least one tumour on every nerve on her spine. If Kirsty agrees to have the operation he will have to go in from both her back and turn her over and go in again from the chest, which would mean moving many of her organs. He asked her to think about it and to let him know in May.

On seeing her NF doctor, things were very much the same and she was having a meeting with the doctor in London to talk about Kirsty’s situation. Her NF doctor said in her 25 years of working with NF she’s only seen one other person with so many tumours on their spine and that person was much older.

You can imagine Kirsty could do with lots of Tender Loving Care at the moment. She would like to say thank you to Mrs Ball, Becky Butler and Post Pals for being there for her.

Update 1st February 2009

Kirsty is still attending hospital weekly and we have a busy month ahead with other hospital appointments.

Kirsty’s operation went well and they managed to remove all five of the tumours, but she is still in some pain from the surgery.

I had to take her to the children’s hospital this week to see the doctor over the tumour that is growing behind her knee. It is getting bigger and making it impossible for Kirsty to wear her knee braces without a lot of pain. He said that it was important that she wore them to keep her knees stable and that on the last scan one of the tumours in her knee was over 3.5 cm with lots of small tumours going round it. He’s now decided to send her to see this other doctor as he does not know how best to remove this type of tumour. I just wish he would have done this 16 months ago if he knew then he was not able to do the operation.

Kirsty’s trip to London to film Noel’s HQ went well and if anyone missed it they can still watch it by visiting kirsty’s web page www.kirstysstory.co.uk and clicking on the picture of Kirsty with Ricky Whittle. A small clip of Kirsty was also on Noel’s HQ again this week.

Kirsty still needs some TLC as she has got surgery ahead of her and she is worried about her Gran who is also just out of hospital.

I have to take her to see the spinal doctor in a few weeks when we will find out if more surgery will be needed.

Thank you for the lovely cards that I received this month as they really do help. Thanks also to Mrs Ball for her letter. Thank you for the lovely biscuits and large balloon that I received when I came out of hospital, they really cheered me up as I had been in some pain and these made me smile.

I would like to say a big thank you to every one who has taken the time to write and send gifts to Kirsty, you have all been a big part of Kirsty’s life and have helped put a smile back on her face during some very difficult times.

Update 13th January 2009

Kirsty is going to be on Noel’s HQ on Sky1 on Saturday night at 7.30pm (virgin 121, Sky 106 and HD 170). We are going to London on Friday until Sunday so that we can take it easy with Kirsty, as she’s been in a lot of pain with her back, so much so that it’s resulted in having to wear her back brace to try and help with the pain.

She is also in the Sun morning paper either tomorrow, Thursday, Friday or Saturday (they have not given me a date yet, just that it will be one of those days). She is also in the Daily Mail on Saturday i think.

Kirsty goes in to hospital next week for more surgery, but fingers crossed she will only be in overnight. Kirsty could really do with some TLC at the moment.

Update 31st December 2008

Kirsty is still attending hospital weekly, and will be going into hospital on the 20^th January for more surgery. She needs to have four tumours removed from her tummy, groin and leg, so she could do with some TLC. We are yet to see the doctor in London and find out if going to the USA will be of any help to Kirsty. NF can be a very cruel condition, as we are finding out with Kirsty, and the older she gets the more she knows about the test, which makes things more difficult. When she was younger she did not really understand what was going on, only that she was in hospital, which she loved at the time.

On a good note, Kirsty won the Community Award and was named the Young Citizen of the Year. She also won an overall runner up award and was given a special Commendation Award. You can see some pictures from the awards night on her web site www.kirstysstory.co.uk and for any Hollyoak fans, Kirsty just had a part in Hollyoaks, which will be on screen the end of January. I will try and let you all know when we get the date. You can also see Kirsty on Noel’s HQ, which is on Sky1 on the 17^th or 24^th January.

Kirsty received some lovely hand made Christmas cards this month and would like to say a big thank you to everyone for taking the time to think of her. You are really kind. Thanks to Mrs Ball and Becky for the letters too. Thank you to Tara her Elf, Mrs Ball, Kate Dee, Becky Butler and Susanna Wild for the lovely gifts that you very kindly sent – Kirsty loved each and every one of them. She has not been well the past few weeks and these gifts really cheered her up, thank you. I hope you all have a great 2009!

I would like to say a big thank you to every one who has taken the time to write and send gifts to Kirsty in 2008. You have all been a big part of Kirsty’s life and have helped put a smile back on her face during some very difficult times.

Update 28th November 2008

Kirsty is still attending hospital weekly and they have now found another problem with her feet which is due to the tumours pressing on the nerves.

Kirsty should be having an operation in December to remove four tumours, but we are hoping they will leave it until after Christmas now.

Kirsty will see our family doctor next week, when she will get the results of the echo scan and the blood test she had last week to see if she is still anemic.

On a good note, Kirsty is in the finals for the Manchester Community Award to be named Manchester’s fund raiser of the year. Please keep your fingers crossed. We find out the result on the 10^th December when we attend the awards.

I received some lovely cards from abroad this month and would like to say a big thank you to everyone for taking the time to think of me, you are really kind. Thank you to Becky Butler, all the children at St Matthews Sunday school, and Kate Dee. Thanks also to Viks for the lovely purse.

Hope you all have a great Christmas and a big thank you to the team at Post Pals and to everyone you has kindly taken the time to write or send gifts to Kirsty this year – you really have helped during some very difficult times.

Update 1st November 2008

Kirsty is still attending hospital weekly and on a recent visit to the hospital to see one of her doctors they said she would benefit from having the tumors removed from her tummy, chest wall and top of her leg. This will be done before Christmas.

Kirsty was also getting very tired and more breathless and after seeing our family doctor who ordered blood tests, Kirsty was found to be very anemic and is now on iron tablets. The doctor also wants her to have an echo scan done as her breathing was very fast when the doctor listened to her chest.

At the moment she is looking forward to Christmas and I’m sure santa will be good to her this year as she’s been really good about all her hospital visits and tests that she keeps having.

Thank you for all my post. I received some great DVD’s and CD’s with some other bits and bobs which really cheered me up, but there was no name, so if the person who sent them is reading this, thank you very much as I really loved them.

Update 28th September 2008

Things are still very much the same with Kirsty and September was another very busy month for her with hospital visits. We find out next week if Kirsty will need to have some more tumours removed that are giving her some pain in her tummy.

Thank you to Becky Butler and Mrs Ball for her post.

Update 16th September 2008

Things have got worse for Kirsty. We saw her NF doctor this week and she said that Kirsty’s foot drop had worsened and that every time they scan parts of Kirsty’s body they find more tumours. She also said that in her 20 years of dealing with NF, she has never seen anyone affected so badly internally by it. We now have to take her to see a doctor in London and depending what this doctor says we may have to take her over to the USA to see a doctor. So it is a very worrying time at the moment. Hospital visits are still weekly and she could do with some TLC at the moment.

On a good note, her face is up in lights along Blackpool front as part of the Blackpool lights.

Update 31st July 2008

I’d like to say a big thank you to Becky for the lovely gift and to all who took the time to write and send me cards this month.

I am still attending the hospital weekly as the pain in my back has been really bad. I did do a six week pain treatment course but it did not really help. The doctor thinks one of the screws may have split and moved away from the spine at the top slightly.

On a good note, mum and I spent three days in Washington DC where I was representing the UK in the Huggable Bear Hero Award. I did a photo shoot and will be in the 2009 build a bear calendar in November.

I was also nominated for the Manchester Hero Award by people that had read about me in the press and was one of the 25 winners. This week I also won the Charles Austin Vocational Service Award after I was nominated by the Rotary Club. So it’s been a busy month!

Update 1st July 2008

Things are still very much the same with Kirsty and June was another very busy month for her with hospital visits. The new pain treatment is to continue for a few more weeks but she is still getting a lot of pain in her back.

Kirsty took her driving test last week and passed, so the following day she took her pass plus test and passed that too! She cannot afford a car yet so will not be on the road just yet.

Kirsty and I are going to Washington DC on Tuesday as Kirsty was voted the Huggable Bear Hero Award for the UK. We now have to go to Washington DC for four days in order for her to receive her award and meet the other 11 winners from around the Globe. Kirsty will be doing a photo shoot whilst she is there for the 2009 calendar.

Update 29th May 2008

Things are still very much the same with Kirsty and May was another very busy month for her with hospital visits.

Kirsty’s also had a few falls and had to be taken to the A/E department due to the pain in her back.

Kirsty has now got to start going to the hospital at least twice every week for some new treatment that they want to try for the pain and her physio’ will continue every week too.

She is still enjoying her driving lessons and is taking her test very soon.

Thank you to Becky Butler, Mrs Ball, and also Kate Dee for your lovely letter. Thank you to Post Pals for the recent gifts that I have received – I love my teddy and I will take him with me when I go for my PET scan next week.

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 lack 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.

Story written 2005

Kayley was diagnosed with cystic fibrosis when she was 1 week old. When Kayley was 48 hours old, doctors at her hospital had to give her a life saving bowel operation (Meconium ileus) as her bowel was at bursting point. It was from having this that the doctors went on to test her for CF which came back positive. Kayley was in the intensive care unit for 4 weeks during which she was recovering quickly.

When Kayley was 6 weeks old I took her for a routine check up at the clinic and I was told she had a slight chest infection. Kayley was admitted immediately for 2 weeks IV’s. Whilst Kayley was in hospital she picked up Bronchiolitis which left her so ill she was deteriorating very quickly and nothing that the doctors seemed to do would work. They recommended that Kayley be christened straight away; this happened at 7pm that same night.

Kayley was so ill she could not be moved to intensive care, so the much needed machines were brought from intensive care to Kayley’s ward, where she lay ill for 4 months. Once she turned the corner she seemed to bounce back and it was lovely to have her at home.

When she was 1 she had her Potacath Gastrostomy button put in her tummy. A few months later, during all of this, Kayley was admitted loads of times for IV’s due to recurrent chest infections.

Kayley has fought off septicaemia 3 times. She has had numerous Potacath infections, that is why she is now on her 5th Potacath and this is situated in her groin. She has also fought off a really severe case of Glandular Fever as well as Pneumonia.

Kayley is now on the active transplant waiting list for a new heart/lungs, she has been waiting since August 04. We have just come back from London as Kayley won the New Life award it was a really special night for her and I was so proud of her.

Currently Kayley is ill again, and she is back in hospital. Her time at home seems to get shorter; she was only home for 2 weeks before this admission. It’s been like that now for about her last 9 admissions but she doesn’t let it get her down. Although she gets depressed quite a lot she hides it with her smile.

