Jordan T

14 June 2012

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 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

Please could you put update the boy’s pages to let people know we have been having on going problems with our computer, so people know we are ok and not ignoring them. Thank you for the lovely posty the children have received lately. I did send a couple of ecards before the pc was dismantled, but obviously haven’t been able to email people to thank them for some time now.

The boys are fine and Alex is about to have a BIBIC assessment (at the British Institute for the Brain Injured Child) which we hope will give us a few ideas about how to deal with some behaviour issues we have been having lately.

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.

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Joe B

14 June 2012

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

Joseph’s health has deteriorated considerably over the past few years.  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.   His lung function has dropped by over 30% in the past year.  He has frequent chest infections and IV antibiotics for 2/3 weeks every 2/3 months.

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


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 3rd 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.

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Jessica R

14 June 2012

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

Post Pals has been fantastic and Jessica has really enjoyed getting all her post. I think it is now time to put her on the moving on page though as Jessica has remained well since she joined, although i will of course inform you if there are any changes to Jessica’s health, good or bad, although hopefully not bad.

Thank you to all of the children’s elves this Christmas. The children all loved their presents and Nicole was really pleased with the NOW 68 and the charm making machine. Jack loved all his goodies, especially the hand warmer and the elastic band ball. Chris loved his socks. Thank you to everyone who sent the presents, we are very grateful to you all. I also want to say a big thank you to Sylvia for the tickets to see grease – Jessica and i really enjoyed the show, it was fantastic, thank you so much.

Thank you to all the Post Pals team and to everyone who sent letters, cards and gifts. You are all very special.

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 13th 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.

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Jessica M

14 June 2012

Story updated February 2011

Jessie was diagnosed with a childhood cancer ganglioneuroblastoma when she was 4 years old. She had 6 doses of chemotherapy and a 9 hour surgery to remove her 15cm tumour; however the surgeon at Great Ormond Street hospital only managed to remove 25% of the tumour. Unfortunately Jessica developed scoliosis following the surgery and started wearing Boston back brace given by the NHS. This Boston brace didn’t halt the scoliosis progression at all and that is why we decided to go abroad where they made a Cheneau brace for Jessie. I cannot praise the Cheneau brace and the guys who made it in the Czech Republic more – the brace didn’t improve the scoliosis but held it more or less stable for a good 2 1/2 years. We were hoping to postpone her spinal growth rods surgery for as long as possible and it looked like we could postpone it until Jessie is 11 years old – then they could only do spinal fusion!

Unfortunately, about 4 weeks ago, Jessie started limping, tripping over and losing a sensation in her right thigh – she had her routine MRI scan brought forward and we found out that her tumour is bigger than it was before. It grew slowly for years and it started pressing onto her spinal cord causing her all these symptoms – symptoms of spinal cord compression! The tumour started growing not because it’s malignant but actually because it is benign and is maturing into a fully benign tumour which is great news but not so great when it’s pressing onto a spinal cord.

We were so happy with her stable scoliosis and in the end it’s the growing tumour that is bringing this operation forward.

So, Jessie is having a SURGERY and I mean a major surgery – she is actually having two surgeries in one and it will most likely happen on the 14th of February. These two surgeries in one will involve taking her 15cm long tumour out of her spinal canal plus inserting spinal growth rods to straighten the spine.

But to make the matter just a little more complicated, she contracted the so dangerous if it’s gets into an open wound, MRSA infection, so we must do our best for her to get rid of it before the surgery. We haven’t got much time, but given the emergency of this surgery, I think they will decide to go ahead even if we don’t get rid of it as, if they delay the surgery, Jessie could be paralysed – she takes steroids to reduce the pressure onto her spinal cord at the moment.

We have an appointment with Jessie’s oncologist, neurosurgeon and orthopaedic surgeon on Tuesday to discuss the surgery and the risks and outcomes.

Update 10th January 2012

I am sorry for not updating for such a long time. Life seems to be back to normal (for now) with Jessie recovering so amazingly well following her complicated surgery in February.

In November, Jessie received a Bravery Award from the Stagecoach Theatre Arts for being brave, amazing and wonderful, during her tumour and scoliosis treatment. It was a special day for all of us. This day kind of sealed all of her treatment, hospital visits and ups and downs, and we celebrated this amazing achievement with an invitation to see Shrek the Musical at the Drury Lane Theater in London. Jessie really loved it and so did I.

Jessie also achieved amazing results at school considering she missed 3 months of school in year 4. She is in year 5 now and her lovely teacher told me at our last parents and teacher evening that she is better than expected in Maths and English and way in advance in Reading. I was so pleased to hear this. She worked so hard on catching up on the school work and she did it.

All of Jessie’s scans and x-rays confirmed that she’s healing very well and so far there hasn’t been any progression in her scoliosis curve. She is walking very well now and enjoying life to the full. Her next MRI scan is booked for March and x-ray for April. If her curve gets bigger by then, Mr Tucker will plan an extension surgery of her rigid rods by converting her rods into a sliding domino. This might be done in the summer so hopefully if all goes well and fingers crossed, we should have a pretty uneventful 7 months. I really hope this will be the case.

So, until then, Jessie will move to the “moved on” category on Post Pals and return back should she have her surgery in the summer. I would love to say a heartfelt thank you to all of you wonderful people who sent Jessie cards, letters, stickers, pressies etc. Also a huge praise goes to all the girls at Post Pals for doing such a wonderful job. You have all definitely put a smile on her face and more than a one!

Happy New Year to you, good health, love and happiness!

Love from Jessie and Stana xxx

Update 6th July 2011

Jessie had a great month as she seems fully recovered from her surgery in February. The only problem she has at the moment is that some of the nerves were cut during the surgery to take her tumour out and these nerves are not sending signals to her tummy muscles to contract, so half of her tummy is not contracting when pulled in. I have spoken to Jessie’s oncologist and she told me that there is not much that can be done with this at the moment.

Apart from this, Jessie is enjoying her “back brace free” life to the full with lots of activities and we also attended a fantastic Post Pals party where we met some of the sweet Pals and also the amazing girls dedicated to running Post Pals. We had a lovely day full of fun and sure we have plenty of great memories to remember this day.

Jessie also received her end of school year 4 report and I was glad to read that missing 3 months of school didn’t stop her from achieving better than expected English Literacy and Writing grades and as expected Maths grades. I am so proud of her, I really am.

As some of you might know, I am teaching Jessie Czech language at home so she can confidently speak to her grandparents in the Czech Republic and she is doing Year 3 exam on the 1st of September – she simply learns the same curriculum that Czech children are, visits Czech school when we are abroad, and does the same tests that her fellow pupils do. She’s been putting a lot of effort into this and I can proudly say that she is fluent in Czech speaking/grammar/writing. Her Czech teachers are very impressed.

Life simply feels normal for the first time in 5 years since Jessie’s cancer and scoliosis cancer in December 2005 and March 2006 – I want this feeling to last forever!!! Please pray for Jessie to continue to thrive.

Jessie was overwhelmed with the number of cards, letters and presents from you guys – last months was simply amazing and Jessie loved each and every letter she received from Holland, Italy, UK, Brazil, US, Sweden etc.

You guys simply rock – thank you ever so much!

Update April 2011

After 4 years of wearing her back brace, Jessie was told today to put it in a bin by her orthopaedic surgeon. She actually cried tears of joy and we are all very happy for her. This is obviously a very big deal for her as she is a 9 1/2 year old girl developing her own style, sense of her body, figure, and having to wear a back brace was getting increasingly upsetting.

It was all good news at our last orthopaedics appointment 3 weeks ago too. The surgeon were really pleased with his surgical skills done on the 14th of February when Jessie had her tumour taken out and her spinal rods inserted to slightly correct her scoliosis, as well as with Jessie’s better than expected recovery.

Although, I am aware than any rigid plan cannot be made for Jessie’s future, as one never knows how much she will grow in the next few years and how her spine will behave, but they told us that in the case of her growing a lot in the next few years, they will simply just cut her existing rods and inserts “sliding domino” piece and that way her solid rods will be able to extend. Apparently, this can all be done in 1 hour surgery. Excellent news!!

The other good news I didn’t expect to hear today is that apparently she might not even need the big and risky surgery called spinal fusion, where all of her curved vertebras would be fused into one solid spine, as apparently the nature of her February surgery might help her spine to fuse spontaneously without any surgical intervention.

These of course are IDEAL SCENARIOS one would hope for, but for now we just need to wait and see what happens in the future.

Our oncology appointment was positive as well and her tumour appears to be stable. The only slight issue at the moment is that some of the nerves were cut during the surgery so only muscles on right half of her tummy are working and the left part is weak and not responding. Jessie’s oncologist is trying to find out if there is anything that can be done to resolve this problem.

THANK YOU EVER SO MUCH for your post, presents, cards, stories – Jessie reads each and every one of them with an excitement and interest. Your kind post is so much appreciated!!!!

Update 7th March 2011

Unfortunately, in the first week of January, Jessie started limping, tripping over, having problems walking down the stairs and losing a sensation in her right thigh. I took her to the hospital 4 times and the doctors all seemed to say that she is fine however her oncologist brought her routine MRI scan forward and we found out that her tumour is bigger than it was 4 years ago. It grew slowly for years and it started pressing onto her spinal cord causing her all these symptoms – symptoms of spinal cord compression! The tumour started growing not because it’s malignant but actually because it is benign and is maturing into a fully benign tumour which is great news but not so great when it’s pressing onto a spinal cord.

We were so happy with her stable scoliosis and in the end it was the growing tumour that brought Jessie’s operation forward and made it a matter of urgency.

So, Jessie had a SURGERY and I mean a major surgery on February the 14th. The surgery took 9 long hours and her lovely neurosurgeon removed most of the tumour inside of her spinal canal to relieve the pressure it created. Then Jessie’s orthopaedic surgeon inserted spinal rods along her spine and slightly straightened her scoliosis – my guess is that her scoliotic curve reduced from 65 degrees to 40 degrees which is a good degree of correction especially when they only planned to take the tumour out and stabilise rather than straighten her spine.

The doctors told us that the risk of paralysis from these two difficult surgeries could be between 30 and 40% but Jessie is moving her legs so we are absolutely thrilled.

Today is day 20 post surgery and we are happy to say that Jessie is WALKING and most importantly she is NOT tripping over, limping etc. It looks like the surgery was a success. She also stopped her high dose of steroids to relieve any pressure onto her spinal cord on Friday so she is still very chubby in her face but this swelling due to water retention should go down in about 8 weeks. Jessie is not allowed to go to school for further 3 or 4 weeks so I am doing home education with her.

One of our main concerns at the moment is whether Jessie will be able to grow properly due to her fixed non extendable rods along her spine. She has 12 free moving vertebras through which she can grow but the rest is fixed and this will restrict her growth.

Jessie will need a proper physiotherapy to get her walking and moving properly again after such a big surgery so we are fundraising for her to be able to go to the Czech Republic for an intensive 6 week inpatient rehabilitation treatment for children with neurological problems, scoliosis and post-surgical issues.

I would like to express our heartfelt thanks to all of you who sent Jessie post/presents to cheer her up during such difficult time for her and as she recovers from her big operation. I am sorry but I cannot individually thank you by naming you here as simply there were so many of you but we are overwhelmed by the lovely and caring post from all of you. Jessie was also pleased to get post from the UK as well as from Holland, Sweden, Finland and the Czech Republic (she can also read and speak Czech). Thank you again.

Jessica has rejoined Post Pals after moving on in March 2008

Update 31st March 2008

Jessie has not been well with tonsillitis and a cold for two weeks now but she is getting better day by day. We went to Holland for Easter and we had a really nice and mainly relaxing time as the weather was pretty bad there.

After getting together with Bobby’s fund, we started a fundraising campaign in order to raise money for Jessica to receive further treatment in America, as her tumor still remains very large.

Big thanks for the wonderful post this month go to: Maria Carney, Helen Fulcher, Judith Shiel, Vickie Miller, Kate Dee, Maria, Alberto, Berenice, Callum&Emma, Julie, Chloe G and Jenn.

Update 29th February 2008

Jessie had her half-term holiday last week so we decided to visit my sister and her three children in Germany. We all had a fantastic time there and Jessie loved playing with her cousins, going swimming, visiting a castle and a horse centre. Jessie was sad to leave her great and cheeky cousins.

Jessie is back at school having a pyjama party today in aim of RSPCA and I am busy with getting all the information needed for second opinions in regards to Jessica’s tumor that remains wrapped around her spine. I hope we get some clear opinions soon.

After spending three great days in Devon where we were invited by Bobby’s family (Bobby was diagnosed with neuroblastoma stage 4 cancer 2 1/2 years ago and is a picture of health now) and getting advice about complete natural holistic healthy lifestyle which Bobby follows, we decided to follow Bobby’s routine and we were kindly supported by Bobby’s fund to make it all possible. We purify our own water, juice fresh juices, clean our air at home and most of all, Jessica eats fully organic, freshly prepared meals, plenty of fruit and vegetables. We always ate very healthily in our house but this time we are taking it even more seriously. Jessie knows that she is not allowed sweets, chocolates, junk food and she knows why it’s not good for her.

