Our Pal - Jordan T

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.