Update 1st April 2006

Kayley has been very poorly in hospital. She has Cystic Fibrosis and is 5 months post transplant. She has just recently been diagnosed with Diabetes too. She is in hospital at the moment and we are still awaiting further blood tests.

We think Post Pals are wonderful, they have brightened up Kayley’s darkest says. Thanks to everyone who has sent letters and parcels to Kayley in the past.

Update 27th March 2006

Kayley is back on the Current Pal list as she is in hospital.

An update from her Mum;

We are still not 100% sure as to exactly what is going on with her, we are still awaiting all different test results to come through. They say that she has more than likely developed diabetes, and that there are problems with her kidneys. Her anti-rejection levels are also very high and her white blood cell count is really low. She has been in hospital since Friday where she is receiving IV antibiotics and drip fluids; she has also been getting excruciating stomach pains.

Update January 2006

I have placed Kayley on the “moved on” page due to lack of contact from her family, we are told that Kayley is doing well health wise though. Thank you to all those who took the time to support Kayley.

Update 22nd October 2005

Kayley is going home today!

Update 13th October 2005

Kayley has had some set backs the past week with temperatures and choking, which turned out to be a slight infection rather than rejection. She is due to have another biopsy next week.

Update 7th October 2005

Kayley is doing well she had a little set back the other night but she seems to have picked back up and she is a lot better now.

Update 5th October 2005

Kayley has come out of theatre and she is now awake. she is fine and her new lungs have been cleaned and had a biopsy (to check for rejection)

Her mum said she has colour in her cheeks for the first time, and the rings under her eyes have gone, she has been moved onto a normal ward (Ladybird), and has her appetite back.

Update 2nd October 2005

Kayley has had a chest drain taken out and is doing really really well…. the first things she said when she came round the first time were “I want some lucozade” & “I want me knickers on”.

Update 1st October 2005

Kayley is now awake. She is eating and drinking and has also been walking around the ward.

Update 27th September 2005

Written by Leanne;

The operation went OK but she’s not out of the woods yet. Kayley will be under sedation for two weeks now because if she came to the pain would be too much for her all at once. They are saying that the next 24 hours are vital; her body needs to accept the new organs. We’re praying harder than ever that she can pull through.

Update 26th September 2005

Last week we received a lovely email from Kayley saying how much she like the cards and gifts she has been sent, and that they have made her very happy, I didn’t get around to updating this page and we have just heard that Kayley had her transplant last night!! She got the call and was transferred to Great Ormond Street, she has come through the surgery, but the next 24 hours are critical. I will update when I hear any news, or speak to Kayley’s mum.

Update 17th September 2005

Will you let people know that Kayley is on the mend now and thank everyone who sent her cards and emails for me please.

Update 15th September 2005

Kayley has been diagnosed with Aspergillus, which matty also developed (and caused him a lot of problems). They are also doing more bloods and cultures to see if she has a port infection.

Update 13th September 2005

Kayley is back in hospital again. She is really unwell her resps are really high and her breathing is very fast, she is also a terrible colour, I am really worried about her.

Update 15th August 2005

The other day Kayley was allowed to leave the hospital for a while, to be a DJ for her local radio station!

Kayley came out of hospital earlier on tonight (sunday) so we are off to devon cliffs for 12 days.

Update 3rd August 2005

Despite Kayley’s big night (staring on a TV program), during the morning she did some filming and was in the news, and in the afternoon attended clinic and was admitted as she has lost 4 and half pounds in 2 weeks.  If you watched the program please be sure to drop her an email to say you watched.

Update 14th July 2005

Kayley was able to come home last saturday afternoon, she went into school on monday for the first time since before easter and today she is actually doing her very first sports day.

Update 29th June 2005

Kayley has been really ill in hospital. Her weight has dropped just below 3 stone now, but the good news is that she’s on the mend. She is such a strong minded little girl who keeps on fighting.

Story written 2005

Karah was diagnosed with Asthma at 6 months of age. She was given inhalers to take all the time, also steroids on occasions.

Then one year when Karah was about 7 she came down with pneumonia. Karah is 12 now and has pneumonia almost annually. Her Asthma quite often develops into chest infections, which develops into pneumonia. She has a constant infection called Haemophilus, which is proving very hard to cure.

She is under the care of numerous specialists and is due to go into a hospital in Southampton to be monitored and treated 24/7.

She is in hospital frequently and most recently she had an escorted emergency into hospital while we were on holiday. That was very frightening one minute you think her condition is improving and the next she has a very severe attack. We have a nebuliser at home and a physiotherapy breathing machine. She has to have a wheelchair on shopping trips now. We have to be in and out of a shop because Karah also has epilepsy therefore cannot stand the lights in shops. The epilepsy was only diagnosed in September 04. She takes medication for this as well.

Karah has home tuition 3 times a week as she cannot manage full time school. Unfortunately she has lost touch with a lot of her friends because they can’t handle her illnesses or in case she has an attack. She gets very bored. We go out as much as possible with her younger brother but are limited to where we go. She likes to participate in outdoor activities but struggles and quite often sits on the sidelines. This upsets Karah.

Whilst on holiday in Devon, Karah went horse riding. She absolutely loved it. So we are looking for a horse riding school near home. When I read about your Post Pals site I thought what a good idea, Karah can actually talk to people in the same sort of situation that understand what it is like to live with an illness. As we speak we are awaiting a date for when Karah next is being admitted into hospital.

Update 20th November 2007

Karah had an appointment yesterday at the hospital. She is going to be admitted next week sometime for a couple of days initially. If her SATS are bad and carbon is high in her body, she will be transferred to Southampton respiratory unit. Last night she had a really bad attack and i had to take her to casualty where she had a nebuliser and oxygen. She has had a really bad pain under her ribs on the left and a burning stabbing pain in her left shoulder and the doctor said she has pleurisy. She is home for now and we are just waiting for the specialist to ring with a bed for her. In the meantime, if she has another attack and is ill at all today, i have to take her back. It’s now lunchtime and she is still in bed and i’m letting her sleep as much as possible.

I hope all of you are well and looking forward to the holidays.

Update 2nd November 2007

Karah won’t be going until Bureseldon House until after Christmas now.

Update 30th September 2007

We are still awaiting a date for Karah’s admission to Burseldon House which has been talked about on and off the past few years. We are hoping it is soon.

Karah, her brother and sister are all in the St Johns Ambulance Brigade and we all love it.

Update 10th September 2007

Karah will hopefully be starting a part time college course in photography in January. She loves anything to do with photography!

Update 30th July 2007

Thank you to everyone who have sent Karah gifts and letters, she loves getting them.

Update 2nd July 2007

Karah is continuing to have chest infections. She was absent from her lessons, which she has in the library, for about a month. She had only been back a week when she picked up another infection. The specialist has increased her epilepsy meds because she is having absences still and she has to have another EEG. Karah had a hospital appointment on the 18^th of June and was kept in all day for x-rays, ECG and blood tests. She was very brave as she hates needles, but in the end she wouldn’t let me go in the room with her to have it done, so she was really brave. The amount of times we have had to leave hospitals until she has calmed down.

I would like to take this opportunity to thank everyone, especially Kate, for all the post. I know Kate is ill too, so thank you very much for making the effort. Good luck.

Update 4th June 2007

I have lost count of the amount of posty Karah has received this month so i would like to say thank you to everyone that has sent something. Thanks for the postcards too.

Update 10th May 2007

We came out of Southampton hospital with Karah today. Well, you know when they say trust your mothering instincts? Mum knows best! I have been telling the doctors for years that Karah stops breathing in the night. Now it has been proved. The machines were bleeping every few minutes. Every time she dozed off they would bleep. Sats should normally be above 96 and Karah’s were between 89 and 93 all night. Her pulse should be 80-90 and it was going from 65 to 115 and that was on a good night. So, we have to wait until the doctor writes to us to see what to do about it. We came back home worn out.

Update 2nd May 2007

Karah is still having the chest infections and ear infections. She is going into Southampton hospital on 9th may, initially overnight. The doctor thinks she is stopping breathing. She can’t walk far without discomfort and is out of breath a lot. She sleeps quite a lot and doesn’t have much of an appetite. When she does have an appetite, it’s usually for junk food. She has different cravings on a weekly basis.

We are still battling with the different NHS counties on who is going to pay for her to go to Burseldon house. Both Poole and Southampton are appealing against last year’s decision which was Poole not funding it. So, we are still waiting to hear. It is vitally important that she goes to Burseldon house, because as there doesn’t seem to be a cure for Karah, she needs to learn to cope with it and try and live a normal a life as possible.

Karina is under the same specialist as Karah now for her asthma and migraines; she is also a very anxious little girl and is seeing a counselor. It would be nice to take them all away for a while but we need to stay near a hospital.

Thank you to everyone for sending posty to all of my children. They loved the valentines’ cards they got.

Karah is really into photography and is going to be doing a couple of hours work experience at a photographers. She is getting into Tarot card reading and is quite good at it.

Update 12th April 2007

Karah had appointment at Southampton hospital today. The doctor wants her to be admitted to Southampton as soon as possible, hopefully within the next 2 weeks. Karah’s breathing is stopping during the night which in turn zaps her whole energy throughout the day. She is having difficulty catching her breath all the time.  She has had 4 lots of steroids this year already and numerous antibiotics. Although the steroids help her to breathe, they do make her put a lot of weight on unfortunately. She has had her epilepsy medication increased and uses a wheelchair quite a bit. We are currently trying to get a bigger house or bungalow so life is easier for Karah. She gets so out of breath going up the stairs.

I would like to thank everyone for the post they have been sending to my children, they love getting their very own post.

I am sorry to hear about the children that have lost their battles with life. I feel so sorry for their families. I’m sure their little angels were sent here to touch the lives of their families and bring joy to them for the little time they were here. They will be looking down on their loved ones and are still very much around them. God bless them all.

Update 15th January 2007

Karah has a chest infection that she has had since before Christmas, as has Karina. Karina hasn’t been to school since November, and Karah hasn’t had her home tutor since then either. We actually had to take Karah and Karina to A&E last night because of their breathing and they have been put on more antibiotics and steroids. Kieran has been on steroids too but is much better.

Thank you to everyone for all of your kind letters, cards and gifts and for not leaving Karina and Kieran out. I really thank you for that.

Happy new year to you all and i hope it’s a healthier one for everyone.