We are also seeing a private complimentary medicine doctor once a month and he checks Jessie’s blood, urine and prescribes her vitamins and food supplements regime to improve her immune system and possibly to improve her chances of fighting against cancer.

Jessica’s next MRI scan is on Wednesday the 2nd of April. Two months earlier than normal because of the little scare we had in January.

Jessie continues to be happy, full of energy, loving and sweet as ever and I love her for being so positive, kind and caring despite everything that happened to her in the past.

Special thank you’s this months go to:

The Post Pals Team, Jenn 2 for the cute Valentine’s card and very sunny sunflower card, Erin F’s nanny and grandad for a lovely sparkly card, Julie and Monty the doggy for a great hand made card, Nicky for the great jokes, Karolina from Finland with the same Birthday as Jessie but 12 year old ;-), secret Valentine’s sender Helen F for the wonderful hand made cards for Jessie to use or keep, Becky for the sweet hand made card with a beautiful picture of a white horse which Jessie loves so much, Kate Dee for a letter outlining her London trip to GOSH which we are so familiar with and of course to Colette for letter, card and that gorgeous bracelet, glamour make-up bag, cards and notes. THANK YOU SO MUCH!!

Update 29th January 2008

We had a wonderful Christmas time in the Czech Republic and a week of skiing in Slovakia. We both loved the sun and snow in the mountains and Jessie learned to ski and use the lift in 2 hours with help from a ski instructor. We miss the snow!

SCOLIOSIS: Jessie has got a new bigger brace and she is adjusting very well to it.

TONSILLITIS: Jessie had another episode of tonsillitis (6 or 7 in total in 1 year) so I decided to go ahead with the tonsillectomy on April 7th. She will need to be off school for 2 weeks but they have spring holidays at school anyway so she will not miss out on school.

CANCER: We went to see Jessie’s consultant at GOSH last Thursday and she told me that according to the radiologist’s report, Jessie’s tumor is growing and pressing on her spinal cord despite her completely satisfactory neurological examination that day and urine catecholamine’s (tumor markers) lower than the last time. I was shocked, scared and worried but I hoped that she’d made a mistake because Jessie is looking like a picture of health at the moment. I asked her to review it again with the MRI radiologist in the afternoon and to call me back. She called me back 4 hours later after they had reviewed all 100 MRI scan pictures and they think they raised the alarm unnecessarily and Jessie is fine and she will not require all she told me 4 hours earlier (CT scan, MIBG scan, bone marrow aspirates, sonograph, steroid injections, radiotherapy)!! Now, what do you think? On one hand, I was so happy to hear that, but on the other, I am furious and I am now in the process of getting copies of all of Jessie’s medical files and MRI scans. I am going to send them all around the world for second opinions with the help of Kevin (dad to Bobby diagnosed with neuroblastoma stage 4) and his fund I can’t let the doctors make another mistake like this. What if they were correct the first time? What if??

BIG THANKS this month to Kate Dee, Ellyn Yeager, Despina, Julie & Alan & Sue & Peter Barret, Post Pals team, Louis Woodcork and everyone else for the lovely post and presents for Jessica.

Update 17th December 2007

Jessie had a chest infection and high fever last week. She finished her 5 day course of antibiotics today and hasn’t got a fever anymore. We are flying to the Czech Republic tomorrow and she will be seen by her lovely paediatrician there on Wednesday for a check up. I think she might need more antibiotics as her cough hasn’t cleared yet.

Jessie is very excited about going to Czech for Christmas and she has been talking about skiing for ages. She just can’t wait. I hope she will be able to do it when she gets better after the chest infection but she knows that she has to take it easy. I had tickets to Jack and the Beanstalk pantomime and a time slot to see Father Christmas at Harrods last weekend but I just couldn’t take her! I really looked forward to treating her to those two special treats but she really needed to sleep and just rest properly for 5 days. She didn’t feel like doing anything but watching her DVDs. I gave the tickets to pantomime and Harrods to two of Jessie’s friends.

Our appointment with the orthopaedics went well and Jessie’s scoliosis is stable. We are very happy that the brace seems to be doing the job.

I would like to wish you all a Merry Christmas and Happy New Year 2008. May the New Year bring only joy and happiness into your lives. Also big thanks to those that sent Jessie post in November. Every time she gets her post, she says how all those people are so kind and how lucky she is to get such lovely post.

Update 23rd November 2007

CANCER: Jessica had her MRI scan in October and her tumor is stable. Her catecholamines urine tests that determine the tumor’s activity came back good. HVA is better and VMA is slightly raised but I don’t think that’s something to worry about.

TONSILLITIS: Yesterday we had an appointment at the ear-nose-throat clinic at the Great Ormond Street Hospital and because Jessie had 6 nasty periods of tonsillitis this year already, they want to take them out next year whilst she is on her Easter holidays. I told them that I would wait and see how she does during the winter period and that I will let them know if I want her to go ahead with the operation. She would go under general anaesthetic and she would have to stay at the hospital overnight and two weeks at home. I am going to think twice about this operation because Jessie has been through enough already and I know that she will be in pain after this operation for a while.

SCOLIOSIS: Jessie is getting used to her brace and I am so proud of her. On some occasions we take if off (parties, swimming etc.) but most of the time it’s on. We have an appointment to see the orthotics and the orthopaedics in December and I think they will be taking new measurements for a new brace as Jessie has grown a lot.

Again, I would like to say a big thank you to all that sent some lovely post to Jessie, especially Nicole D, Julie Barrett, Kate Dee and the Post Pals team for the Halloween sparkles. Jessie loved it! Thank you guys so much.

Update 6th September 2007

Jessie had a fantastic summer. We visited four countries – Slovakia, Czech Republic, Greece (Rhodes) and Mallorca. Before we left for Slovakia, Jessie had a nasty episode of viral tonsillitis and an even worst episode of tonsillitis and candida in her mouth along with 6 days of fever on our holiday in Mallorca. Despite the illness, she enjoyed pony riding, T-shirt painting, salt bottles making and a mini club on our holiday in Mallorca, but most of the time she spent sleeping in a hotel room. We were sent on this great holiday by the Starlight foundation and I would like to say big thank you for giving us the opportunity to visit this beautiful island. Our holiday in Rhodes was fantastic and Jessie loved swimming in the pool and the sea too. She learnt to swim there. Jessie saw her grandparents on our stop in the Czech Republic. She loved horse riding there and we bought her a new bike, so every morning she took her grandad for a long ride. We all had fun there. The weather was great and we enjoyed the summer to the full.

This month we have some appointments lined up. Next week, Jessie should have another MRI scan to see how her tumor wrapper around her spine is doing, but she is still recovering after her nasty tonsillitis and candida, so I am not sure if she will be fit enough for general anaesthetics. The week after, we are seeing the spinal clinic at GOSH and after taking new x-rays of Jessie’s spine, we will see if her scoliosis has progressed or not. We also have an appointment at the orthotics department to review Jessie’s brace.

Now the exciting news – Jessie will be 6 on the 18th September and she will have a joint birthday party with her fried Sade on Saturday 22nd September. They can’t wait!

I would also like to say big thank you to all those still sending letters, presents and postcards to Jessie. She loves getting them.

Update 3rd July 2007

Last month we saw Jessica’s orthopaedic doctor at GOSH and were told that Jessica’s scoliosis progressed from 20 degrees to 40 degrees. She now has a congenital juvenile progressing scoliosis which is very difficult to treat. She started wearing Boston brace Jacket and she must wear it 23 hours a day in a month’s time. She needs to get used to it gradually but it’s not easy. The jacket is too tight and sometimes she finds herself short of breath. We are facing a tough summer with the brace and we can only hope it helps and Jessica avoids a spinal fusion surgery in the future. I am seeking a second opinion as to whether the Brace jacket is the best option at the moment.

On a positive note, I have just received an e-mail from the Islington children’s physiotherapy service and after a long 9 month wait, Jessica has reached the top of their list and we can now call in to arrange a physiotherapy appointment for her weak stomach muscles, lordosis and scoliosis.

Thank you to Chloe G (PostPals), Susanna and family, Laura H (PostPals), H and Bethan, Julie Barrett and Kate Dee. Big thanks also to PostPals for the Finding Nemo adventure game and to Jaime Matthews for the 2 artist’s canvases, brushes and pastel dye sticks.

Update 4th June 2007

Jessica’s MRI scan results came back and are good. No change in the size of the tumour and the urine catecholamines improved. We are very happy with this news. Jessica continues to be relatively healthy with few colds and she loves going to school.

Thanks to the Christian Lewis charity we were able to visit Disneyland at discounted room rates and we also received free VIP passes so we didn’t have to wait for any rides. Jessie really enjoyed Disneyland and she loved meeting Mickey and Minnie mouse. We also stayed 4 days in Paris and did a lot of sightseeing. It was a great and magical holiday.

On 3rd of June I did the Race for life for Cancer research and at the moment we are collecting our sponsorship money.

Jessie is awaiting her 6 monthly appointment with an orthopaedic surgeon at Great Ormond street on 8th June to check up her scoliosis.

Thanks to Post Pals for your continued support.

Update 29th April 2007

This month I took Jessie for a long holiday in the Czech Republic. We stayed there for 24 days and I took her to a children’s rehabilitation centre for her to learn some exercises for her weak stomach muscles. Jessie did lots of exercising and swimming, but she also received a massage, had a jacuzzi, did a hipotherapy and ergotherapy every day. She really enjoyed it but towards the end she fell ill with tonsillitis resulting in really high fevers for 4 days.

Jessie is due her next MRI scan on Tuesday the 1st of May. We hope for good results.

Thank you to everybody that sent Jessie lovely Easter cards.

Update 1st March 2007

In February we received Jessica’s MRI scan results. Her tumor is still the same size so that’s good news for us. Jessica will continue with 3 monthly MRI scans to keep an eye on her tumor. Jessie had her pre-school boosters but no MMR this month and unfortunately the place where she had the shot got infected and we had to go to the hospital one night. Jessie received antibiotics and her arm is better now.

Jessie still loves going to school and also her saturday school of performing arts. During the half-term holidays, I introduced Jessie to ice skating which she has fallen in love with and we also managed to go to the cinema, horse riding, swimming and lots more.

Thank you to Alan and Julie Barratt, Kate Dee, Nicky, Aiyssa from the USA and others for sending some lovely cards and presents.

Update 25th January 2007

It has been quite a while since I have up  dated and I apologise for this. I took Jessie to the Czech Republic for Christmas to see her grandparents and we stayed there for 25 days. She had lots of fun including skiing in the Czech mountains. She spent 2 days in the ski school and absolutely loved it.

Jessie was supposed to start school full time in January but fell ill with tonsillitis and required a 5 day course of antibiotics which resulted in the postponing of her pre-school boosters. She will receive them after her MRI scan due on tuesday the 30th of January. We all pray for good MRI scan results and for her tumor being stable.
Jessie started school this week and she also attends Stage coach school of performing arts every saturday morning which she really enjoys. They have 30 minutes singing, 30 minutes dancing and a 30 minutes acting session.

I would like to say a big thank you to everyone at post pals for sending Jessie all those wonderful Christmas cards and a cool Christmas parcel from post pal ELF Chloe G. She loved it!!!

Update 22nd November 2006

It’s official! Jessica’s scoliosis has definitely improved. We saw Jessica’s orthopaedic doctor in October and I asked him if he could measure up the spine pictures taken in April and in September to compare. We were told in April that Jessie’s scoliosis is 23 degrees and that she doesn’t need bracing. Well according to the doctor in October (and I saw him measuring it up) it wasn’t 23 but 32 degrees. Somebody made a serious mistake in April but luckily for Jessie her scoliosis has significantly improved from 32 degrees to 20 degrees measured in September. That’s great news! I am so happy! It’s now clear that Jessie’s scoliosis was caused by the surgery in March and sorted itself out on its own. Let’s pray for Jessie’s scoliosis to continue to improve so she doesn’t require any bracing or rods operated in the future! I have sent an official complaint to find out who made such a serious mistake and hopefully we can get some positive results soon.

Jessie had her MRI scan in October and we learned that it hasn’t changed in size so it’s still about 10x5x4cm big wrapped around 8 of Jessica’s vertebrae’s. The next follow up appointment is planned for January.

Jessica started school in November and she really likes it. She only goes in every afternoon until she receives all her pre-school boosters in January-February but that’s enough for her I think.

We have been having lots of fun lately and if you would like to find out more, please go to Jessica’s website.

Thank you post pals for the continuous support. Jessie loves it! You guys rock!!! We love you!!!

