3rd January 2018

Update 31st October 2025

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 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 https://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.