Update 22nd September 2006

We are still waiting to hear when Karah is going into Burseldon House in Southampton hospital. She has been put on montelucast for the asthma so we will see if this helps. Karah isn’t very well again; she still has an infection that she has had since February. She is 14 now and is a typical stroppy teenager!

Thank you so much to you all for sending Karah, Karina and Kieran post, it really cheers them up.

Update 6th June 2006

Thanks again to everyone for Karah’s posty this month. We have just been on holiday for a week to Weymouth, it was great, although the kids wanted to spend money all the time! Karah has a continuous chest infection I feel so sorry for her.

Take care all of you, from Karen (Karah’s mum)

Update 5th May 2006

Karah is struggling a bit at the moment she has ear infection and her chest is brewing for another infection. So she hasn’t been to school lately. There is a lot of pressure at the moment because it’s her options year at school, but because she only goes to school for 2 hours a day when she can I have to try and organize things to teach her at home.

Apart from that the doctor at Southampton is trying to get Karah into a hospital where she can be monitored 24/7 for a while. So we are waiting to hear about that.

Thank you everyone for sending Karah letters and cards and gifts almost daily. She is so chuffed when she gets things just for her in the post.

Thank you, love to you all, Karen.

Update 31st March 2006

I just want to say thank you to everyone that has sent Karah cards and gifts and especially post cards. She is getting something almost on a daily basis. Also thank you to those who are sending things to my other two children. They are so good and understanding when it comes to Karah’s illnesses, they just sort of get on with it. We go to hospital equipped with food and toys to keep them occupied. They know we can’t really do the things that most children do and with Karah being in and out of hospital lately it’s just as well they are laid back. Don’t get me wrong they all fight like cats and dogs though! They both have asthma too and are migraine sufferers. Karina has to have an MRI next week because the medication for the migraines isn’t working too well. However I expect she will take it in her stride as usual.

Karah is on more medication including horrible steroids for the chest infection, so isn’t feeling too good still. The damp weather doesn’t help. If she could fly I would take her to a warmer climate for a while. We have a hospital appointment everyday next week except Tuesday, so I need to keep everyone entertained. Especially as it’s the Easter holidays.

Karah is having fun making cards (truth be known so am i) and loves reading, she is into “Charmed” at the moment, the 3 witches. She also loves watching “The Bill” which she watches on tv gold. She also likes make up. I don’t often wear it so she can’t pinch mine; therefore I have to buy hers for her.

Thanks to you all.

Update 7th March 2006

The steroids she has been on don’t seem to have worked that well. She now has a severe chest infection and has to have regular nebulisers, so I’m afraid we have been backwards and forwards to hospital and the doctors for a while again.

My mum has got her into knitting so they are having a race now (shhh but I think my mum is winning) you can’t talk to Karah or watch her while she is knitting though, it’s so funny. She sort of growls if she catches you watching.

Anyway thank you to everyone that is thinking of her, it cheers her up no end when she gets posty.

Update 28th February 2006

Karah has been put back on steroids at the moment, and is very tired all the time, her epilepsy is more noticeable but I think that’s because she is tired. She was doing really well going to school for 2 hours a day, but has had enough for a little while until she picks up again. Thank you everyone for your posty, she waits for the postman to come every morning. It really perks her up when she gets really lovely cards that people have made themselves, Karah has made a couple herself and they’re good :o) She has got a letter or card almost daily this month, so thank you everyone.

Karah got a huge box of Christmas presents from her post pal Karen, thank you Karen so much for all the presents. Karah was so chuffed and exited she couldn’t wait to open the box!

Update 31st January 2006

Thank you to everyone that sent all of my children cards and presents. It made Christmas very special. Thank you. Karah received lots of presents and cards and is still getting lots of cards and letters, at least 3 days a week.

Karah has unfortunately had chest infection on top of chest infection and has only just managed 2 hours at school this year. She has also given me the flu so I am not happy at the moment! Never mind, at least I can empathise a little bit with Karah.

Update 28th November 2005

Karah has been to the Doctors 3 times in a week with one infection after another.

She is getting lots of posty again and emails. Thanks to everyone for taking time out of your busy lives to write to Karah. Also to the people who write to Karina and Kieran – they love getting post, Thank you.

Update 22nd November 2005

Karah isnt very well, she hasnt been well for a few weeks now. She has seen the doctor 3 times in the last week. She is feeling so sick with all the stuff on her chest and medication.

Update 9th November 2005

Karah doesn’t seem to have been getting many cards or letters at the moment.

She isn’t very well again she managed a few hours at school last week but she exhausted herself. She has a throat infection and is having more absences. Karah is also having quite severe headaches and is sometimes sick. She is a bit chirpier today however and hopefully she will get over this bout of infection quickly.

Update 18th October 2005

Karah had a check up today. Unfortunately it didn’t go to plan. I thought Karah was a bit better after the last chest infection. She had been quiet for a few days, which you think I should have realised by now that isn’t a good sign for Karah. The Dr did a lung function test and it wasn’t very good, Dr needs to increase all of her inhalers and antibiotics and she needs more regular checkups. She is also still having fits (absences) despite being on a high dose of epilim. She has really bad headaches and the specialist thinks it might be the epilepsy causing this. So we have to count the fits for the next 3 month and then she will have another EEG then a blood test (which Karah is absolutely terrified about) and then probably increase epilim. She has been put on more medication for the headaches now which actually gave her a good nights sleep last night (infact she is still in bed as I am writing this, lazy bones). She isn’t well enough for school at this present time, but she does try to go in for a couple of hours a week. She is ok everyone, she is quite a happy little girl, a long as she is spending my money that is! Anyway keep those letters and cards coming and emails they really cheer her up. God bless you all, signing out, Karen.

Update 26th September 2005

Thank you to everyone who sent Karah birthday cards and presents, it was like Christmas for her, thank you!

You have brought sunshine into my daughter’s life, thank you. She is so happy that she gets lots of post, it really cheers her up. You’ve been sending mail to my other two children who have asthma as well. Karina and Kieran are so pleased to receive posty. I even got some posty myself from someone from post pals, it really cheered me up too. THANK YOU so much everyone.

Karah is still suffering with chronic chest infections and ear infection and upper respiratory infections. She has quite a lot of hospital visits, which she hates. She has suffered all summer and will now it’s getting on for winter, which is Karah’s worst time of year. She is quite a happy child or sorry teenager (you know attitude, teenage tantrums).

She has home tuition everyday, but does try to get into school as much as she can. Unfortunately she picks up bugs as soon as she goes.

She is a lovely girl though, but a lot people look at Karah and see she looks ok. They forget that she has needed so much medication before she even set out of the door.

Anyway, she is looking forward to Christmas and wants everything, and I mean everything. Oh no I’m going to need a bank loan!!

Take care everyone,

Karen (Karah’s mum)

Update 25th September 2005

Karah is home now, she was only kept in for about 6 hours. I have equipment at home to help Karah when she has an attack but this one just crept up on us.  We had to call the dr out the next day (monday) she wasn’t very well still but she is feeling a bit better today.

Update 19th September 2005

Just thought i would let you know that Karah was taken into hospital last night.
She had an asthma attack followed by a panic attack. She has an upper respiratory tract infection and is feeling really sorry for herself today.

Update 16th September 2005

Karah is receiving a lot of emails from very kind people and I would just like to say thank you very very much. I have read them to Karah but she cannot reply to them at the moment she is quite poorly. She has needed a nebuliser a couple of times today and is in a bit of pain with her chest but she has some friends round at the moment and they are all singing in the kareoke.  So we are not ignoring any of you and I hope you keep sending kind messages. Karina has been off school with an ear infection the past week so I have definately had my hands full.

Update September 2005

Karina and Kieran have received some posty in the past few weeks and they are so pleased and surprised that they are thought of. Karahs illnesses do take over all of our lives so its really nice, thank you every one.

Karah has another infection at the moment so she is poorly again. I knew as soon as she went back to school she would come down with something, but she was so determined she was going. She has lost so much weight recently, it’s just falling off her. So if anyone has any tips to persuade her to eat i would appreciate it. We are ok, though getting excited about Christmas.

Update 20th June 2005

Karah is having lots of hospital appointments lately and physio etc and is so happy that she gets lots of post, it really cheers her up and I get to open my own post now. Unfortunately they are mostly bills! Never mind. Take care everyone Karen xx (Karah’s mum)

Update 9th June 2005

I’m not too good, i’ve got ear and chest infections at the moment, but it should be gone soon as i’m on medication. Thank you for the card and prezzie – i’ve had fun stamping pictures in the pad.

Update 28th May 2005

Karah managed a few hours at school this week but as usual she picked up an infection that was floating around. So when she got some post from post pals she was happy.

I would like to thank everyone for their cards and gifts and kind letters. They all really cheered Karah up, I actually got to open my own mail. Thanks again to all of you. From Karah and Karen (Karah’s mum)

Story written 2009

Kaden was diagnosed with Cystic Fibrosis at 4 weeks old. It was confirmed that Kaden had Cystic Fibrosis through the heel prick test and a sweat test. They started treating him immediately with the medication he needed to keep him well and also with physiotherapy.

Kaden has grown many bacteria’s on his lungs for the last two years including pseudomonas twice, so he has to have a nebuliser twice a day to keep it at bay.

Kaden also has poor weight gain and is on a high fat diet but does not eat a lot. He is small for his age and we have to put powder in his milk to add extra calories.

Kaden does not go to nursery or play groups due to infections and is an only child so he is very lonely.

Update 11th February 2011

Well, first of all an apology for not updating in a while, we have been so busy moving and decorating our new house and we finally have the internet back! Kaden’s got a new great big bedroom which he loves; in fact we don’t see him much these days as he’s up there a lot!

He had a great Christmas and got a new toy kitchen to play with and a million other things! He loved the snow we had. He’s also enjoying school so much, he has lots of friends and sings in class all the time and gets gold stars for his singing.

His puppy slinky is now six months old and is doing great. He and Kade are best friends.

He is doing great health wise as he’s eating really well and has weight on him! We had a few ups and downs with coughs and colds, but nothing serious.

Thank you to Sharon (Courtenay’s mum) for the wonderful memory box. We have also had lots of post and gifts from people, so thank you all.

Update 9th October 2010

Well a lot has happened this month. Kaden celebrated his 3rd birthday and had a space party, it was great fun and he really loved, I think it was his birthday for about a week!

He also started nursery which I was more worried about than him, but he loves it so much and loves going everyday and has made lots of new friends.

Also, a big surprise for him was that he got a new puppy called slinky rex buzz! They are already best friends! He is a Jack Russell and so cute!