Update 29th September 2006

Jessica spent a lovely four weeks in the Czech Republic with her grandparents and family. In the first week of our visit Jessica fell ill with Broncho-pneumonia and had to take antibiotics for 10 days. She had a really high temperature and obviously a very bad cough. She pulled through in no time and enjoyed the rest of her holidays. Jessica went horse riding a lot, played with her friends and enjoyed lots of visits and activities. She was sad to leave her grandparents but we had to return back to London for our follow up appointment with Jessie’s oncologist at Great Ormond Street Hospital.

Whilst in Czech, I saw many doctors including neurologist, rehabilitation doctor, oncologist and pediatrician and learned more about Jessie’s tumor and scoliosis. I was pleasantly surprised by the kindness and care of all the doctors that have taken interest in Jessica’s condition whilst abroad.

We are currently experiencing some problems with appointments at Great Ormond Street Hospital but I hope this will be solved in the near future.

Jessica, my lovely darling, is full of energy, laughter and optimism despite the terrible illness she is fighting against. On Monday October 2nd Jessica has another MRI scan to see the current situation of the tumor wrapped around 8 of her vertebras.

We all hope for the tumor to be of the same size (possibly smaller) as it was 3 months ago with no evidence of growth or more eroding of Jessica’s vertebras.

Thank you to everyone at Post Pals for sending Jessie special birthday wishes!

Update 4th August 2006

This month we were told that Jessie will have to live with her tumor inside her body forever. The tumor is wrapped around 8 of her vertebrae’s and is eroding 3 of them. Jessie has also developed scoliosis but doesn’t need any treatment for it at the moment. Jessie is enjoying summer fun and apart one visit at the hospital with a fever she is doing fine and we both are very excited about a visit to the Czech Republic to see Jessie’s grandparents in August-September.

Thank you Post Pals for sending Jessie lovely post and thank you for having her on your website. Thank you also to Emily, Allan Barrett, Cherie+Itsy, Julie Barrett and Kate.

Update 2nd August 2006

Jessie spent a night in hospital due to a temperature; we think she has the flu.

Update June 2006

I wanted to say big thank you to Angel Jenny for the lovely magazine she sent to Jessie and also everybody who sends mail and presents to Jessie. Thank you also to Julie Barrett, Emily, Kate Dee, Alan, Caroline, Becky Butler, etc. Thank you! It really puts a smile on her face!

Today was a busy day starting with an appointment with Jessica’s oncologist who is getting a second opinion from an independent Orthopaedic from Birmingham about whether or not Jessie needs a back brace. She also said that she will discuss Jessie’s possible removal of the tumour as she feels it would be wise to remove the tumour as it could get bigger again and even spread. If safe, Jessie will need two more operations possibly in the autumn. We were also told that Jessie’s tumour is the most complicated and biggest of all the Ganglioneuroblastoma tumours they dealt with but if they remove it she has a good chance of survival.

Update 9th June 2006

Jessie just had her last dose of chemotherapy!

Update 27th May 2006

We have returned from the hospital this afternoon. We took Jessie there on wednesday night as her temperature reached 38.9 degrees Celsius. Immediately they accessed her port which wasn’t very pleasant this time as Jessie had a really high temperature and was very tired. Unfortunately it took three people to hold her in order to access the port. They gave her IV antibiotics as normal and it feels like we are becoming regular visitors in our local hospital. All Jessie’s blood counts dropped rapidly too so she needed a three hour blood transfusion on friday. Soon after the transfusion she got her colour and energy back. How amazing! She left hospital happy and energetic and that’s how I love to see her! She needs to be take oral antibiotics for the next 5 days and she is due a blood test on tuesday morning to see if she is fit enough for the Cado chemotherapy. Doctors suggest the chemo should be postponed as they don’t think the blood count will get back to normal until tuesday. I think so too as it would be too much for her again. We left the port accessed so she doesn’t have to have it accessed again or finger prick done. It needs to be de-accessed on tuesday though as it can only stay in for 7 days.

Update 18th May 2006

A lot has changed recently, not all good news but Jessica is still doing very well. She has developed a scoliosis as a result of the surgery and will have to wear brace and have rods put in at some point in her life. The doctors have also decided not to operate on the rest of the tumour as her spine would collapse completely, so she will have to live with the tumour inside her. I hope this is not the doctor’s last and final decision as that would be very worrying for us. I wanted to thank you for having Jessica on Post Pals as she has been getting some post already and she really loves it. It definitely puts a smile on her face.

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Jemima S

14 June 2012

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.

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James R

14 June 2012

Story written 2003

Until March of 2003 James was a completely normal little boy, more like a mini whirlwind than a human being. A few months later we were told “James has Leukaemia” and our world was turned upside down.

At the very beginning concern was raised because his legs started to ache. For the subsequent four months we took him back and forth from the hospital trying to find the cause. Orthopaedics, Paediatrics, Surgicals were all approached – no idea, growing pains maybe?

James’ stomach swelled up. We went to the hospital, and they announced that his liver was enlarged and they ran some blood tests. The following day we were ushered of to a quiet room with a haematologist (ominous) – “James has Leukaemia”. Shock, numbness, panic – he’s going to die! After we composed ourselves, the big decision was “Do we tell him? If so, how much?” We decided, tell him everything. He’s a smart kid, if we don’t tell him, he’ll ask someone else. So we explained, as much as we knew at the time. He was so understanding. “OK” he said, “get on with the treatment then, make me better.”

So, stage one – off to Birmingham for a bone marrow aspirate (a needle driven into the bone marrow of his spine and a sample of tissue taken.). The result a slightly more accurate diagnosis – “James has Acute Lymphoblastic Leukaemia.” This determines the treatment regimen and off we go to Alder Hey Children’s Hospital in Liverpool as Birmingham has no beds.

Three weeks down the line and James felt awful and could only move around in a wheelchair – the first dose of chemotherapy really knocked him for six. His stomach became more swollen due to the steroids, his bones hurt because of the vincristine, (chemo drug) and his arms looked like pincushions. You know a kid’s ill when you ask, “What can I get you to cheer you up?” and he says “Nothing, just take me home.”

I love James, everyone who knows him loves him, you will too.


Update 30th October 2007

I think the time has come for James to move on from Post Pals. During his illness you were a wonderful source of encouragement and happiness. Now that his treatment is finally complete and he is on the road to recovery, your resources would be better spent on your current group of sick children. Thank you so much for all you’ve done, James had a miserable time and Post Pals really helped to put a smile on his face.


Update 8th August 2007

James has pretty much fully recovered from the effects of his chemotherapy, although his feet are still flat and his stamina is very low.

He regularly takes time off school due to general tiredness, and although his school are brilliant about it, we can’t help worrying that missing school frequently must be bad for him.

The doctors say that he will eventually come round and be back to normal, it’s just a case of waiting and encouraging him! With any luck the long summer break will give him a chance to recharge his batteries.


Update September 2006

James is due to finish his chemo near the end of October, instead of being happy he is very depressed as he is worried about what will happen if the Leukaemia returns. It would be great to have lots of congratulation cards sent to him, as he was Post Pals’ first ever Pal.


Update 25th May 2006

James is still moody but it’s because of his pills. He’s just had his nasty monthly drug, vincristine, and has been off school all week but can hopefully get over this during half term.

Thank you to Sue Cuin and Julie Barret for sending James and myself (Philippa, his twin) lots of cards during the past month.


Update 2nd December 2005

Philippa has been in touch to say that James is doing quite well and that he wanted to say thank you to all at Post Pals for the gifts he’s received 🙂


Update 25th September 2005

James is back at school now (after 2 years at home). He is adjusting really well but finds sport and games a little hard going. With James’ determination things are settling down though and he has the teachers eating out of his hand.

Health wise, all treatment is going as it should. Counts are staying stable.


Update 20th June 2005

Thank you everyone who has responded to James’ low time. He really has appreciated the surge of cards and stickers and stuff that you’ve been sending. Thank you from him and us!

James is having a “good” time at the moment. Health fair, just suffering from the heat. But I guess a lot of people who aren’t ill are doing that too!


Update 1st May 2005

James is having a rough time of maintenance at the moment. He’s laid up one week each month with bad feet and legs, and he’s very tearful. Sadly a side effect of vincristine and the steroids. His counts are remaining promising however.


Update 31st March 2005

Not really much doing with James’ treatment at the moment, all as it should be. He’s off at a church sleepover this weekend with Philippa. It’s the first time he’s been out of the house overnight without a parent in the last 2 years, but he’s fine about it – it think its us who are having the hard time of it.


Update 5th March 2005

James is doing OK. Just seems to get really miserable once a month when he’s taking his steroids.


Update November 2004

James is doing really well at the moment. Mood swings from his steroids and irritation from his drugs. Otherwise all well. He’s in to hospital on Wednesday (24th November) to have his port taken out. It only seems like yesterday he had it put in.

James’ mum is also in hospital following a heart attack, his Dad said it was a fairly mild one, and so she’s hoping to be out around Tuesday. How ever I’m sure the family could do with some extra TLC at the moment.


Update October 2004

James and his family are taking a much deserved holiday, we hope they have a lovely time away.


Update September 2004

James is also doing ok, last week his family went to a trip to their local Snow Dome (with real snow!) organised by Post Pals, there they did tobogganing, and ice-skating, and no doubt threw a few snowballs! His Dad has uploaded photographs of the day, they can be seen here Thank you to Jon for sharing the photographs, and to the Snow Dome for kindly donating these activities.



Update June 2004

Yippeeeee!!! Finally made it to Maintenance. The Intensive bouts of treatment made James so ill that he has really been looking forward to this part. Daily pills, and monthly injections ~ what an easy life.

Still, its not going to stop until October 2006 though!!!
James is a bit more cheery now and says a huge Thank You to everyone who has mailed him with words of support.


Update May 2004

Only one more lumber puncture to go until the intensive block of chemotherapy is over, and starts on the maintenance stage.


Update September 2003

James is now thankfully in remission – which means that the original dose of chemotherapy has killed all of the leukemic cells in his bloodstream. However this does not mean that he is out of the woods. The next part of his treatment is called “maintenance” which is four-week bands of mild chemo interspersed with four-week bands of intense chemo. During this time James is expected to be neutropenic – which means that he is very susceptible and will spend much of his time in hospital. This is expected to last three years. Only then will we know for sure James has been cured.

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Jacob H

14 June 2012

Story written 2005

Jacob was diagnosed with ALL on 13th April 2005. He had been off colour for a few days and it was quickly diagnosed after a blood test. We had an initial 10 day stay in hospital and he started 3yrs of treatment after 6 days. By day 8 he was in remission which was more than we could ever have hoped for. He was however rather poorly for about 5 weeks and put on 11lbs in weight because of the steroids he had to take.

At present he is in interim maintenance, which is quite an ‘easy’ time and he has even managed to do sessions at playgroup as his blood counts were good. In just under a month he will start his first intensive treatment block and we are nervous as we do not know how he will be and how the chemo will affect him and if he’ll lose his hair or not.

As he is only 3, Jacob does not understand the ins & outs of his illness, but he knows he is unwell and has to take daily medicine (which he does with no moans). He also has a Hickman line(aka Mr Wiggly) for his bloods to be taken through and medicine to be administered. He is fantastic about this and the only problem we have over all this is when the dressings need changing – he hates it. However, he is quite proud of Wiggly and shows him off to unsuspecting people now & again!

We try to keep life as normal as possible for Jacob and treat him as we always have. Sometimes he is unable to go into public places or see friends as his blood counts are low, but he has his little sister to play with and luckily they get on well. He’s a brave little boy and a total hero in a lot of people’s eyes.

Update 11th July 2008

So, it’s all finished. Well, kind of! Jacob still needs to take his septrim for another 3 months and we still have monthly check ups at the hospital, but in essence it is all over. To highlight the point, we had to take Jacob to A&E a couple of weeks ago as he hurt his ankle. No fast track into a room this time, we had to wait with the rest of the rabble – we were treated normally!

We had a lovely family party on the 14th June and we all witnessed Jacob take his last dose of 6MP – he and I pushed the plunger on the syringe together. Of course I got emotional and wanted to hug him, but he ran straight back onto the bouncy castle!

It’s been a long journey, although I still remember the first day as if it were yesterday. I hope and pray that this is the end of it all, but I know that if it’s not, we’ll just do it all again – whatever it takes. Sadly, Henry’s stem cells were not a match, but I am confident that we wouldn’t have ever needed them anyway. I am hopeful they can be used for research or even a donor bank. I am waiting to hear from the blood service on that.

I feel that Jacob should now go to the moved on section. He and Louise have been so lucky with all the postie they have received over the years, but I feel now is a good time to move on. I hope I can still send the odd update though.

Thank you to everyone that has ever sent a smile, a postcard, a letter, a gift. Each one was met with a smile. People are so kind; one of the positives of dealing with childhood cancer is the realisation that human kindness still exists. And it is much appreciated, from all of us.