Kaden received lots of cards this month for his birthday some wonderful gifts. Lots and lots of thank you’s to everybody who took the time to send him a gift and spend their well earned money! We’re so thankful. I’m so sorry that there is too many gifts and names to mention, but we do have a list of thank you’s that we will get round to doing to each and every one of you.

Update 29th August 2010

Kaden’s been a little ill this month. He has a chest infection and he’s on meds so hopefully he will be ok soon. Our dog also sadly died and he was really upset over that, but every day gets better.

On the bright side, Kaden got a new space bedroom and he loves it – a big boy room! We have also been to butlins and had a really fun time. There was lots to do and Kaden really loved the beach, it is his favourite place. He’s also looking forward to his birthday coming up (a big three!) and he’s having a space party.

A huge thank you to Grace for writing and sending Kaden lots of drawings and a little friendship bracelet, we really look forward to getting post from you. Also, thank you to Sheelagh Hawkins for sending Kaden a doorbell for his bedroom, such a great thing, he has recorded a message for his new bedroom and he shouts ‘get out of Kaden’s space room’! He loves it. Thank you to everybody else who has sent post too.

Update 13th July 2010

Well, what can I say; Kaden did come off his neb and seems to be doing great. He has grown so much which is fab and he’s also starting school nursery this term. He wasn’t going to go but because he’s doing so well it is such a shame to miss it and his CF nurse said he should as it will do him wonders. Of course Kaden is so happy he gets to go and play with all the kids and have friends, so all is very good at the moment, he is amazing.

Thank you to Grace Bridgewater for the fab picture you drew of Kaden – it was so good, you have such a talent and he was made up with it. Thank you to Penny who got Kaden a drawing and painting set and me some chocolates which were lovely, you are so kind. Also, thank you to Miss Trevor for the toy hamster, and to E Mason for the danger mouse teddy. You are all so kind. We haven’t got round to thank you cards just yet, but we will.

Update 14th June 2010

There’s not much to update this month. Kaden has just had his review and he’s doing really well and fingers crossed he might be coming off his nebuliser soon if his cough swab is clear. He hasn’t grown pseudomonas for a while so here’s hoping it is gone for good. He has been eating a lot better and put on a few pounds which is so great after along battle. He has got a chest infection at the moment but he is still running round like a loony!

Thank you for the lovely cards and gifts. Kaden loved the box of pirate stuff, thank you very much. He also loved the music parcel too. Sorry if I didn’t mention everyone, it is hard to keep up with so many lovely gifts and cards, he really is a very lucky little boy.

Update 10th May 2010

Kaden has had a great month and we have been very busy had lots of parties to go to. Mummy has also passed her driving test so there is no stopping us.

My Auntie Kerry is doing a skydive on the 22nd of May for Cystic Fibrosis so we will be watching and cheering her on! We are hoping to raise lots of money.

I got a new Bob the Builder bike this month and I’m learning to ride it. I also had a little accident as I fell down the stairs, but I’m ok now. I promised mummy I will never go on the stairs on my own again!

Well, got to go, me and mummy are going to bake some buzz cakes.

Thanks for the post this month and the lovely Mickey Mouse drawing – Kaden loved it. Kaden has had some great gifts this month too so thank you very much.

Update 4th April 2010

Kaden has been unwell for a few weeks with bugs, has grown a few bacteria and has also got a nasty cough. As always though, he carries on being a nutter! Nothing puts him down.

He really enjoyed going to see Snow White and sang all the way through. We went to the fair yesterday and he just loved it. The weather was so sunny, which we love, as we get to go out and have fun in the sunshine!

Easter has been great and Kaden has lots of chocolate! Thank you to everyone who sent him an Easter present. Thank you cards will be sent to everybody soon. Kaden received some lovely gifts, so a big thank you to Lokryn and Talek, also to Alan and Julie, and Emma Irvine. Thank you to everyone else who sent Kaden post, there are too many to mention. Also, a big thank you to Yvonne who sent me a lovely box of gifts for Mothers’ Day.

Post Pals is doing a wonderful job and making so many children happy.

Update 5th March 2010

There’s not much to report this month, other than Kaden is doing really well at the moment. He’s put some weight on and we are also really looking forward to summer this year so we can get out more.

He’s really looking forward to going to see Mickey Mouse and Snow White in the Echo Arena. We’re so excited as they are his two favourite films.

He is really enjoying getting his post; he’s such a happy little boy. Kaden received a Timmy Time bedroom door sticker with his name on which he loved so much. Thanks to everyone.

Update 1st February 2010

Kaden has had a great month; he is really well and is even eating! He’s put two pounds on – yippee! He loves getting his mail and says he now has lots of friends.

Kaden has received some beautiful hand made cards this month and it means a lot that people have put all their time and effort into making them – we like them a lot! Thank you to everybody who sent Kaden mail and gifts. He really loved the Mickey Mouse teddy/pillow most of all – thank you to Charlotte and James for that as it really made his day. Thank you for the books too, he’s received iggle piggle and an animal farm touch and feel book. He loves them. Thank you everyone.

Update 7th January 2010

The beginning of December was hard for Kaden as he was ill and feeling a bit sorry for himself, which is so unlike him, but come Christmas time he soon was back to his normal self and so looking forward to Christmas.

Christmas was great this year and Kaden was really pleased with all his toys from Santa.

For New Year we went to a family party and Kaden was the centre of attention, singing and dancing and keeping everyone entertained, which he loves to do. Then of course when the snow came, it made Christmas even more special for him and we loved making snowmen.

Thanks for all the cards and reindeer letters as Kaden loved them. Thank you to Alan and Julie for the lovely gifts they sent which Kaden loved, it was so kind.

Update 4th December 2009

Kaden had his annual review today at the hospital and he has done great on all his tests – we are so pleased, and he has made us all proud today by eating! Let’s hope he keeps it up.

Thank you to everybody who took the time to write to Kaden and send him gifts. I didn’t realise how much people care and think about others – you all are truly great. Thank you Post Pals for coming into our lives and making my little boy so happy.

Update 27th November 2009

Kaden has just received his first piece of mail from Post Pals and I just have to say that I’ve never seen him so happy – he’s over the moon and he is jumping with joy shouting thank you! I would just like to thank Post Pals and the little boy aged 4 who sent him mail, you have made him a very happy boy. We would love to send a thank you card to the little boy but have no return address.

Story written 2005

Jordan was diagnosed with Cystic Fibrosis at five and half weeks old after failing to thrive. Soon after diagnosis, he began to put on weight and grow normally thanks to all the medication he takes daily (40+ tablets a day) and twice daily chest physiotherapy.

Keeping Jordan healthy has been a lot of hard work but worth every moment. He is quite a sensitive child with lots of worries and a fear of needles which complicates matters re tests and treatments, but he is a lovely boy who his parents are very proud of.

Last summer (2004) he grew his first serious germ on his lung and had to start using a nebuliser for extra antibiotics, night and morning. At the moment he has the all clear of this germ and has been able to come off the nebuliser. He is doing well at school and is much more confident this year.

Jordan is brother to Pal Alex William H.

Update May 2008

Jordan is turning 16 in July and thinks that it is time for him to “move on” from Post Pals to give younger pals more “space”. He is VERY VERY grateful for his time as a pal though… thank you so much.

Update 9th March 2008

A HUGE thank you to Doug, Kristie, Riley and Declan from Virginia, who sent our whole family a wonderful parcel. It contained a brilliant gadget for Jordan (an electronic spinny thing that gives a message in lights as you spin it – he spins it across the kitchen floor while he’s doing his nebuilser each evening!) a fantastic cuddly pink unicorn for Jessica which she has taken to sleeping with every night and a car and a BRILLIANT toy drum machine for Alex (he LOVES it! He can actually play it and it is improving his hand/eye coordination while he does!) They also sent a big pile of postcards of interesting places in Virginia for all of us.

It was an absolutely brilliant parcel and a complete surprise. It contained some really great, well thought out presents for the children. Thank you all again so much! It was so kind of you.

Update 3rd January 2008

Jordan is well still (touchwood) in fact we bought him some weights for Christmas to help encourage him to build up those chest muscles even more; they are already pretty impressive from all the swimming he does.

He is still doing he weekend job in the hotel kitchen although whining a bit more about going now… it seems the novelty of loading/unloading dishwashers has worn off somewhat… although he still enjoys the money! 

Jordan has an extra incentive to stay well this year as he is going to Egypt with his dad and his “other family” in August. Jord has never been on a plane before but is really looking forward to it. I am already nagging him about the need to make sure he stays hydrated etc! But that’s what mum’s are for… (I think he’s very relieved I’m not going… I may buy him an extra piece of luggage and climb in! That’ll please his dad… to see the ex-wife emerging at the other end! hahaha!)

Jordan is very much looking forward to our long awaited move which we are hoping will be by March. He can’t wait to have his own bedroom (which is quite sizeable!) and already has all the stuff, in all the right colour scheme (Chelsea blue, naturally!) all waiting to be used! 

A big THANK YOU to ***EMMA*** for the wonderful elf gifts sent for Jordan which he only received yesterday because unknown to us the parcel was at the post office and they only let us know yesterday! Jordan went to collect the parcel himself, unwrapped it on the way home, and got home without the packaging (!) so I couldn’t search for an address/email address so thank you… this is the only way we can thank you – I hope you see it!  He was absolutely thrilled to bits with the “almost entirely Chelsea related” parcel which includes a book about the club, a key ring, a pen, a “noisy monkey”, and some “Chelsea boxing gloves” which he says he is “saving to hang in the windscreen of his first car” (ye Gods!!!) It was a lovely parcel Emma, thank you so much!

Also to Alina (who we thanked by email but who deserves a mention!) for the Top Gear dvd she sent Jordan… he was extra thrilled with that too and has watched it a few times already!

Update 3rd October 2007

I know it’s been ages since I updated for which I sincerely apologize but it’s mainly down to Alex (another Pal and Jordan’s brother!) who has been presenting us with a great many challenges lately! (See Alex’s update).

Jordan on the other hand has had a great few months. His CF (touchwood!) is causing him few problems at the moment and the Prof. at Kings (who share his care with our local clinic) has even taken him off the nebuliser for the two current weeks running up to his Annual Review at Kings – which is this Friday. I have to admit I had my misgivings about this, as Jordan has grown pseudomonas (the germ which the nebulised drug, Colomycin, treats) at least once a year since he was 11 and I doubt it can have gone completely, despite tests being clear since last September. It does tend to lurk and hide… but the Prof wanted Jordan to have once last chance at having a “neb free time”. If it shows up again after the tests on Friday, then this time he WILL be on it for life. But as we thought he was anyway, this is no great hardship – whatever keeps him well. And so he is enjoying not having to do it for a few weeks at the very least. The Prof convinced me that the pseudo cannot run amok and do untold damage in this time and so… well he’s the Prof… I am but merely a neurotic mother!

Jordan has grown up so much in recent months. He turned 15 in July and we took him and two friends out to Jord’s favourite mexican restaurant and they later slept in a tent in the garden! (They were much better behaved than last year when, for some reason, probably largely related to an excess of Red Bull (!!) they upset our neighbours by throwing chocolate Aero balls at their windows… ??! Yes I’m baffled too… that’s 14 year old boys for you!)

We had hectic summer holidays. We spent a week at Pontins, Hemsby (Norfolk) which I have to be honest and admit was pretty much ruined by Alex, who sleeps even worse when we go anywhere and kept us (his parents!) awake most of all night, every night. We gave Jordan the treat of his own room in the chalet (until this time he has been sharing with Alex, but Alex’s behaviour is now so bad that Jordan sleeps on the floor of Jessica’s room while we await our VERY LONG AWAITED move!) so Jordan enjoyed this aspect of the holiday more than anything else I suspect. The holiday was kindly paid for by CF Dream Holidays which was fantastic of them – we wouldn’t have gone away otherwise – but to be honest, it will probably be the last family holiday Jordan accompanies us on. He wasn’t interested in any of the evening entertainment – indeed he wouldn’t come! So most evenings we put Alex to bed, left him with Jord and took Jess. It gave Jess a little bit of rare time, just her and us which was nice but I felt a bit bad that this was JORD’s holiday. But fifteen year olds don’t really want to go “out” socially with their parents do they! He didn’t even come the one night we braved taking Alex, but Alex was so badly behaved and spiteful that we all came back early.

Later in August, Jordan got his result for the one GCSE he had taken (a year early… Y10!) in photography! He got a C! A university level grade… in year 10!! We were very proud… as were the school! He got a personal letter from the Head! We asked him what treat he would like for this achievement… he chose a pair of trainers!

Two weeks ago, Jordan was devastated when we found out about the tragic death of his favourite swimming coach, Simon. Jordan thought the world of Simon and it has affected him quite badly. He was even ill and off school for one day that week. We went to his funeral last week – the first Jordan has ever been to but he really wanted to go. He still can’t believe he won’t see Simon again and hear all his advice and jokes on the poolside. But at the same time Jord feels almost guilty for feeling so bad because he can’t even imagine how bad Simon’s family are feeling, in particular his 13 year old Son, James, one of Jordan’s swimming friends. This is Jordan’s first real experience of losing someone who is not an older family member and it has hit him hard.

Rest in Peace Simon. We will never forget you. You were a fantastic swim coach and a lovely person.

On a happier note, Jordan has a weekend job! His requests for phone credit were getting beyond us all so I suggested a job. We phoned around some places and last week he got a call from a local hotel/restaurant about some kitchen work. He worked two 8 hour shifts lasts weekend, primarily loading/unloading the dishwasher for £5 an hour! Pretty good for a 15 year old don’t you think?! And they feed him! He walked out with £80 last Sunday evening… I’ve never seen him as proud! Will be handy for saving up his spending money for next year when he goes to Egypt with his dad and family.

Finally, today we got a letter to say that Jordan is being awarded Y10 Student of the Year award (for last school year) at presentation night on the 17th! He doesn’t even know yet I don’t think; I can’t text him – his phone is here I have just seen! So I am telling Post Pals before him! Again, we are very proud!

Thank you so much to Karen for the lovely post cards and notes that she always sends to Jordan. We all hope you are feeling better now Karen, after your flu.

Update 9th May 2007

Two weeks ago Jordan took a GCSE a year early. This was a two day long photography GCSE which has come about as a result of him doing a photography course since Y9. He got the opportunity to do this because he was identified as gifted in Design and Technology at the end of Y8 (I hope he doesn’t read his page and see what I’ve written – he hates me blowing his trumpet for him!) He enjoyed the exam and thinks he may have done fairly well. He produced a lovely picture of churches and local countryside made up of photos he had taken himself. However well he does or doesn’t do, we are really proud that he took a GCSE in Y10 and I reserve the right to blow his trumpet!

Jordan is also working very hard at GCSE coursework for all his other subjects. I know he’s feeling the pressure a bit but is managing to juggle it all with his swim training and his day-to-day treatment regime. And since I doubt he’ll read this I can say I would relax a bit more if he’d work a little harder at his physiotherapy (!) but his CF team are happy with him and his lung function scores are excellent, so I suppose I shouldn’t grumble too much.

Jordan has also been doing extra “keeping fit” by way of training with his dad, jogging and at the gym. His dad is training for the Canterbury Half Marathon and is running in aid of the cystic fibrosis trust. Am I allowed to say that if anyone would like to sponsor him, they should (please!) go to http://www.justgiving.com/wwwjustgivingcomdanny where they can do so securely online. He has a target of £1000 but we think that may have been a bit ambitious, although we’ll keep trying to reach it until the 27th May which is the date of the half marathon.

Thank you so much for the letters and cards that Jordan has received lately. However busy he is, I have noticed that he always finds time to dive for his “posty” and read and re-reads what is sent to him. Thanks loads!

Update 8th February 2007

Jordan is really busy at school doing GCSE work and also at swimming, still training hard 3 times a week. Jordan is even more excited than Alex over our house move that will take place when the extension is built and finished (which will include a downstairs bedroom and shower-room for Alex) because this will mean that Jordan will have his own room for the first time that he can remember! This is actually needed for more than medical reasons (fact that Alex spreads a lot of germs Jordan’s way because he’s prone to chesty coughs and colds which are not good for Jordan to be around due to his CF and also keeps him awake half the night as Alex is not a good sleeper) but also because Alex regularly trashes all Jordan’s things. His stuff has been climbing the walls higher and higher over the years in an attempt to keep it safe but Alex, although he can’t stand or walk unaided, just sees this as a challenge and climbs higher (and usually FALLS!) Poor Jord got quite a few of his Christmas bits and bobs trashed a couple of months ago and it’s a hard situation to deal with as Alex doesn’t really understand that he has done wrong; he is just compelled to do these things!

So Jord is happily planning the decor of his new room (in Chelsea colours naturally!) and counting down the days until we move… which is a bit difficult seeing as we don’t know when we’re going yet! (Hopefully before summer.) 

Jordan’s health is good; his lung functions have been fine lately and the clinic is pleased with him. There has been some talk of him starting to think about the transition to the Adult clinic which will take place in the next couple of years. I think I’m more nervous about that than him!

Thank you again to Karen, who has now, so we understand, sent him the last of the crazy pictures of cats doing unlikely activities!  Jord was quite disappointed about that… we all have a good laugh about those cats… especially Alex!

Update 1st December 2006

Jordan has a cold at the moment so is on extra antibiotics but is ok in himself. The CF nurse is coming to do a lung function test on him in a couple of weeks just a keep an eye on things but I don’t think there can be much to be concerned about as at swimming club last week he swam the length of the pool and halfway back, underwater, without coming up for air once! And very fast as well! I was watching and thinking “Eeek, he hasn’t breathed once!! Is he ok?” and thinking how stupid I was because of COURSE he was ok… he was bombing along under the water doing front crawl!!!

Jordan competed in an inter-club gala last Saturday and managed to get four new personal best times. We were all really pleased. It’s also Club presentation night this Saturday where he will be brining home all the medals and trophies he won at the Club Championships in October. (Jess should be bringing home a few too.  She is following in big bro’s footsteps I feel…)

Thank you to Dorina who sent Jordan a lovely drawing that he was really impressed with and commented on how long it must have taken her! Thanks loads Dorina!

Thank you also to Karen who sends Jordan such fab cards with pictures of cats doing mad things (like canoeing on them!!  We all hope her move went smoothly and she is enjoying living in a house rather than a flat!

Update 1st October 2006

Jordan is in Y10 now at school and so has started his GCSE coursework. The options he chose were Engineering (which is a double option) and GCSE PE… so he is doing lots of PE per week which is really good for him and for his chest. He is doing great with his swimming and he and Jessica are about to compete in the swimming club Championships (the next two Tuesdays) and also took part in a charity gala last night.

Jordan has just had an annual review at King’s College Hospital and the CF team were very impressed with his level of fitness and his muscles and posture, but were a little concerned with his lung function scores which indicate that his lung function has dropped a little in the past few years. They will be looking into this to see if they can see what the specific cause is, being as Jordan is so well and is not feeling any ill effects whatsoever. If they can find out why, (e.g. lung infection that has not shown up on recent samples) then it will hopefully be possible to bring his lung function back up to its previous (excellent) level. Jord is a little nervous though in case this may involve a course of IV antibiotics which he has managed to avoid until now. This would also obviously interfere with his swimming training (which is probably the main reason his lungs have stayed so well for so long) so we are hoping IVs won’t be necessary any time too soon.

Jordan was really impressed with a card that Viks from Postpals sent him which was made in the design of a football pitch, with his photograph on the front and team all named as him and his friends and family! Thanks loads for that Viks. Also, we don’t know who sent it or which of the boys (Jordan or Alex) it was for, but someone sent a beautiful picture drawn and coloured in coloured pencils. One side of the paper is a picture of a treehouse, a windmill and lots of flowers and the other side is of some buildings and flowers with a cross on a hill. It is really lovely and must have taken a very clever child ages to do… and the detail is amazing… all the individual leaves on the trees have been drawn and coloured in! Thank you so much! Jordan has enjoyed receiving postcards from different places in the world too; so thank you to all who have sent them.

Update 29th June 2006

Jordan is fine… he is 14 next month and suddenly looking really grown up! He has a really hectic social life now. Health wise he is good too, although has been suffering from a bit of hay fever which hasn’t bothered him in previous years, so his consultant has put him on some medication to help prevent it affecting him from a CF point of view.

Thanks as always for the posty Jordan has received this past month and the previous two in which I couldn’t sent emails due to pc problems.

Update 1st June 2006

Update 4th April 2006

Jordan is really well and currently (as I type) in Austria, skiing with school. We have really missed him… and are counting the days until he is home… although I’m sure (and hope!) he isn’t! It’s just weird not being able to contact him as they were not allowed to take their mobiles. We hope he’s having a really good time as this is a once in a lifetime trip for him which we only afforded with help from his dad and a great CF charity called Gina’s Wish.