Update 4th June 2008

Jacob is really well, and at the time of writing this, has just 11 days of treatment left! D Day is the 14th June. He had his last vincristine nearly 2 weeks ago, followed by his last course of steroids (hurray!). Today is his last LP. Suddenly it all seems to be upon us so quickly and it’s a very strange feeling. We are having a family party on the 14th, the bouncy castle is booked and the fireworks bought! We plan to celebrate in a big way. In some ways it’s an anticlimax as there will still be septrim to give and appointments to attend, but no more actual chemo, what a huge thing! Jacob finally has a wobbly tooth at the grand age of 6 and a half! He is excited today as he can finally answer yes to ‘any wobbly teeth?’ that the anesthetist always asks him!

He, Louise and Henry have had some lovely things through the post, thank you to everyone. Kate, the dodgy jokes are a big hit and they dissolve into giggles every time they tell them! Derek the dog sent a lovely letter yesterday, with origami which Louise is amazed by! The Hulk was taken to bed to cuddle!

Update 9th April 2008

Jacob has a new baby brother! Henry James was born on 16th March weighing 8lb 13oz, exactly the same as his big brother! It was a smooth and quick labour and the stem cells were successfully collected by our lovely midwife who was terrified she would muck it up! Hopefully we will never need them, but they are good to have. Jacob and Louise are both very impressed with Henry and are being very good with him.

Jacob had vincristine 2 weeks ago and it was fine, but unfortunately his trusty vein that never lets him down has packed up! We have to use the other hand now. So, we came out thinking how wonderful it was that he only has 2 more lots to go and thinking we were on a clear home stretch and then he spikes a temperature on Monday (1st day of Easter holidays) and he has been on the ward since then. Not sure what we are dealing with yet, as we’re waiting for cultures to come back. There is a slight crackle on his chest and he has sore looking ears. He was pretty poorly for a couple of days, but it much improved today.

He and Lou continue to enjoy all the post they receive and they, and I, really appreciate it.

Update 4th March 2008

Thank you everyone for your continued support. Both kids get so excited when the post lady comes!

Jacob continues to do well; in fact he has done fantastically well. He had vincristine last Thursday; we think there are only 4 more to go now, an amazing thought!

They are very excited about the baby’s imminent arrival, it’s very hard not to be able to give them an actual date, but they know it is soon! I hope it is very soon!

Update 2nd February 2008

I didn’t seem to get a chance to update in January, as for a month that usually drags, I don’t know where it went! Firstly, a huge thank you for all the Christmas gifts the children received, as well as all the cards and letters. Louise adored the cards from the reindeer and got so excited every time one arrived! We had a lovely Christmas – tiring, but lovely.

Jacob did spend 3 nights on the ward in December with a high temperature and what we think was a virus, so he had an extended Christmas break from school! He also seems to suffer more after each vincristine now, so has had a few days off with that too. He’s doing well though, and is generally in fine form!

So now we’re in 2008, a huge year for us! A new baby in the spring, and then in June, what we’ve been striving towards – the end of treatment. We greeted the New Year with a mixture of nerves, excitement, emotion and anticipation. One thing is for sure, we will keep smiling.

Update 30th November 2007

Jacob continues to be well; it really is hard to believe all he has been through sometimes which is the best way to be we think! He and Louise are excited about the baby, although it’s hard to convey the time scale to them and that there’s still 4 months to go! Jacob is asking lots of questions about it too, some are a little involved, I may have to get a book!!

He has had some birthday gifts/cards through the post, although obviously has not opened them yet, he’s waiting until Sunday, but thanks to the senders in advance! He’s also had the first flurry of Christmas cards, where has this year gone?

It’s hard to believe that 6 yrs ago we were awaiting the arrival of our first child, and he was already one day late. He only made us wait 2 more days though! What a lot he has had to endure in those short years, but what a boy eh!? I knew he was one in a million the first time I held him; he’s proved that over and over.

Update 10th November 2007

Jacob is really well. He is loving school and seems to much prefer Year 1 to reception; I think he enjoys the ‘proper’ work! He is getting loads of stickers on his star chart there and had a celebration service last week for his hard work on a story he wrote. I know that any parent would be proud to watch their child get an award, but sitting in the school hall and knowing what he has been through, make it an even more special moment.

He had vincristine this week, so we are currently enjoying the joys of steroids! But the good news is his appointments for vincristine fall just right to avoid his Birthday next month, and Christmas too – hurray! His treatment certainly seems to be going to plan, and we’re lucky that we have only needed to go to hospital for scheduled appointments for a good few months now.

Thank you for all the post this last month, mostly Halloween themed which was met with much excitement!

Update 4th October 2007

Jacob is very well. He has settled right back into school and bar a cold, has been in good health. He has his next vincristine shot next week and then an LP 2 weeks after that. Oh, and we got an end date – 14th June 2008. Wow!

Thank you Julie for the Paradise Park pencil and the letter. Thanks to Karen, your cards still make the kids smile. Thank you to the ‘well wisher’ for the stamp collection pack and sparkle pencils, both have been a huge hit.

Update 11th September 2007

Sorry for the lack of updates lately, the summer holidays were a bit mad and went far too quickly! Jacob is very well. We managed to avoid any unscheduled hospital trips throughout the summer, so that was a huge bonus. We had a lovely holiday in N Devon and it was lovely to see Jacob in the sea and swimming pool, something he couldn’t do last year. He is a bit of a surfer dude and enjoyed body boarding!

He has gone back to school into Year 1 and has that ‘I’m not the littlest anymore’ swagger! He’s really enjoying it. Louise is back at playgroup and is enjoying that too. It was lovely to see them playing over the summer, they get on so well.

Jacob’s dad ran the Bristol half marathon on Sunday and we are all so proud of him. He ran in aid of CLIC (

Thank you for all the gifts and postcards, each one is still so very much appreciated.

Oh, and one last little bit of news. All being well, Jacob and Louise will have a new brother or sister next March. They are very excited… for the moment!!

Update 1st August 2007

Jacob continues to do well. He has now finished his reception year at school which we are so proud of. He had his ‘report’ and has done really well. He only missed about 10 days through illness, so that far exceeded our expectations! He is now on summer holidays along with his sister Louise, so we have a lot of fun (!?) to look forward to! They have been sent some fantastic activity books and activities as posty though, so at least we have things to fill the time! Thank you to Karen, the football wordsearch was a huge hit; it kept Jacob busy for ages! He has also loved looking at the different stamps from around the world! Jacob has received some fantastic goodies this month, as has Louise, so thank you to everyone who is kind enough to think of us. My PC has been a bit poorly, and I have lost Ms Marcene’s email address, please could you mail me Ms Marcene?

Many thanks to everyone for your continued support.

Update 4th June 2007

Jacob spent his half term in hospital! He spiked a temperature on the Monday and we were allowed out on Friday. We think it was viral, but they kept spiking, so they wanted to make sure. He was great at having the canula put in and it lasted all week which was great. I’ve kept him off school today, and will let him go back once I know his bloods have bounced back.

He is really enjoying football, but sadly, he missed football camp in half term. I’m sure there’ll be other chances though. His little sister Louise was sad he was not around, I think it’s getting harder on her the older she gets.

Other than that blip, Jacob is just fine. A real typical 5 year old boy!!

Update 3rd May 2007

April saw 48 hours on the ward with a high temperature. Our first stay in 6 months so can’t be bad! It came a week before the 2 year anniversary of Jacob’s diagnosis, and it almost seemed apt. Just a little poke – a gentle reminder that we’re still on this journey.

Jacob was fine within a couple of hours of arriving at the hospital, of course, so it was 48 hours of keeping him amused! His bloods dipped and he was off oral chemo for a couple of weeks, but he’s been on 100% since January, so not too bad. He’s back on it now.

He was fantastic with his last vincristine shot; he was so good with the canula. And then yesterday he had his LP and he chose the canula over the mask (as he doesn’t like the taste of the mask!) and again, he was as good as gold. We’re so proud of him.

So a funny month, but Jacob is fit & well. He starts football club later today and is *so* excited!

Update 1st April 2007

Jacob is still doing well. His bloods have been consistently high since 12th Jan now, so I am expecting them to up his dose of 6MP. He was presented with an award in his school service last week for hard work; I was very proud and it was lovely to watch. We had a bit of an odd week as Jacob’s dad’s car was stolen from our driveway on Tuesday and a window was smashed on my car. Annoying as it is, we both know it’s not the end of the world, serious illness gives a very clear perception on life!

But, to make up for that, exciting news! We got a puppy yesterday and she is called Maggie! We’ve been visiting her since she was 5 days old, and she is now 8 weeks. She’s a black working cocker spaniel and the kids are besotted, as are we – she’s very cute!!

Thank you to Karen for the cat cards, both kids think they are hilarious and they love hearing about your exploits, I think you are fantastic for doing it so regularly. And Julie B too, your cards are always appreciated!

Update 8th February 2007

Jacob is doing great. He is looking great and feeling great. He has been so grown up with all his GA, thumb pricks and butterfly canulas. He does them all with no fuss at all now and I don’t even have to go into school when the CLIC nurse comes now, he does it all on his own. Not bad for a 5 year old! We are all immensely proud of him.

Thank you for all the cards, notes and gifts that people send to both Jacob & Louise, they are all met with a big smile.

Update 1st December 2006

Jacob has missed just over a week of school due to low bloods, but he has gone back this week. He spent a night in hospital too, with a temperature spike, but we were lucky to escape in less than 24hrs! He had his vincristine shot yesterday and the steroids have already kicked in! It’s his Birthday tomorrow, and I doubt anyone else will get a look in with his cake!!! Thank you for all the gifts that have arrived ready for the big day, they are all hidden under my bed!!

Merry Christmas everyone!

Update 4th November 2006

Jacob continues to do well without wiggly. His bloods have been good for 2 straight months now, which of course means he has managed 100% maintenance for all that time, which is good. He is being very brave for the thumb pricks and canulas he has to endure.

Thank you for all the Halloween goodies and the CDs for Louise. The parcel from America was fab, the Scooby stickers and stapers went down a treat.

Update 5th October 2006

Jacob is doing really well. I think the removal of his wiggly was a blessing in disguise. He is coping well with thumb pricks and canulas and his bloods have been sky high and keeping that way. He is like a new little boy, so much more confident and best of all, we can all go swimming which we all love.

Thank you as ever for all the post. Louise has been really excited to receive mail too; she loves to rip open envelopes!

Update 31st August 2006

Jacob came out of hospital on Thursday – hurray! Wiggly had to go in the end, but he’ll get a new one soon.

Update 13th July 2006

Jacob broke his elbow yesterday; he stood on top of and fell off of one of those tiny toddler slides. He was not a happy chappy during the exam, x-ray or plastering, but is fine now and doesn’t seem to be in pain and is adapting to being left handed already.

So, we got to see a whole new department at the hospital, it made a bit of a change!

Update 6th July 2006

Jacob ended up back in hospital ‘again’ last week for 2 nights with another high temperature, so lots more antibiotics were needed. It had to be one of the hardest stays for me; there were lots of newly diagnosed children which is very distressing. Then I got ill too and ran a fever which knocked me for six.

His bloods miraculously came up though. He has re-started on the chemo and he has been back at playgroup this week.

Update 18th June 2006

Not quite the holiday we planned.

We got Jacob out of Bristol children’s hospital on Saturday and set off on holiday on Monday at about 11am. By 2pm he was settled into a ward in Barnstaple hospital as he spiked a temperature and was unwell on the way down.

So, he ended up in there until late Wednesday evening. We had to take him in Thursday and Friday for IV antibiotics too, each one taking about 2 hours.

We were meant to come home Friday, but booked into a Travel Inn that night to extend it a bit.

Update 9th June 2006

Jacob’s been on the ward since yesterday morning after he spiked a high temperature. He hadn’t been quite right for a few days and as we are going on holiday next week to Devon, we wanted to get it sorted.

Update 8th May 2006

Jacob had a lumbar puncture last week and was a really good boy; he really showed how much he had grown up since his last one, 12 weeks ago. We are so very proud of him. His bloods had dropped a bit last week, but the CLIC nurse has been today, so we are hoping they will have risen a bit.

I am doing the Race for Life on Sunday 14th May and poor Jacob is a bit disillusioned I think, as he keeps asking me if I’ll win the race!!

Thank you again for all the post that Jacob receives. All the crafty Easter activities went down a storm with him & his sister, Louise.

Update 12th April 2006

Went to check on Jacob on Friday night before I went to bed and realised he was red hot. Cue 48hrs on the ward! We think it was just a cold/virus as no tests came back with anything nasty.

Update 4th April 2006

Jacob is doing really well, his bloods seem nice & stable and he is full of energy. We met with the consultant a couple of weeks back and it was all very positive and it seems Jacob is doing as well as they can ever hope for. Nothing is ever certain, but we hang onto those positives.

Thank you to everyone for your continued support for Jacob. He still gets so excited with every bit of post he receives! We are very grateful to you all.

Update 7th March 2006

Jacob spent 48hrs on the ward, Friday – Sunday. He spiked a couple of high temps, but all seems to be well and his cultures came back clear, so just got to keep an eye on him. His bloods have dropped though, so no playgroup. CLIC nurse coming today, hope they’ve gone up.