This is his first experience of being completely in charge of his own care (medicines, physio, nebuliser etc) although a first aider will be making sure he does it! I will update again soon to let you know how he got on.

Thanks as always for everything. The children have had a really great ‘posty’ month and still get so excited when it arrives! Big thank you’s to Kate (Postpals), Julie Barret, Karen Reece May and Lisa Clift for the lovely posty you sent Jordan in March.

Update 28th February 2006

Jordan has had the flu (as well as Alex and Jess) but, like his sister, was over it within a few days. This was a relief as he has been growing a germ on his lungs – Staph – for which he is on another antibiotic, but the flu did not seem to affect him too adversely and his cough is clearing up now.

Jord is getting really excited now about his ski trip (to Austria with school) at the end of next month!

Update 28th January 2006

Jordan is very well and finally appears to have recovered from a 6 week (!) cough which was worrying me a bit despite all sputum samples being clear. He has a check up on Monday at the CF clinic so I’m glad he has got rid of his cough in time for that.

He swam with a different swimming club between November and December because his club’s pool was closed for renovations for 6 weeks. They usually close for 3 weeks over Christmas but 6 was too long for him because swimming helps keep his lung function up, which is he swam with the other club. He is now back at the usual club and at full fitness judging by his speeds at training sessions! He is giving Open events a miss (against other clubs in the county) for now as he doesn’t really enjoy this level of competition (although I am hoping he will change his mind in the future!) He’s still competing in club and inter-club galas though.

I am nominating him for a Cystic Fibrosis Breathing Life award this year (the final of which is televised on Living TV later in the year) as I feel he’s achieved such a lot in recent years, what with his swimming, the Ward and Partners Annual Children’s award (sporting category) and being identified for the Gifted and Talented programme at school. He has now started a GCSE photography course a year early, due to this, which could result in an early GCSE qualification, in Y10 rather than Y11.

Jordan goes skiing in Austria with school this coming Easter which he is really looking forward to. We have paid for this together with help from his dad and step mum and with a donation from a CF charity called Gina’s Wish. We think he deserves this holiday and it will be a great opportunity for him!

The boys (and Jessica) have all received some LOVELY hand made cards this month – we have them all along our window sill and they look really impressive!

Update 22nd December 2005

I would like to post a special thank you to Lisa as she is just one of the lovely people who have sent parcels to the children in recent days and weeks… but I was totally amazed (in fact speechless!) when yesterday a parcel came for ME!! On a parenting website I use (one of those which I have used to advertise Post Pals lately) there was a recent conversation thead about what we parents would like to see being delivered by the postman for us even if just in our dreams! There was a discussion about makeup and someone mentioned Clinique… and I agreed saying that would be great as I usually use much cheaper brands so Clinique would be a rare treat. Yesterday a small decorative box arrived, via Post Pals, addressed to ME, and containing Clinique makeup!!!! She had put a little note in with the makeup which said “Because sometimes Mums need surprises too…” It really brought tears to my eyes and I wanted to tell everyone. I don’t know this lady at all… she was ‘just a user name’ on a forum. I fully intend to ‘pay it forward’ as soon as I can, take a leaf out of her book, and surprise someone else who will appreciate such a gesture the way I did.

Whilst writing i would like to thank everyone who has sent cards and other posty to us this Christmas. A very special thank you to all the children at Ureshino Junior High School in Japan who have sent Alex and Jordan some really lovely hand made cards with some really beautiful drawings in them! Jordan was extra impressed and he likes to draw too… he thinks you are really talented! Wishing you a very Merry Christmas and much love.

Update 25th October 2005

The Glucose Tolerance Test was a bit traumatic for him (he nearly fainted and was very sick – this is the way he reacts to the stress of the blood tests involved, the sweet drink and having to fast when normally he eats such a lot!)… but we are happy to say that the result was fine and that he does not have CF-related diabetes which is always a possibility once people with CF get to Jordan’s age.

Update 25th September 2005

Jordan has a clinic appointment on the 5th Oct followed by a Glucose Tolerance Test which he hates because he is very needle phobic and hates having to fast. Last time he had one he fainted so is obviously dreading this one! But he is very ‘well’ in himself despite the pseudomonas and nebuliser treatment that is taking up extra time again. He is in training for the Club Championships at his swimming club and this week has 2 awards ceremonies to attend… Wednesday at school for History and Music awards and Friday at the Ward and Partners Annual Childen’s awards where I think I am right in saying he will be actually getting his laptop!! (As his jealous mother types away on her old relic of a pc!!!)

We would just like to say that ALL cards, gifts and letters are SO appreciated and that I spend a lot of time worrying about people we haven’t thanked, but our daily routine just doesn’t allow it, so I reply as often as I can. The children all really love the things they are sent. Jordan in particular is very impressed with his growing collection of ‘global’ postcards!

THANK YOU so much to everyone and just because you may not get a personal reply, please (I am so disorganised and ‘bogged down’ with all the children’s different therapies/routines/medications/appointments/hobbies etc) please don’t think that your thoughtfulness is ignored.  We all get so much pleasure from Posty. Thank you all.

Update 7th September 2005

On the heels of such good news we have today found out that Jordan is growing pseudomonas again and this time it is a mucoid (resistant) strain.  The first time he ever had this bug was last year and it is quite unusual for a child with cf to get to age 11 without culturing pseudomonas so he did very well. We thought he was rid of it – in fact he was and he came of the nebuilised antibiotics this May. But I have been aware that this might be a bit too good to be true and now he is back on it and possibly indefinitely because this mucoid version is apparently almost impossible to irradicate. So we are a bit gutted this evening (after all the excitement yesterday!) but Jordan seems to be taking it in his stride – he is just grateful that there is no mention at the moment of him having to go into hopsital for IV antibiotics because he still doesn’t deal with needles too well.

He had an annual review last week at Kings in London and his lung fucttion actually couldn’t be better – so we just have to work on keeping it this way despite the pseudomonas.

Update 6th September 2005

We are very proud at the moment because his Nan nominated Jordan for an award (for children with illness/disability who excell at sport) and he has won the category!  He will get his prize at an awards ceremony on the 20th Sept and he has won £1000 (!!!!) to spend on what he likes!!! He has to choose a main prize which will get presented at the ceremony and the rest he will get as a cheque! He thinks he might choose laptop. He is still in shock, bless him!

He also has been asked to join the Gifted and Talented programme at school for his work in Design and Technology! I am so proud as he has never been the most academic of children… more a practical chappy… and this is about his practical skills.

He is so confident now when less than 2 years ago it was a different story and he needed to see a psychologist about all his worries!

Update 20th July 2005

Jordan has asked me to email… he was absolutely thrilled to receive some lovely Posty for his 13th birthday on 23rd July.  We went to Disneyland Paris two days later for 2 nights which was a treat paid for by the Starlight Childrens Foundation (they grant wishes!) and Jordan, Jess and Alex absolutely adored it there… as did we. Alex’s face was a picture when he saw and met the characters!

Problem is, when we got back and Jordan went to write his birthday thankyous, although we had written a list, we had muddled some up, as it had been done so hurriedly when we preparing for our trip. So we were wondering if you would mind putting a big THANK YOU to all who send him posty on his PostPals page. He has sent a couple of personal replies already.

Story written 2007

Joseph was diagnosed with Cystic Fibrosis at 4 days old through an emergency blood test taken when he was a day old. This emergency was brought about because his then 8 year old brother had also been diagnosed at the age of 4 with the genetically inherited life-threatening illness Cystic Fibrosis. Once a positive diagnosis was made they were able to start treating him immediately with the crucial medication needed for an important start in life.

Joseph is a happy, outgoing, funny, naughty and extremely cute “normal” looking 4 year old. What is going on inside his body is unknown to many – no one would ever think he had a life-threatening illness.

Story updated 2015

Update 4th April 2016

Joe is currently unwell and due to start IV antibiotics ahead of a Fundoplication procedure to stop the reflux which is causing him to cough constantly. Many thanks for the cards and presents this month – especially the lovely chocolate cake.

Update 4th March 2016

February was not a good month for Joe.  He started it having 2 weeks of IV antibiotics.  After this 2 weeks his lung function was no better so he was admitted to Hospital for a 3rd week of IV antibiotics and to work with the Physio.  While he was admitted he has an Endoscopy and a PH Study under general anaesthetic to find out when his lung function has dropped by over 40% in a year since his Gastrostomy in January 2015.  As a result of this it was discovered that he is silently refluxing which means he will be admitted to Hospital again soon to undergo a Fundoplication procedure to stop the reflux.

Update 8th February 2016

Joe’s health is not great at the moment.  HIs lung function was down to 49% from 55% before Christmas last week.  He started a 2 week course of IV antibiotics on 1st February and was really unwell.  SAT’s low, struggling to breathe properly and he escaped being admitted to Hospital only by me insisting they allow him home.  He gets more sleep/food/Physio here with me.  Today his blows are up to 51% and SAT’s 99%, so progress is being made, albeit slowly.

With thanks to every single person who takes the time to write to Joe, send him a card or a gift – really appreciated.

Update 6th January 2016

Joe had a lovely Christmas and received lots of cards and several gifts.  Many thanks to everyone who took the time to send a card, write him a letter or send him some lovely gifts.

Update 28th October 2015

Sadly Joseph has returned to Post Pals as his health has deteriorated considerably, his lung function has dropped by over 30% in the past year. He now has CF related diabetes, CF related liver disease, nasal polyps, severe Bronchiectasis and is fed overnight via a Mic-Key button after a Gastrostomy in February. He has frequent chest infections and IV antibiotics for 2/3 weeks every 2/3 months.

Update 1st March 2011

I feel it is now time to move Joe on from Post Pals to make room for those more in need. I would like to thank all those who have taken the time to send Joe post over the past few years. Thank you for all the support.

Update 3rd January 2011

Joe is currently struggling with a persistent cough which has been lingering for a few months, so IV’s are on the horizon sooner rather than later – much to his disgust as he is still not keen on needles. His weight gain is still a problem and on-going struggle.

Joe now has Dan’s Xbox so he’s become slightly addicted since Christmas! He loves playing on the Toy Story game and Ben 10 game.

Thank you to all who took the time to send Joe a Christmas card or gift – he loves receiving post, especially cards.

Update 23rd November 2010

The on-going problems with Joe’s weight gain remain and we’re fighting to keep him well for our holiday in Cyprus next week… he can’t wait! Hopefully this will make a big difference to his weight as he loves the pancakes for breakfast there. It’s a pity we can’t move out there to live in winter!

Update 30th October 2010

Joe is still struggling to gain any weight and this is now becoming a bit cause for concern. We’ve tried build up drinks of varying kinds, but he is a picky eater and eats very little. He is being threatened with tube feeding if he doesn’t gain a reasonable amount of weight over the next few months. He is also under threat of another 2 weeks of IV’s before Christmas if his persistent cough does not clear up with oral antibiotics.

He has just had his annual flu jab which made him quite ill for about 24 hours, but is now back to his usually happy, smiley, hyperactive self!

Update 30th September 2010

Joe is relatively well at the moment – touch wood.  His brother is in Hospital so Joe has acquired his X Box for the duration of his stay!

Update 30th August 2010

Joe had 10 days in hospital this month for emergency IV’s before we departed for Cornwall for 12 days. His breathing problems appear to have disappeared and at the moment he is relatively well and looking forward to going back to school next week.

Thank you so much to Post Pals for providing Joe with tickets to Legoland – he is really looking forward to going.

Update 3rd August 2010

Joe is currently in hospital. He was admitted on Friday for emergency IV’s due to breathing difficulties and crackly chest. We are hoping that a week of IV’s will suffice to pick him back up so we can go on our summer holidays to Cornwall on Saturday. It’s all looking a lot better after only 4 days, so fingers crossed.

Thank you to Post Pals for organizing the personalized pillow case – Joe loves his.

Update 30th June 2010

Joe is relatively well at the moment. We’re waiting for an appointment for a scan on his nose though as it appears that he has nasal polyps – another nasty addition courtesy of Cystic Fibrosis which has caused his nose to be constantly blocked for about 18 months – new Steroid spray is clearing it a little and he is amazed that he can now breath through his nose… something which we all take for granted!

Thank you to the lovely lady who sent Joe a quilted cushion with frogs on it – he loves it!

Update 30th May 2010

Joe has his Annual Review on Tuesday with his brother. He is not looking forward to that as he is terrified of needles, but he always gets something as a “prize” after for being brave. He is having lots of problems with poor weight gain, constant cold, hearing problems, and breathlessness. He has been diagnosed with having Hayfever, so that’s causing him problems and has now been referred to the ENT Department to ascertain if he does indeed have a hearing impairment or if it’s just selective hearing for a child his age!

At the moment my smiley happy Joe is not so smiley, but post does help so please keep it coming – he likes the fact that he gets more post than us!

Thank you so much to all those who took the time to send Joe a birthday card – he got loads! Thank you for the lovely letters Joe has received this month – especially from the children – he loves to read them all. Thank you for all Joe’s birthday presents – they made a difference to his day.

Update 1st May 2010

Post for Joe as a distraction at the moment is vital as his Annual Review is looming within the next 4 weeks and he is terrified of needles, so he is not looking forward to his bloods being taken and is constantly whittling on about it. His chest is not good at the moment, having grown Pseudomonas yet again, so he is on oral antibiotics and under the threat of 2 weeks of IV’s if this course does not work – another fear factory of 2 weeks of canula needles. He is also struggling to gain any weight, which is a major issue and a constant battle.

I’m so pleased that Post Pals got a mention on the BBC program – it has given the charity a major boost in awareness for all the children who deserve smiles.

Thank you for all the lovely cards and letters Joe has received this month – especially from the School children who have taken their time to write some very interesting letters. Joe has also received some lovely presents this month – he has been very spoilt! He wants to know why he is so special getting so much post! Thank you to all who sent him something to make him smile.

Update 31st March 2010

Joe is struggling in a big way to gain any weight, so I fear he may be taken in to hospital soon for drip feeding and IV antibiotics. He has been growing a concoction of Pseudomonas and Staphs for a few months and has not been admitted since last April, so much to his disgust, the inevitable may happen very soon.

He is very excited about the new Dr Who starting on Saturday and is currently counting down the days and hours until it starts!

Joe loves all the hand made cards he has been sent this month, so thank you to every one who took the time to send him one. He’s been saving them. Thank you to all who took the time to send Joe a gift too.

Update 28th February 2010

Joe is continually fighting a cold virus which he has had for well over a year, but it doesn’t get him down. He continues to be a happy and outgoing little boy.

Joe has a Nintendo DSi now so is learning how to play games on there – it’s excellent for teaching him how to spell and add up.

Joe’s Gerbil, Rosie, has had more babies so now we have 14 Gerbils and counting! We’ve had to separate male and females to stop the breeding.

Thank you to Catherine and Anne for the lovely box of treats for me for Mothers Day – a pleasant surprise and most welcome. Thank you to all those who took the time to send Joe a letter or a card this month – he has had lots of letters and loves to read them all himself now. Thank you to all those who took the time to send Joe a gift this month as well – especially his Valentines gift.

Update 31st January 2010

Joe continues to try and fight the germs which threaten to hospitalise him for another 2 weeks of IV’s – something he does not relish. His brother is to be admitted for 2 weeks on Friday so he is worried it will be him next. That’s not always the case with CF though – we just go with the advice we are given.

Thank you for all your help and support – we appreciate the Smiles that Post Pals give Joe when he is feeling sad.

Special thanks this month to Joe’s special smile poster!

Update 3rd January 2010

Joe still has a cold which appears to have lasted all year, but so far it’s not making him ill. He is struggling to gain a significant amount of weight and I do worry a lot about him. Both boys have CF Clinic appointment tomorrow so I need to get some advice on build up drinks or more high calories diets. If anyone has any advice on how to get a 6 year old to eat more/tempt him with things to eat, I would appreciate any feedback.

Joe’s Gerbil, Rosie, had another litter of babies just before Christmas! She has had 9 since August… Gizmo has been busy!

Many thanks to all those who sent Joe a Christmas card this year – he stuck them all up in his ‘Den’. Thank you to all those who wrote Joe Christmas letters – so much effort went into them and Joe loved the stories. Many thank you’s to Joe’s Elves who sent him some lovely presents. He was so excited every time he received a parcel/package and put them all under the tree ready to open on Christmas Day.

Update 1st November 2009

Joe is still struggling with a cold which has lasted for months and is getting him down. He’s been put on yet another antibiotic to try and shift the wet cough which is developing, so that he can enjoy his holiday in Cyprus in 10 days. We hope it will help.

Joe’s gerbil, Rosie, gave birth to 5 babies 2 weeks ago and so he is very excited about that and loves watching them growing.

Thank you to all those who took the time to send Joe a card or gift this month.

Update 29th September 2009

Joe is keeping relatively well. He is still fighting a cold virus which is into its third week and is making him feel a bit grumpy. He has lost 2 teeth within 2 weeks so is a bit gappy on the smile front at the moment! He was very excited to get money from the Tooth Fairy, although his older brother did spoil it by telling him she didn’t exist!

Joe and his brother have a Gerbil each now – Gizmo and Rosie (Rosie is Joe’s) so he’s been very keen to learn about them. He is a big animal lover and now wants a pony!

Update 30th May 2009

I’d like to thank all those who took the time to send a card or a present to Joe while he was in hospital and also everyone who sent Joe a card/present for his birthday. He still loves to receive post and is now starting to learn more about what Post Pals actually is and what it does for children like him who have to spend time in hospital.

Update 2nd May 2009

I’d like to thank those who took the time to send Joe some post and lovely presents while he’s been in hospital for 2 weeks undergoing IV treatment – they did make a difference and definitely made him SMILE!! Post can now be sent to the usual c/o address though.

Joe is due to be discharged on Tuesday afternoon – the day of his and his brothers Annual Reviews! We are all ready for a holiday now.

Update 23rd April 2009

Joe is in hospital for 2 weeks of IV’s. Post can be sent to him in hospital to this address:

Joe B

Room 10, Ward M2

Sheffield Children’s Hospital

Western Bank

Sheffield

S10 2TH

Update 1st April 2009

Joe is currently keeping relatively well although still struggling to shift a reoccurring cold and having problems gaining weight. He is still very active though.

Thank you to those who sent Joe a present this month. He especially loved the brown bear and he now sleeps with it. He loves cuddly toy bears of any kind and badgers too – he has a special friend Badger he calls “Sniffy” and he writes stories about him.

Update 1st March 2009

Joe is still teetering on the edge of having a 2 week hospital stay on IV’s. His older brother is currently in hospital for 2 weeks of IV’s and they would have had Joe as well if they hadn’t been so busy. He is on an antibiotic again for 4 weeks – if that doesn’t shift the horrible cough he has got, he’s to be admitted. He is not looking forward to that – he is terrified of needles.

We also discovered on Monday that he might have Glue Ear and Nasal Polyps – both common in children with Cystic Fibrosis. We’re waiting for a referral to an Ear, Nose and Throat Specialist.

Update 1st February 2009

Joe is currently keeping well after a stint of colds and coughs before Christmas, leading to a nasty virus which nearly had him admitted to hospital for 2 weeks. After a course of strong oral antibiotics he is back on track and is as active and hypo as usual!

Update 31st December 2008

Joe has been quite poorly for about 6 weeks now with one viral infection after another (colds, coughs, temperature). This has lead to him being put on a strong oral antibiotic for 2 weeks and if that does not shift the Psuedomonas infection he is fighting, he is to go in to hospital for 2 weeks. We are keeping everything crossed that he will not need IV’s as he is terrified of needles – here’s hoping the antibiotic works.

Thank you to everyone who sent Joe a Christmas card, he’s loved getting lots of post over the Christmas holidays. Thank you very much to the person who sent Joe letters from various Reindeer over a 2 week period, he really enjoyed reading the letters. We were overwhelmed with the presents sent to Joe this year – about 20 in total. He loved every one of them. Thank you for everyone’s generosity.

Update 13th December 2008

Thank you for the big box Joe received today for Christmas from a Company based in London through Post Pals. He’s put it under the tree to open on Christmas day – although he’s itching to open it now!

Thank you for the package from Post Pals too and the quilt he received last weekend from Love Quilts – he was really pleased about that.

Thank you for all the lovely things Post Pals does for Joe – he gets great pleasure out of the post he receives.

Update 21st November 2008

I just wanted to say thank you very much to whoever sent Joe the jigsaws. He’ll be really pleased with them, especially the Spiderman one! I haven’t opened the large one, I’ve left that for him to do when he gets in from school.

Update 28th September 2008

Joe continues to keep relatively well although we are aware that inside things are not as good as they should be for a child his age after his Annual Review results last month. He has a significant amount of scarring on his lungs showing deterioration.