Update 28th February 2006

We saw a consultant last week to get an update on Jacob’s progress. To cut a long story short, he is dong as well as can be expected and they are very pleased with how it’s all going/gone. If we can get him to 5yrs post treatment (7yrs time) without it coming back, his long term prognosis is very good.

Jacob is very well in himself; his hair is growing back and is so soft – adorable. He is back at playgroup and loves it. He has his bloods done once a week and touch wood, we shouldn’t have to go back to hospital until 23/03, we will have had 4wks off.

Update 16th January 2006

After 14 Lumbar punctures, 4 shots of aspariginaise, 6 infusions on doxorubicin, 2 infusions of cyclophosphamide, 16 shots of cytarabine, 14 shots of vincristine, countless tablets, endless medicines, 2 different central lines and 34 nights in hosptial – Jacob has finished his intensive treatment today. He is in still in remission and everything is going to plan.

We still have a long way to go, we are currently on week 37 and treatment ends at the end of week 164. There are many more medicines to take, and lots more drugs to be administered, plus an LP every 3 months, but we should be at the hospital a whole lot less.

It feels great, it really does. We are so proud of him and how he has coped, he’s a true hero.

Update 31st December 2005

Jacob had a tough couple of weeks leading up to Christmas, with 2 separate stays in hospital. Touch wood, normal life has now resumed though.

Thank you for all the wonderful cards. The ones from the reindeer made us chuckle every time! Thank you to everyone who sent Jacob a gift aswell. Each one was much appreciated and caused a lot of excitement. I will be sending individual thank yous as soon as I am able, but please know how grateful we are. We’re continued to be amazed with people’s kindness.

Update 16th December 2005

Have a bit of time to update as we are stuck in hospital again. Jacob spiked a temperature on Sunday and we have been here ever since. He was sick Monday night and his temp spiked again, but has been stable since then. His bloods are really low, but he still had his chemo earlier (2wks into Delayed Intensification II). None of the cultures have grown anything, so we think it’s probably a viral thing, but with his history of line infections, we want to cover all bases. Really hoping to get out this weekend.

Update 28th November 2005

Jacob has a new wiggly that all went well and he is very accepting of it. He starts delayed intensification on 30/11, so we will be jumping back on the treatment rollercoaster. Jacob is very well though and has been attending playgroup as well as keeping us on our toes!

Thanks to everyone who sends a smile, every one is appreciated, it really is.

Update 6th November 2005

Well, after being told Jacob could come home Monday, not Friday, it all changed again and he did end up in there until Friday.

They decided that he needed to stay on the IV antibiotics as they did not think the oral ones would be sufficient. We were allowed to bring him home for most of the day, and the last 2 days we were allowed out from breakfast time to bedtime, with the CLIC nurse coming out to give him meds. Still a hard slog though, and I’m glad it’s over. We actually ended up in there the same amount of time as when he was diagnosed.

Only person not pleased however, is Jacob. He’s totally institutionalised and I had to drag him out of there every day and then he spent all day asking to go back. When we were discharged, he said “I know, I can move my bed in here”.

He is so well, you wouldn’t know there was anything wrong. Bloods have fallen though, so all oral chemo is suspended as we are going away tomorrow for 3 nights and they didn’t want to risk him getting ill when we are away.

Update 30th October 2005

Jacob has been in hospital since Tuesday lunch time. His nurse- Ali came to take bloods that morning, and within a couple of hours he was shaking uncontrollably, vomitting and complaining of aches all over. Classic signs on a line infection. As soon as she flushed the line it went straight to his blood stream, which is why it was so sudden. Upshot is that they wanted the line removed as they think this bug is hanging around. They were going to remove wiggly early next week, but the cultures grew a very nasty bug, so he went on the emergeny theatre list today and wiggly has now gone. He’ll have 2 more days of antibiotics on a slow driver, and then he should be able to go on oral antibiotics and come home Monday. He was looking at being there until next Friday, so that is a welcome relief. It’s been unbelievably hard as Matt his Dad had an operation on his knee just a week ago which had left him unable to walk. So, I have been doing all the nights at the hospital and the bulk of the day shifts. I had to arrange people to look after Matt as well as Louise. He has insisted on staying with Jacob tonight though, so I am at home. I hope they are OK (nurses will be looking after Matt more than Jacob!)

Update 13th October 2005

Jacob is on Maintenance for 8 weeks with only 2 scheduled hopsital visits! His blood counts are currently the best they have been. Jacobs dad is having surgery on his leg later in the month.

Update 26th September 2005

Thank you again for everything that you have sent for Jacob, every single one makes him and us smile and we are very appreciative.

Jacob finally finished his intensive chemo last week. We are just waiting for his blood counts to rise and then he can go back to playgroup. He is really well and full of energy.

Update 15th September 2005

Jacob had a lot done yesterday  – chemo, antibiotics and a lumbar puncture. He was sick all evening, and I mean *really* sick, was just bringing up bile. We had to take him to A&E where they gave him some meds which worked instantly. We got in at 11.30pm last night.

Took him back again this morning for more chemo and antibiotics. Very very tired. Jacob is fine just like it never happened!?

Update 12th September 2005

Well, after 5 nights in hospital we’re finally home. The infection should clear up with the antibiotics, and he is certainly very well and back to his normal self. We were discharged at 1pm, but Matt has just taken him back as he needs his next antibiotic at 6pm, they do it on a slow driver. I then have to take him in every day until Thursday for the rest of the course.

His counts are good enough to begin the next bit of chemo too. So, on Tuesday he will have a Lumbar puncture and the spinal chemo, and another chemo which will be infused over 4 hrs. Then we go back Weds for a different one again, but this is just a push through wiggly. He then has this one for a further 3 days. Then, next week, it follows that pattern again, but without the 4hr one.

Update 9th September 2005

Just wanted to let you know that Jacob is in hospital with a line infection, he’s been in since Tuesday night and we will find out today when he will be able to get out. He’s a lot happier in himself today after being quite miserable for a few days, so he’s on the mend.

Update 22nd August 2005

Thank you so much to everyone who has sent Jacob (& Louise) something through postpals. Jacob gets so excited when the postlady comes and Matt & I are both overwhelmed at how kind people are, because they really do make our little boy smile. I hope to be able to reply to everyone one day.

Jacob is doing well on his intensive treatment block so far. He has not had any adverse reactions to the new drugs so far and is well in himself. The steroids have kicked in and he is eating more than usual and has got a ‘moon face’ again. He suffers from achy legs from time to time and often complains of a tummy ache, but is still as cheeky as ever.

Update August 9th 2005

Jacob is starting an intensive chemo block.

Brief rundown on the next 7 weeks:

  • 3 x Lumbar punctures and spinal chemo (done under general). Had plenty of these before and no adverse reactions as yet.
  • 1 x asparaginase injection in his leg. Horrid and hurts like hell
  • 3 x doxorubicin. IV chemo given over a 1 hr period. Never had this before.
  • 3 x Vincristine. Had loads of this, makes his legs ache.
  • 2 x 7 day courses of steroids. Hunger and weight gain kicks in around days 4/5, mood wings from day 1
  • 1 x Cyclophosphamide. IV chemo given over 4hrs. Never had this, likely to make his hair fall out.
  • 8 x Cytrabine. IV push given in 2 four day bouts. Never had this.
  • 2 week course of Thioguanine. Given orally. Never had this.

It all kicks of with a general tomorrow for a lumbar puncture and a shot into his spine. Am hoping that he stays quite well, but don’t know how he will react to it all really. His counts will drop like a stone as all these drugs are immune suppressents, so we’ll be pretty housebound again, much like we were for the first couple of months.

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Jack Peter B

14 June 2012

Story written 2008

Jack was diagnosed with Acute Lymphoblastic Leukemia (ALL) on 6th July 2007. The diagnosis was a complete shock. Jack had been off colour for a few days and had a few bruises on his legs which we thought were caused by him play fighting with his big brother Marcus who is 9. Luckily our GP sent Jack for a blood test and within 10 hours and a very exciting trip in an ambulance with sirens blasting we were admitted to Addenbrookes hospital in Cambridge where Jack began chemotherapy.

Jack was initially in hospital for 3 weeks and reached remission during this time, but he now had to face 3 years of treatment. Unfortunately in November 2007 Jack became very ill when an infection in his hickman line spread to his heart and he had to go into intensive care. The hickman line was removed and after 6 weeks of IV antibiotics we received the fantastic news (just before Christmas) that the infection in his heart had gone.

Jack is a fantastic, beautiful, happy little boy who fills our life with joy and who we could not love any more if we tried.

Update 18th August 2010

I think it is time for Jack to move on. I think that with only a week left of treatment the time is right. I can not express deeply enough what all the cards, letters, emails and gifts have meant to Jack (and his brother Marcus). We have two boxes full of cards and letters that I will keep forever as they are a big part of Jack’s Journey.

Huge thanks to everyone involved with Post Pals – never doubt for one minute that you make a huge difference to a poorly child and their families – we have had some really dark days during the last three years but the kind words and support we have received have helped tremendously.

Please never ever stop sending post to Pals – we shall now be sending post rather than receive it and will know how exciting it is when a brown parcel arrives and you have no idea what is in it!

Once again – thank you all so much. Erika, Rob, Marcus & Jack xxxx

Update 3rd August 2010

As always, I must apologise for not updating Jack’s page recently. Time has really flown by.

Jack continues to do well – he has only had two short stays in hospital in the last three months. After his last Lumber Puncture at the end of May, he had a leak of spinal fluid which caused him to have a severe headache and vomiting – he has had over 20 Lumber Punctures in the last three years and this is the first time this has happened. He also had a nasty kidney infection and was passing blood in July – so he had to go into hospital for five days of Intravenous antibiotics.

Jack is continuing with physio for his hips as he is suffering from the long terms effects of chemo and steroids – he is now having weekly sessions with the Physio in the pool – which he enjoys.

We are now counting down the days to the end of treatment – Jack has his last Vinchristine at Addenbrookes on Thursday 5th August and his last Lumber Puncture on Thursday 26th August – it does not seem possible we are nearing the end of this journey. Looking to the future, we are hoping that Jack will start to return to school on a more regular basis as his immune system picks up.

As always, thanks to everyone who has taken the time to write to Jack and send him gifts, letters and cards.

Update 23rd April 2010

I’m so sorry I have not sent an update for a couple of months. Jack is doing well and even managed to go into school a couple of times – he is now in his last five months of treatment – we have been given the date of 30th August 2010 for his last Lumber Puncture and Chemotherapy. Health wise he has been pretty good, only one stay in hospital due to another outbreak of shingles – which is very painful. He has also been referred for Physio as he has been experiencing a lot of pain and muscle weakness in his legs – a side effect of almost 3 years of daily chemotherapy and long term steroid usage. Now the weather is so much better we are encouraging him to walk more and ride his bike to strengthen his muscles. The walking is important as we have a new addition to our household – a Chocolate Labrador Puppy called Lola – we got her at 8 weeks and she is now 18 weeks and is a total nutcase!!

It has been so sad to read about the loss of so many Pals in the last few weeks and despite everything we have been through with Jack it makes us realise how lucky we are that the survival rate for children like Jack diagnosed with Acute Lymphoblastic Leukaemia is now 95%. We try to do as much Fund Raising as we can for Leukaemia & Lymphoma Research and joined Sir Ian ‘Beefy’ Botham for his charity walk last week in Milton Keynes & Hyde Park, London. We had a wonderful time – meeting up with old friends and making new ones, Marcus was chuffed as he met Freddie Flintoff and had a cricket bat signed and had his photo taken – Sir Ian was great as usual – even though Jack was on steroids and very very grumpy!!

We have received loads of emails in the last few days which I will try and reply to and as always would like to say a huge THANKYOU to everyone who supports Post Pals and takes the time to write and send gifts to the children and their brothers and sisters and for the kind words of support that they send us parents.

Update 14th January 2010

Happy New Year to everyone – hope you all had a wonderful Christmas. THANKYOU THANKYOU THANKYOU to everyone who sent Jack & Marcus post in December – we seemed to receive sack loads! I am trying to write to everyone who I have an address for – please bear with me – I was going to list you all here but I will write to you individually.

Jack had a fantastic birthday on 22nd December – we were picked up in a stretch Hummer Limo and taken to his favourite restaurant – Pizza Express where he and 8 friends made their own pizzas then we went to Milton Keynes to see Cinderella that Jack thought was hilarious – he was shouting and laughing out loud – it was lovely to see him. Bobby Davro who played Buttons even said Happy Birthday to him.

Health wise things have been pretty good – Jack has had a growth spurt and has lost a bit of weight and looks very well – his hair has grown back again too. He is still suffering from general aches and pains and tiredness and has very dry itchy skin on his face – but apart from a cold he has been well and hospital visits have only been routine. Both boys have loved the snow!