On Wednesday we are going to EuroDisney for Joe’s Starlight Foundation Wish so he can have breakfast with Mickey Mouse – he can’t wait! He loves Mickey Mouse.

Joe hasn’t had much post recently but loves receiving any post addressed to him, no matter how big or small.

Update 29th May 2008

Joe remains very well. It is his annual review on 3^rd June so we will really be able to tell then what is going on inside.

Thank you to all who sent Joe a birthday card or present this month.

Update 30th April 2008

Joe continues to keep well.

We would like to thank everyone who has sent Joe a card, a letter or a small gift this month – he is always very excited to receive post and it makes him very happy.

Story written 2006

Jessica was diagnosed with an inoperable brain tumour on the 14th February 2003. Jessica then received three lots of chemo but unfortunately the tumour grew bigger so chemo was stopped.

We then had a meeting with the neurosurgeon who said that any further treatment would probably be a waste of time, but I could not sit back and do nothing, so Jessica had six weeks of radiotherapy and as a result of this the tumour shrunk by 95%. I am so glad that we didn’t take his advice because we know that Jessica would no longer be with us if we had.

Jessica’s prognosis is still uncertain but we still have her with us and we treasure everyday.

Jessica has a lot of problems due to the tumour and the treatment received; her memory is very poor, she has concentration problems, tires easier, has poor balance and falls over quite a lot. Before she was ill she did disco, Latin American dancing and tap. She can no longer do these, but enjoys dancing indoors holding onto a chair or table or even a door frame. We can not imagine a life without Jessica.

Update 13th January 2008

Update 4th December 2007

Jessica has had quite a good month with no more tummy pains, which have all settled down. We have an appointment to see the neurologist on Monday 10th to see what they are going to do about the high pressure and Jessica is quite worried about this.

Jessica is now looking forward to Christmas and has written a list as long as your arm for what she would like. We wish everyone a happy Christmas and new year at post pals and to everybody who writes to Jessica, Nicole, Chris and Jack – they all really enjoy receiving post.

Update 9th November 2007

Jessica hasn’t had a good month. She had to have a lumber puncture to test the pressure in her head and unfortunately it was high, so now we are waiting to see if she needs to have a shunt. On top of all that, Jessica is in hospital with suspected appendicitis.

Thank you for the cards, emails and post this month.

Update 30th August 2007

Jessica has had a good summer holiday. She is in Corfu at the moment and is due back on the 8th September.

She has an appointment with the neurosurgeon on 12th September.

Thank you to Eleanor for the book – Jessica has taken it to Corfu to write her diary in.

Update 2nd July 2007

Jessica’s scan results were good and there has been no change from last years. Jessica has been very unstable though for the last couple of months so the doctor is sending the images to the neurosurgeon to have a look at. He is wondering whether she is having periods of high pressure in her brain and this is causing her to fall over more and her memory is quite bad at the moment. I haven’t heard anything yet so hopefully nothing is wrong.

Thank you once again for the cards and gifts – you are all very special people. Special thank you’s for the 2 bracelets Jessica received this month – one was a fairy and the other a handmade one. They were both beautiful. Also for the notelets from Israel – they are lovely and i think Jessica has used them already.

Update 3rd May 2007

Jessica has been well this month, although a little unsteady on her feet, but i think it’s the change of season. Jessica is having her MRI scan on tuesday 15th May.

Many thanks to everyone who has written to Jessica.

Update 1st April 2007

Jessica has had a good month and is looking forward to Easter and the holidays. Thank you to all who have written to her this month.

Update 2nd March 2007

Jessica has had a good couple of months; she really enjoyed her birthday party and got lots of presents. She went to the ice show in Brighton and really enjoyed that. Thank you to everyone who sent Jessica a card, present or email as she so enjoys receiving them. Thank you so much.

Update 5th January 2007

Jessica has had a lovely Christmas. She has been well and is now looking forward to going back to school and at the moment is busy planning her 13^th birthday party.

Jessica says thank you for all her lovely Christmas presents, we were overwhelmed by the amount she received. Thank you to Kate for the big box full of things and it was nice of you to send a photo as well. Thank you to the elves, thank you to Judith (the headband is really nice, did you make it yourself?) and thank you to Julie. A big thank you to everyone who has sent a card or present, we think you are all really wonderful people.

Update 1st December 2006

Jessica has had a good month and is now looking forward to Christmas. We have just heard that we have now got some funding to go towards a new wheelchair for Jessica and hopefully the chair will be here in the New Year.

Jessica says Merry Christmas and a happy new year to every one who has taken the time to write to her, to send emails and sent little gifts.

Jessica says thank you to Kate, Judith and Julie for their regular letters and pressies all through the year. Please don’t be offended if i have left anybody out! We would also like to say thank you to all the people who emailed and wrote due to the Martin Lewis website.

Update 17th November 2006

Jessica has been a bit wobbly so far this month. I think it is a change in the weather, she doesn’t like the cold, her hands and feet turn blue. Jessica has received lots of emails this month and i saw that post pals has been posted on the martin lewis site, what a great idea. I am taking Jessica to the mayflower tonight, we are going to see the nutcracker as Jessica used to do ballet – she passed her first exam with honours. I am sure we will have a great time.

Update 5th October 2006

Jessica has had a good month and we had a lovely holiday in Cornwall. Two weeks ago Jessica went to London to make a promotional video for over the wall gang camp. The other star was Vinnie Jones and she had a lovely day and Vinnie was very nice. Jessica has an appointment with her neurologist on Monday hopefully all will be well.

Love to all who have written to Jessica and also thank you to those who have written to Chris, Nicole and Jack – they have really enjoyed getting post too! Special thank you to Kate for the card she sent Chris with the cars on.

Update 31st August 2006

Jessica has been fine and we are going on holiday on Saturday to Cornwall so we are hoping that the weather gets a bit warmer. Jessica has been on holiday to Dorset with the over the wall gang camp. If any of you haven’t heard of them have a look at their website they are a wonderful charity they provide holidays for seriously ill children. Jessica has been 3 times now.

I can’t believe the children are going back to school on Monday; the holidays have gone so quickly. Once again thank you for all the wonderful cards letters and presents.

Update 5th July 2006

Jessica has started her new school and has settled in really well. She has been very well this month although the hot weather has made her very tired.

She is enjoying her posty and says a big thank you to everyone who has written to her and sent a gift.

Update 9th June 2006

Jessica has had a good month; her scan results were brilliant and there has been no change in the tumour mass. We also won our appeal to get Jessica into a special school and she starts on Monday. Thank you for all the gifts and cards, Jessica particularly liked the glass paints.

Update 7th April 2006

Jessica has been quite well this month apart from a cold. She has got an appointment with her neurologist on Monday, so fingers and toes crossed everybody.

Jessica would like to say thank you to Becky for her lovely cards and gifts. Also to Julie for her gifts and to Caroline for the beautiful bracelet. Thank you to Anna for the cat in the hat folder and the Garfield cartoons and thank you to Cherie for her letters from America. She has really enjoyed opening all of her letters, they really cheer her up. Thanks to everybody who has taken the time to write such lovely letters, they really do help.

Story written 2008

Jemima was diagnosed with Acute Lymphobalstic Leukaemia on 13th June 2007.

She had been off colour for a couple of weeks and lacking in energy. We were on May half term holiday when we noticed she was unable to keep up with her sister Emily and couldn’t even walk up a full flight of stairs without sitting down before the top. After half term, she was in a rounders match at school and struggled to complete a full rounder before exhaustion took over. With all of these symptoms, we took Jemima to the GP who prescribed antibiotics for tonsillitis and said to return in a week if she was no better.

In this week Jemima did not improve and she also started to develop bruises on her legs and we were becoming more and more worried. We went back to the GP and aired our views whilst trying not to frighten Jemima. Bloods were taken and sent off to the LRI and that evening we received the phone call to go straight to hospital as a matter of urgency. Our worst fears were confirmed the following evening and Jemima began her 2½ year treatment of chemotherapy the next day. Since then, Jemima has been writing her blog so she can keep friends and family up to date.

Update 24th July 2009

Thank you all so much for all the mail you have sent over the past couple of years. I am finishing treatment very soon and feeling so much better now. I have really enjoyed opening all the cards, letters and gifts you have sent me and so has my sister. I may become a postpal myself very soon too!

Thank you very much Kate and also Viks so much for everything over the last couple of years.

Update 9th February 2009

Mima is progressing through the maintenance stage of her treatment. She has been extremely brave as usual even though she has her leg in half a cast at the moment due to some strain in her ligaments. She is very keen to join in with as much as she can at school and really struggles when her energy levels are not up to it. To compare herself with other girls in her year is very tough as she can’t even keep up when running to lunch! She does have some wonderful friends though who look after her extremely well. Mima has an excellent outlook and tends to be cheery most of the time.

Mima says thank you so much to everyone who has written to her and also for the fabulous pressies. She absolutely loves her horse cushion and sleeps with it every night.

Update 20th October 2008

Mima has been feeling pretty good recently apart from the usual week or so of feeling yuck whilst on steroids. This passes reasonably quickly and she is back to her usual good form.

Mima is undergoing a few tests at the moment as she had a funny turn at school last week where she lost about 15 minutes and didn’t know where she was. We think it was probably a little seizure but we are going to see the neurologist and have another MRI scan. When she had a big seizure last year, the MRI showed a lesion on the left side of her brain and the EEG showed some abnormal activity in her brain too so we just want to see what is going on now. Mima is very worried about it all and just wants to carry on as normal a life as possible so we are trying hard to do so!

Thank you to everyone who has sent cards and postcards this month. Mima’s face really does light up when her post comes home. She sticks everything to her bedroom walls so she can keep looking at the cards and letters.

Update 30th August 2008

Mima has had a really good summer without any unscheduled hospital visits. Her hair is growing back beautifully and we are all guessing whether it is going to be curly or straight! She looks extremely well and has managed to join in with most activities over the holidays.

School starts again on Wednesday so Mima is really hoping she will be able to go and participate in as ‘normal’ a school life as she can.

Mima has really enjoyed receiving all the cards and postcards. They have made her smile and she loves hearing from so many different people. Thank you so much everyone. Mima particularly enjoyed her letter from Percy the dog and she has written back but does not know where to post the letter to? Thank you very much to everyone who has written to her. Mima has been very busy with her summer activities book and made lots of things from it. Thank you also for her lovely cupcake charm, lip balm and stickers. She just loves receiving all this new post. Post Pals is a fantastic idea and the post Mima has received has really lifted her over the past month.