We have received some lovely letters from a school in Seoul – Korea – it seems the whole class are planning to come and visit Jack!!

Once again, thank you for all your kindness and support.

Update 8th December 2009

It is impossible to believe that another year is almost over – Jack will be 7 on 22nd December and we pass another milestone as he finishes treatment (if everything goes according to plan) in October 2010.

Jack has been up and down health wise – he had his Swine Flu Jabs in November (children under 10 have to have two) and they knocked him for six – his blood counts have not been very good and he is neutropenic (immune system non existent) which means he has been unable to play out with his friends or go to school, which is a real shame. We had a scary time last week when Jack went to bed with a slight cold and awoke at 1am with a severe case of croup and he was struggling to breathe so we had to call an ambulance – the paramedics were fantastic and kept Jack very calm. He was put on steroids and oxygen which sorted out the problem – although now we have an oxygen tank, saturation monitor and steroids at home in case it happens again.

The post is coming thick and fast – Elf boxes have arrived and lots of other presents that I have put away to be opened at a later date! We have had cards from Canada and the USA and a wonderful seasonal newsletter from Percy the Poodle. I will try and reply to everyone who has supplied an address.

To everyone involved with POST PALS, have a wonderful Christmas and a happy and hopefully healthy New Year.

Update 2nd November 2009

Firstly – huge apologies for not updating Jack’s page since the end of July. Jack continues to respond well to his treatment. He had one spell in hospital at the end of September when he developed a nasty Chest Infection – a week of IV antibiotics cleared it up, but it did mean he had to miss a trip to London to do some Cake Baking with Nigella Lawson.

Jack is now two thirds of the way through his treatment – fingers crossed this time next year he will have completed his chemotherapy and things will start to get back to some sort of normality.

Jack’s tummy problems are now much better and he is not suffering from daily stomach cramps any more, although he still reacts really badly to his monthly steroids.

Thanks to everyone who writes to Jack and Marcus each month – it is really appreciated.

Update 30th July 2009

Jack managed to get another really nasty dose of shingles in the last week of June which did not respond to anti viral oral medication, so he had to go into Addenbrookes Hospital for 5 days IV treatment. He had to stay in isolation which was not much fun in the heatwave!

A week after he was discharged, we went to Cornwall for two weeks and I got what I wished for in my last update – rain, rain and more rain – but we did have quite a lot of sunshine in the middle. We stayed at the same place that we were due to go to in July 2007, but Jack was diagnosed 4 days before we were due to go. It was lovely to finally get there, albeit 2 years late! Jack and Marcus had a fantastic time, body boarding in the surf, go karting, cycling and Quad Biking. Marcus was very lucky and went to see Razorlight at the Eden Project – I had to wait until this year when I was 40 to go to my first concert when I saw Take That last month and he is only 10! 

We had some lovely post waiting for us when we returned – thank you as always to Jane & Percy the Poodle for the postcards, letters and gifts and to Kym’s cards for the wonderful cards and gift vouchers.

Jack saw his consultant at Addenbrookes today and he should get a Swine Flu jab as soon as they are available – Swine Flu is a real concern at the moment and we are keeping Jack away from crowds and being extra careful with hand washing etc. The Consultant gave Jack a really good check over – he has been having pain in the back of his neck from where he had shingles so has some pain relief for that and he has been having quite bad tummy pains and is needing to go to the loo 5 – 6 times a day so he has some new medicine to try to help that too.

Update 20th May 2009

Sorry I have not updated Jack’s page for a while. Things have been a bit hectic here (as always – so no real excuse!).

Jack has managed to have Chicken Pox and Slapped cheek and another very itchy and very angry looking rash which the doctors have decided is an allergic reaction to UV light caused by his chemotheraphy. This means he has to stay out of the sun, always wear Factor 50+ sun cream, long sleeves and a hat – so we are hoping for a rainy summer (sorry everyone else!).

Other than that Jack is doing well – he is still off school but is doing well with his teacher who comes to see him at home for an hour everyday.

Thank you to everyone who continues to send post to both Marcus and Jack.

Update 3rd March 2009

Hi all – hope you are all keeping well. Thank you to everyone who sent Jack post this month. I know I think he is gorgeous but so must lots of other people judging by the number of Valentine cards he received!! He has received a wonderful cushion and books and stickers – thank you all so much.

Jack is off school (again!) as they have another outbreak of Chicken Pox and we can not risk him catching it, so he is back to being home tutored – hopefully he will be able to go back to school in another week if there are no new cases. Heath wise jack is doing well – the monthly steroids still knock him for six and make him really grumpy but other than that he is looking great and keeping well.

Thanks for stopping by and catching up.

Update 6th February 2009

Jack finally managed to go into school for one day this week – hooray! They shut the school because of all the snow – Jack was not bothered in the slightest and has been out playing in the snow.

Thank you to everyone who thought of Jack and Marcus in January – they have had post arriving almost everyday from all over the world – they loved the fortune cookies and chopsticks they received for Chinese New Year.

Jack was fine having his ‘special sleep’ and as usual took it all in his stride. His chemotherapy dose has had to be increased to 125% because believe it or not his blood counts are too good – I know it sounds crazy and you would have thought that the doctors would be pleased with this, but they want to keep his immune system suppressed and his is being too strong, so they have to try and reduce his counts by increasing his chemo. It really is a case of increasing and decreasing until we get the right balance.

Update 5th January 2009

What can I say… thank you does not seem enough to all of you who sent Jack birthday cards and presents in December – you are all amazing. And then there was Christmas too! Jack and Marcus received so many cards and presents – they had a sack full of Post Pals presents each to open on Christmas day. Thank you to each and every one of you – especially Jane Beswick & Sarah Marshall and everyone else for your gifts and wonderful cards.

Jack has been great – he is now the proud owner of a new bike and an electric guitar and a drum kit! Addenbrookes delayed the Chemo he was due on Christmas day until 30th December so he was not on steroids over Christmas. He has to go into hospital on Thursday 8th January for a ‘special sleep’ and a lumber puncture but I am sure he will take it all in his stride.

He is still off school – he has a home tutor for 5 hours a week so he keeps up, but there are too many bugs doing the rounds at school at the moment to risk him going in.

Thank you for stopping by and catching up and for all your kindness and support.

Have a safe and happy 2009.

Update 4th December 2008

Well another year nearly over – Christmas is coming up too quickly and we have got Jack’s birthday on 22nd December too!

Jack has had a good month, he has been reasonably well in himself – his immune system dropped to zero following his last chemo which left him very tired. He has not been able to attend school because they have a sickness bug doing the rounds and we can not risk Jack catching it as he will not be able to fight it off. That is one of the main worries with a child undergoing chemotherapy. Unlike when a ‘healthy’ child picks something up that they will recover from in a couple of days and a dose of calpol, children having chemotherapy can become very ill very quickly.

Anyway, we were very lucky to be invited to a Christmas Party at Harrods in mid December – there were about 200 children there who were poorly or disadvantaged and Mr Al Fared certainly laid on a fantastic party for them – Jack had a fabulous time.

We also made an appearance on The Richard & Judy Show’ – I know we are getting so famous – in a tribute to Sir Ian Botham and the money he has raised for Leukaemia Research.

Jack has been enjoying receiving his postcards from the Reindeer – Cupid and Dancer so far – they have good hand writing considering they have to write with their hooves! Thanks to all Jack and Marcus’s Post Pals – have a wonderful Christmas and a Happy & Healthy New Year.

Update 1st November 2008

Another busy month for Jack – thankfully his sore mouth has all cleared up and he hopes to be back at school next week – if there are no new cases of Chicken Pox.

We all joined Ian Botham on 13th October for his ‘Great British Walk Against Childhood Leukaemia’ and Jack appeared on the local news on BBC & Anglia. He had a lovely day and Ian Botham’s mother-in-law made Jack a Bacon Roll in the Winnebago – he really does get spoilt!

Thank you for all the Halloween cards and gifts – we have had cards from as far away as Japan, USA and Australia. We had a small Halloween party last night – Jack dressed as a Werewolf – he was very much in character as he is on steroids again this week and so his growls and howls were actually for real.

Thanks for stopping by and catching up.

Update 8th October 2008

I’d like to start by apologising for not replying to everyone who has sent Jack and Marcus post recently. Especially to Jane, who sends them something every week without fail. Thank you Jane for Marcus’ birthday present and for sponsoring the boys for their fun run for Leukaemia Research.

Unfortunately Jack has not been very well – he had a very very nasty case of Herpes Simplex (Cold sores) which were all over his lips, in his mouth and down his throat and even on his fingers. He has been really down in the dumps as you can imagine – especially as he has not been able to eat much – which is his favourite pass time! They have cleared up now after 2 weeks of antibiotics and he is back on his chemotherapy. He is off school though as they have got an outbreak of Chicken Pox in his class so he has to stay away!

We are going to walk with Sir Ian Botham on Monday in Bury St Edmunds for ‘Beefy’s Walk against Childhood Leukaemia’ so if you live in the East Anglia area tune in to the local news on Monday night and you might see Jack!

Update 30th August 2008

Jack continues to do well. Although we had a mad dash to hospital at the beginning of August when Jack had an attack of croup and had trouble breathing – he had to be put on oxygen and a nebuliser and stay over night to have a course of steroids to keep his airways open. He has had three attacks so far this year which always happen when he has a cold. Although 24 hours after the attack he was running around as if nothing had happened!

Jack is looking forward to going back to school on 3rd September although he is back in Adddenbrookes on the 4th for chemo and more steroids, which means no school for the next week as he will be too grumpy.

On 21st September, Jack and Marcus are taking part in the 2008 2k Junior BananaRun which raises money for Leukaemia Research. We set up a fund raising site in September 2007 and so far have raised nearly £10,000 for Leukaemia Research. We are hoping to raise £50K for Leukaemia Research over the next 5 years, as without the tremendous work they do Jack and so many other children would not survive this dreadful illness.

Thank you to Jane who sends both Jack and Marcus post every week and to everyone else who continues to think about Jack and Marcus – you are all wonderful! I have hidden away the cards and presents that have been sent to Marcus for his birthday until the actual day on 2nd September.

Update 31st July 2008

After having quite a quiet time of things hospital wise in the last few months, we have been making up for it in the last three weeks! Jack has been on the dreaded steroids – they seem to make him grumpier every time he has them. He is usually such a happy little boy but these drugs give him a complete personality change and he growls at people! He is also hungry for the whole time he is on them. He never seems to crave healthy food though, just doughnuts and McDonalds, and last week he put on 2lbs in 7 days!! He had to go into Addenbrookes last Thursday for a ‘special sleep’ and had a lumber puncture and chemo in his spine. He only has this every 3 months now instead of weekly but it does not get any easier for us as parents.

Thank you to everyone who sends Jack and Marcus post – they get very excited to see who has written to them!

Update 11th July 2008

Wow – what a busy month and what a lot of post! A massive thank you to everyone who has written to Jack and Marcus and sent them presents.

Jack has had a really good month. Although he was not well enough to go on his school trip to the zoo in May, he was able to take part in sports day, which was fantastic.

Jack also had a wish granted by The Starlight Foundation and on 28th June we went to Disneyland Paris for 4 days – Jack was so excited! We did not let on to him what was happening until we arrived at the Eurostar Station and his face was a picture! We got back late on Monday 30th June and on Wed 2nd July Starlight granted the second part of his wish which was to go in a Ferrari – he was picked up from School in a Red Ferrari and given loads of Ferrari goodies, including a remote control car, a Ferrari racing suit and lots of other stuff as well – he was a very excited little boy!

Then on Friday 4th July we went to the Isle of Wight for a week’s holiday (we only got back today) but unfortunately the weather was pretty awful. The holiday marked an enormous mile stone as it was 1 year ago on 6th July that Jack was diagnosed.

Update 6th June 2008

Jack has had another busy month – lots of his friends at school have been having birthdays and he has been to quite a few parties. Unfortunately he is not very well today and has had to miss his school trip to Whipsnade Zoo as he had an attack of croup.

Jack is very excited that he now has a dog as a Post Pal! Derek the dog wrote him a fabulous letter (thank you Deborah – we will write back very soon) and invited Jack to join his ‘making a mess club’ – which Jack is very keen to go to – it’s just a shame Derek lives in Wales.

Hospital visit wise things have been quite quiet – only one visit to Addenbrookes in May and weekly bloods at our local hospital. On 31st May, myself and 14 other friends/family members took part in the Race for Life wearing our ‘Team Jack’ t-shirts – we all managed to get round the course – just!

Jack received a quilt from Claire at Quilts4Leukaemia  – it is stunning and has blocks on it made from people all over the world. Claire contacted us through Post Pals – there is a photo of Jack with his quilt on their website

Thank you for the Chemo Duck and massive thanks to every one who has taken the time to write to Jack – please include your address so we can write back.

Update 14th May 2008

Jack got the all clear from the Cardiac Consultant at Addenbrookes last month which was a huge relief.

Jack managed about 5 days at school in April – he had to have one lot of nasty chemo and steroids which made him feel very tired and grumpy.

We were invited up to London on 8th May by Leukaemia Research to help launch Sir Ian Botham’s walk for Leukaemia – we met Ian Botham and had a wonderful day – Jack was on Sky news and in the Daily Express and Daily Mirror – he is becoming quite a little celebrity!

Thanks to all our postpals – especially Jules who writes every week.

Update 1st April 2008

Jack has had a really busy month. We only had one visit to Addenbrookes this month for Jack’s Vincristine. Due to Jack not having a Hickman line, he has to have a canula put in for this chemo which can be a nightmare, as his veins have a habit of collapsing and it can sometimes take 3 or 4 attempts to find a good vein. Luckily, Jack’s consultant managed to find a good vein first time. Jack is always very brave – he knows that as long as he sits still he can scream as loudly as he likes which he makes sure he does!

Jack’s hair has grown back well – I think I may have to take him for a haircut soon! It’s amazing as in January he did not have a hair on his head.

We managed to get away for a few days over the Easter weekend to Norfolk and we woke up on Easter Monday to about 4 inches of snow which the boys loved.

Please keep your fingers crossed for Jack on 9th April as we have to see the Paediatric Cardiologist at Addenbrookes for a check up on Jack’s heart following his infection back in November and if everything is ok he will sign us off, which will be one less thing to worry about.

Thank you for all the lovely Easter cards. Thank you also to Ellie Boyde for the fab towel and flannels, Linda B for the globe, Kyle & Erin for the Easter Chick and everyone else who sent gifts this month.

Update 28th February 2008

Jack has been well enough to go to school for four half days this month. He has been on steroids and has been a bit grumpy and very hungry!

We held a birthday party for Jack last week as he was too poorly to have a party with his friends back in December. He had a fantastic time!

Thank you to all our new Post Pals!

Continue reading...

Jack M

12 June 2012

Story written 2005

Jack was diagnosed with A.L.L on 29th December 2003. He was normally a very hyperactive, happy, excitable little boy but had recently become quiet, tired and not happy. We put alot of it down to him just starting in reception at school as he was 4 years old. Throughout Christmas he felt unwell and we took him to the Dr’s on 29th December requesting blood tests. He had these done and within the hour we were told to get him to the local hospital as soon as possible. We were then told what they thought he had and that he had to be transferred to London. Our daughter Daisy was 9 months old at this time, our world was turned upside down. Jacks’ grand parents were amazing in every way you can think, we arrived at the Royal London he had the operations to confirm what he had and we were then told the following day his diagnosis. To be honest that is when everything crashed down around us and shock set in, we were taken for a chat about everything and on asking outcomes etc we asked how long Jack had? We were told maximum 8 weeks, he may not have seen his 5th Birthday, they were surprised Jack was not in a coma.

We kept a diary of every day from then onwards the separation of us all was immense making Jack take the medication holding him down, is something we never want to do again or wish on anyone. He has had many reactions to different drugs, the sores in his mouth, hips aching, joints seizing up, ear ache galore, but the worst side effect are due to the steroids, he gets very bad nightmares and obviously his weight and moods swings are horrendous, however our little man is still here!

He is our little hero, a typical 6 year old in many respects at the moment. He just wishes he could run properly and catch better, not have to keep having the operations and the needles in his port, but he understands why. We have never lied to Jack, there is no point and it is unfair, he knows he has cancer, he knows all he needs to know in the language he understands.

He is an amazing little boy, a fantastic big brother and the best son and grandson you could wish for. We dream of the day he can be “cancer free” and our little hero will make it, half way through now, keep going our little dude.

Story update March 2007

Jack has finished 3 and half years of chemotherapy, and is now “off treatment”.

Update 2nd January 2009

Jack is doing ok at the moment, although he has his pains in his legs which we are waiting to get a second opinion on. He has a rash around his mouth which is not nice and we need to get sorted, but other than that Jack is doing ok.

It is a weird time of year for us as the 29th December 2003 was the worst day, but Jack is still here.

Thank you again Post Pals as you have always supported Jack and us. To the adults and children that look on the website who have no direct relationship with the families and send post, you are amazing!

We have many thank you’s which I will list and post soon, but we are overwhelmed by people who have sent our children cards and presents. We have taken photos so we will send you some of them. THANK YOU is not a big enough word.

Update 3rd November 2008

Jack is doing ok, we have our MRI date now for the 2nd December, and we will hopefully find out a week later if Jack has avascular necrosis. The Doctors have thought that he will/may need help with his feet as there is a possibility that he also has problems with the soles of his feet. We hope we will know more before Christmas.

Update 30th August 2008

The Professor is pretty happy with Jack. Luckily he could no longer feel a lump behind Jack’s nipple (big sigh all around) and he said this was possibly due to the port. When they place the port things obviously need to be cut etc. and to cut a long discussion short it could have been sort of fibres of skin that group together, a bit like ‘breast mice’.

Professor has finally got some joy back from the Orthopaedics. They emailed him 2 weeks ago confirming they were going to see Jack and that they had written to us, but surprise surprise, we have not heard anything, so he is ringing them today to speak to the person who emailed to find out where our letter is! He asked Jack to walk up and down the corridor, to see if he could still notice anything, and even with Jack’s jeans on he could see how ‘knock kneed’ Jack is and also how Jack holds his knees a lot as they hurt most of the time.

Jack’s skin seems to have got worse. The bigger patch has gone, but he has lots down his legs. The Professor says they are “pityriasis” and he wants to see if they go on their own without the capsule to help them go. Bless him, they are covering his legs now, they tend to mostly affect immunosuppressed people but anyone can get it.

He also brought our attention to Jack’s veins in his neck as one side is rock hard. He wanted to point it out so that we did not panic when we felt it. It is where the tube went through that vein to access the port and his heart and it feels really strange!

So we are still waiting for orthopaedics, but, we are one step closer now!

Update 30th July 2008

We took Jack to the Doctors yesterday (28th) and he has an ear infection, but a good dose of antibiotics should help him. It was calm this morning, then this afternoon he was screaming in pain bless him, so he is currently dosed up on calpol and ibuprofen.

Jack went surfing the other day when Daddy finished work early and he loved it. Daisy and I made sand castles instead.

We have clinic on the 20th with Jackson and we will ask again about the orthopaedic appointment. They are doing all they can to chase it though. Jack’s skin is not getting much better, so we will have to give the hospital a ring about that to get it checked out.

We took Jack to the hospital on the morning of the 19th. Thankfully the consultant could not feel any swelling in Jack’s tummy, so phew for the spleen. He also felt around Jack’s hips and said if the pain continues or comes back worse then we are to go back.

When he looked at Jack’s skin, he said he has no idea what it is. I told him we have been using the cream given to us by the Doctor for 3 weeks now and nothing has changed. He has said to use nothing for 2 weeks and if it does not go or gets worse, then we are to go back in 2 weeks time for further investigation as to what this is.

Update 6th May 2008

Thank you all so much for your messages and emails.

We went to London and saw the professor and another doctor there. They were not 100% sure that is was the MMR that made Jack react in the way he did… although there was nothing different in the timescale other than the MMR. They were concerned about his reaction, but did not want to issue an Epi-Pen, due to the fact that perhaps then the mindset would just be that it was the injection. They want us to make sure he has not become allergic to something now, due to his little body really starting over again. We have been told that if this happens again we are just to give piroten, then to contact them and let them know.

Jack’s appetite is still not back, he is actually eating less than Daisy, and yesterday just had lunch, no breakfast and no tea! He also has a more prominent lisp now.

Update 17th April 2008

We had quite a surreal day today. We ended up being in Jack’s appointment for an hour and at first Jack was seen by one doctor who asked all the normal questions. He asked if Jack had any pains, to which we said yes, he complains of pains in his legs. They continued to ask us but we asked them to speak to Jack, he was very good and explained when it hurt, how often, how severe out of 10 (10 being severe bad pain) and he said they were 6 out of 10 pain a lot of the time and it keeps him awake or sometimes wakes him up. They did numerous tests on Jack, he failed most of them, he could not walk on his heels, he could not walk in a straight line toe to heel, and he could not get up off the floor without using his hands. He also has problems with his bowels and often (weekly) finds himself running to the toilet. They want a specimen checked out to see if he has a dormant problem, if there is no problem in his stools, then they think unfortunately Jack could now be suffering from Irritable Bowel Syndrome.

The professor was asked to come into the room and had a long look at him too; he said we need to get him seen in London by the Orthopaedic doctors. Depending on their results we will see what they will do next. He said Jack could have a problem with his pelvis and this is why his legs are completely turning inwards, thus giving him knock knees. He cannot put his ankles together without the knee going in completely behind the other one and it is getting worse very quickly, bearing in mind that he was only seen in London in February! He said to be assured that he is pretty positive it is not the Leukaemia returning, but we need to find out what is affecting his legs/pelvis and bowels. They have asked that we speak to the dentist regarding why Jacks teeth are falling out too.

If Jacks knees are considered bad by the orthopaedic doctors then normally they operate at about age 10. If his knees are still growing, the will bolt them or expand the gap. However, if they have set then they would have to chisel the bone, as simply wearing braces won’t cure the problem. They need to consider if his condition is going to get worse, as it has depleted rapidly now and if it continues it could really stop him walking as well as he does now. We have to wait and see what London says.

Update 9th April 2008

Jack is doing well, touching wood! He is continuing on the journey to be reimmunised, he is being booked in for his MMR booster at the moment and he also has checks in London on the 16th April, where they say they are going to thoroughly check him out more. Jack has lost 4 teeth in the space of 3 weeks, which is quite worrying as they literally are just falling out! We will mention it on the 16th, although I doubt there is anything that can be done about it.

Update 2nd February 2008

Jack is doing ok. He is due some more of his reimmunisations very soon and thankfully so far has not reacted to the first one! He is incredibly pale at the moment, but hopefully he is just tired. Thank you all for still checking in on him.

Update 23rd December 2007

We would like to thank you all from the bottom of our hearts and wish you all a very happy Christmas and a hopefully healthy and happy 2008.

This is our first year that Jack is not on Chemotherapy medication. A milestone is an understatement! We are both petrified, especially at the moment when he is very lethargic even though he is getting sleep, but we are telling ourselves it must be one of the many bugs that are going around. It is obvious why we are more anxious, as it’s nearly 4 years to the day.

The past 4 years have been racked with nightmares along with amazing experiences – a total roller coaster. We know a few of you know exactly were we are coming from.

Our little man at the moment is tucked up in bed watching ‘miracle on 34th street’ yet he is our little miracle, very apt isn’t it!

We have so many people to thank and we would hate anyone to think that your love, wishes, kind words, cards, messages, gifts, are unnoticed because they truly are not. We have a suitcase at least in the loft of ALL the letters and cards our Jack and Daisy have received. It’s phenomenal. In our hearts we cannot measure the love and words that are said, phone calls that are made and hugs that are felt.

Kevin and I are still together and still in our family unit, which is an achievement in itself. Many families do not make it through as the stress and emotions are uncontrolled, yet we have and we will all be smiling on Christmas morning when our 2 little children have smiles on their faces and we celebrate that we still have them BOTH!

We hope you have a Christmas time of memories and laughter and if you are fighting a battle, then DO NOT give up, keep going, give it your best shot, we send you our love xx

Update 3rd December 2007

Daisy is doing well! She loves school and is doing really well on her words, she gets lots of stickers and ‘excellents’ and she reads her own books now!! She also came home today with the “Headmasters Sticker” because of how well she is doing – she is very proud!

Jack’s spellings went a bit weird last week, which isn’t surprising, as he has so much going on in his head, but he is doing well on his practice sessions at home.

We have had to stop ikaewdo and guitar lessons to get Jack to concentrate on his school work and to help us monitor his concentration, frustrations and behaviour. We think he is fighting many demons at the moment.

They are both getting very excited about Christmas, as I am sure a lot of children are. Jack is racking his brains about what he would like and Daisy wants every advert! Christmas is always a happy yet emotional time for us, as obviously this was when Jack was diagnosed, but this is the FIRST year of him having zero chemotherapy over Christmas!!

Thank you to all of you really! I am sorry I don’t think I got back to you last month, we are still watching everything but things are just manic. Karen and Ellie you go girls!! Thank you to all of you who are keeping in contact – it is lovely and some of you have been with us over 3 years now xxxx

Update 8th October 2007

Jack had clinic today and it went ok, although we are getting a second opinion from London on the 24th. This is due to a problem with Jacks feet. When Jack was on regular methotrexate the skin on his feet was constantly blistering and falling off, it was always put dowm to that certain chemo, we were told it effects the extreme points on the body, hence fingers and toes. However, Jack has skin falling off the soles of his feet and all around his toes again and it is pretty nasty. The consultant said it is due to the infection Jack had 3 weeks ago in hospital and said because it was so nasty this can happen… hmmm, we are not reassured by this and we are getting a second opinion 2 weeks on Wednesday.

Jack has been practising his spellings constantly, so I hope he can concentrate and do himself proud tomorrow in his test, fingers crossed. Jack is also really peeved as yesterday his television packed up! This is his life line at night, as sleeping is still an issue, so he has been going through the Argos book looking for a new television!

Thank you to every one, as usual, that sends Jack and Daisy letters, cards and stories. A special thank you to Karen and Ellie.

Update 30th August 2007

Jack has had quite a strange time lately, bless him. He was quite poorly the other week and was suffering from horrendous headaches that were so bad he would sit in the corner of a room covering his face crying, saying his head felt like it was going to explode. He was also having pains in his privates, so we got him checked out and we were told to monitor him and had open access to the ward as he was beginning to spike some nice temperatures too. Thankfully, that has all calmed down for now.

He has had a nice summer holidays and for the first time in 4 years we were not admitted to hospital throughout the whole break, which is brilliant.

Thank you for continuing to support us.

Update 30th July 2007

Jack is doing ok (I am touching wood) he went for his check up and they were pleased with him. We have been told his skin is growing at 3 times the speed it should be. This is because of the medication, hence why his skin is very dry, especially on his scalp and we have been told to seriously moisturise his skin. His molescum are still growing and new ones are appearing, though on mainly his legs. Thankfully a lot on his chest are healing.

He gained another banding on his aikwaedo belt; he is an orange belt with a green stripe now, so well done Jack! Jack also got a very good school report, woohoo, good boy!

Update 11th June 2007

Things are ok here, though we did have worries with Daisy as she has been complaining about pains in her legs, which really scared us last week. Also, with Jack’s check to London looming last week it was very hard. Still we are still going strong.

Molesum are still causing Jack distress and the nail is still falling off. Jack has been to London and has had a positive appointment. We are due in Margate hospital on the 18th of this month as well.

Thank you all for writing and checking Jack’s own page at Caringbridge. If you do pop in please sign even just to say you have been. Thank you Hayley – we really hope you get a deal when you are older for an autobiography or major stories, you are superb!! Thank you also to Kate Dee, Kate and Ellie.

Update 27th May 2007

Jack is doing well. We have not long been back from a brilliant holiday in America, which is one we never thought we would have, for numerous reasons.

Jack is very emotional still, but again, his face is so different since stopping the medication. It is very strange, a lot of the parents at the school have noticed too.

Jack has the dentist again as Chemotherapy really attacks your teeth no matter how much you brush and take care of them. So hopefully the ones it has attacked are his first teeth.

We have Jack’s check up again soon, so hopefully will all go well.

Thank you for the continued support and letters, they really do mean a lot.

Update 29th March 2007

Jack went to School today; he was looking forward to seeing his friends and brought home his class photo, which is really good.

He was all padded out over his stitches for the possibility of a “football” or an “elbow” landing there! Well, the inevitable happened, so thank goodness for the padding.

Yesterday was a strange day. Jack has suddenly started drinking a heck of a lot of water and we mean pints of water! Through the night he drank 3 pints of water and was also found filling his cup up in the bathroom sink by daddy at 3am.

We contacted the nurses this morning at 8.15am and explained to them that we are concerned at the capacity he is drinking. Is this a side effect? We have no idea, but it is not “normal” behaviour for Jack. He is not attention seeking, as we know that is one of the reasons that Doctors say some children drink to excess because it covers things or gains more attention. With Jack this is not the case, as it is all very discrete. He will ask if he needs to though.

They rung us back and asked for Jack to go into the hospital to have his sugar levels checked and yes, you guessed it, by the finger prick test.  Please understand that Jack is very scared of needles, and the finger pricks HURT! On Wednesday it took me, his dad and a nurse to hold him down, literally, to get a finger prick test.

We are due to get the results of the kidney test anytime; the diabetes check came back fine, thankfully.

Jack has had lots of bloods taken as they want numerous checks done, so he was again held down but was very brave as he had to have the needle in his arm this time.

We should get the results of Jacks Bone Marrow that was repeated due to the previous one being inconclusive, on the 4th April.

Update 2nd March 2007

TODAY WAS THE LAST CHEMO!!!!! Jack has had his last syringe full about 45 minutes ago. We told him just as he was about to take it, that this was the last one and his smile was massive!!!

To let you all know, Jack DOES NOT KNOW, but he is booked in for an operation on the 19th March, Daisy’s birthday, so we are obviously pretty upset. It is to have his Port removed, we have been told it needs to come out now, even though he will still need more injections etc.

Update 27th February 2007

Thank you all so much! Jack had a lovely birthday, grown up, 8 now! Jack got so many cards from different people all over the world – friends here, there and everywhere. Jack had a new bike, heelies and stickers, books, planes, hover plane, moon shoes, he got so much stuff, he was soooo chuffed. THANK YOU AGAIN!

Update 7th February 2007

We had an appointment today at 11.00 but our Consultant was off poorly so we saw another Consultant, which ended up being two consultants.

Jack’s Bone Marrow results returned inconclusive, which is not the result we were expecting to hear, or should we say hope to hear.

The results out of the Bone Marrow that they had were ok, but there are others that were inconclusive – questions were going backwards and forwards and we were totally confused and still are.

Nothing changes, except for the fact that they may be doing another Bone Marrow, to clarify the original Bone Marrow.

They discussed port removal times (when appropriate) there were some discussions about the Septrin. They did discus (which we had not been told about before, other than by karen, Liam’s mum) that they would re-immunize Jack after 6 months to one year after treatment and this completely blew our minds – that they will put these “things” back in Jack. We can see why, all to do with the lymphocytes etc, but my goodness! We will deal with that when it happens.

Tonight is a haze of immense headaches, tears and confusion. We knew it would be a hard day, but we hoped upon all hope we would come out positive, but to be honest we are even more anxious.

We will speak to Jacks Consultant when he returns; they said they would like him to see Jack in one month anyway.

Update 6th February 2007

Jack has been neutropenic since bloods last Friday; he was very poorly yesterday but has brightened up a lot today, thank goodness.

Big Day tomorrow, we are very anxious and nervous about it. We get the results of Jacks Bone Marrow and Lumber puncture and we will find out if there is any Cancer present in his Marrow. Hopefully after 3years 2 months (so far) of Chemo daily, weekly and monthly, the steroids, the septrin, the complete invasion, surely and fingers crossed it will have all gone away.

Update 29th December 2006

Just thought we would update you on Jacks blood results for today 29th, he is even more neutropenic now, so is on 50% chemo, still warm but not at 38 yet.

Update 28th December 2006

We hope you have all had a nice Christmas and Boxing Day.

Jack and Daisy were over the moon with all the presents Father Christmas got for them, all the presents the family got them, then also all the presents lots of you Post Pals people got them – to say they were over the moon, really is an understatement.

Jack has been alright, although he has been getting temperatures since Christmas eve just under 38 and as he is neutropenic, he would have to go in when it hits 38, so we all had our fingers crossed and still have! Today Jack’s temp is still 37.7, so we are just about to go out for a walk down to the beach with Roxy get some well needed fresh air, hopefully!

It’s a strange time here at the moment as 3 years ago on the 29th is when we were called into our local hospital to be told they “think” Jack has leukemia, but it had to be confirmed in London the following day by them doing a Bone Marrow aspirate and a lumber puncture. They then told to us in a definite factual way on New Years eve, so to be honest, at the moment I am not really “with it” and neither is Kevin, it is very surreal.

We are obviously very lucky that Jack is still with us, he was given 8 weeks and we are nearly exactly 3 years into Chemotherapy, we are blessed to still have our little man.

Well best go now, do not want to get upset typing, we send all our thoughts to our post pals families and all the friends we have made.

We cannot thank you all enough for the cards, presents, emails, letters and everything that you have sent to us, if only you could see the smiles on Jack and Daisy’s faces when they opened everything, they were so excited, so thank you. Many thanks to Jacks elf too.

Update 30th November 2006

Jack is getting a few headaches lately and he has also gone back to not sleeping very well. He is wide awake and apart from the odd hour, he just does not sleep! His 2nd oral medication increases on Friday so he will be on 125% of both; we will have to see if that has any effect.

Jack is very excited about Christmas. Thank you to whoever sent Jack from Israel some fantastic puzzles, they are great we don’t know who you are to say thank you to though! Thank you also to Allan Barrett – Jack looooves his advent calendar, you put a massive smile on his face!! Thank you Hayley for your never ending stories, we hope you go far in the future you are so admirable.

We would just like to wish you all a HAPPY CHRISTMAS. We would like you all to know that you all make such a difference to children’s lives, we know you already know this, but there is no way we could ever describe and thank you all. Everyone at Post Pals, who are so dedicated and caring and to all the people that send our Daisy and Jack love, wishes, prayers and thoughts, let alone the gifts. May we all have some “good things” happen, may we all have some “luck”, and may you all get the love we send to you all from our family xxxxx

Update 28th November 2006

We didn’t see the Consultant about Jacks nail as the Consultant did not turn up for his appointments – as you can imagine lots of unhappy people! We have managed to wangle another appointment on 6th December, so another anxious wait.

Jack is doing ok, we have to speak to London tomorrow about the possible increase of his Methotrexate as he has been on 125% chemo for ages and his bloods are so high but he is pale, so we are going to speak to them.

Jack and Daisy were both brave with their flu Jabs on Thursday and Jack had his Vincristine on Friday too, so he is “steroid boy” again now, watch out fridge!!! Five minutes after eating the whole Sunday dinner and pudding he was asking for cereal, we have to say no or he will be so poorly, so he was not happy but never mind.

Update 31st October 2006

Jack has done better since coming out of the Hospital thankfully. Other than having this dreaded cough that we are all suffering with, Jack is doing ok (touch wood). He is due his lumber next Wednesday (the 8th) and will be seeing the specialist about his thumb on the 15th. They had previously asked for the nail when it fell of again (it’s happened 5 times now) so that was sent of 2 weeks ago. They were anxious about a lump under Jacks nail and mentioned testing it to hopefully rule out Cancer, so we will see on the 15th when it is looked at.

Jack is counting down to Christmas; I think he could tell you the exact number of hours! Thank you to everyone who has sent post to Jack and Daisy this month.

Update 1st October 2006

Jack has not been very well the last month, we have spent 3 weeks in hospital and they were totally unaware of what was going on with Jack. He has been on Gentamiacin, teicploanin and tazocin, anti biotics as well as having blood transfusion; there is even talk of removing this second port for fear of the bad port infection!! We are still none the wiser as to what was going on with Jack although it’s very likely straplycoccus is a major runner in the diagnosis! We’re at home now thankfully and getting back to normal. We will be sending Jack to school gently this week as he will be very anxious about going. As we said it has been very tough on everyone but the support from family and friends locally and through Post Pals and Caringbridge has been unreal, thank you!

Many thanks to Karen and Ellie who have sent Jack and Daisy soooo much stuff it is unreal! Thank you also to Celia Raven, Eileen, Ellie’s parents in America. Kelly, Darren, Chloe and Charlie for visiting Jack in hospital and bringing them both some presents and Hayley for all the stories she sends Jack. Thanks of course to all you Post Pals as well!

Update 3rd September 2006

Vincrstine went well, that was the least of Jacks worries really…

He was playing with his cousin’s friend on Thursday and he ended up falling backwards straight onto the radiator with his head hitting it!

They came downstairs and said that Jacks ear would not stop bleeding. We didn’t know what had happened, and my sister and I were in the middle of sorting out her kitchen. He was very calm holding his ear, then he let go, OH MY GOODNESS how much blood! It was all down his t-shirt, his trousers, everywhere. Then he cried as the pain kicked in, we cleaned him up and there are 4 slices on his ear, he must have landed on the corner of the radiator. We bandaged his ear when it finally slowed down bleeding and then I went to mums to get her to check it. Mum checked it and Dad mouthed the word “OUCH” to me and said it looks clean but just to keep a watch on it.

We rang the hospital and were told we were doing the right thing, but if it continues to swell then we are to take him up to get the blood drained out of his ear, but not to tell him what will happen as it is quite uncomfortable. Anyway, it didn’t swell any more and we were going to the hospital Friday morning anyway, so when we got there I asked the Nurse to check his ear after she had done his Vincristine. She cleaned it up again, then went and got a Doctor, whom then said “Jack you are lucky you didn’t lose the top of your ear!” and on looking at it now he was very lucky. He said we did the right thing on it happening with the pressure etc, although as you can imagine it does not stop there! This is Jack we are talking about! He has lost slight hearing in his left ear, the outside of his ear is pretty blue through bruising, but it has affected his hearing and if he develops tinnitus we are to take him straight back. So let’s hope in a week his hearing is fully back. Jack is also intermittently very yellow so we are keeping a check on that too. Oh and Daisy fell over and put 2 teeth through her lip last night, just to finish it off!

Thank you’s to Kate and Ellie, to “daddy’s girl” who continuously sends Jack bits and writes to him. To all you posty girlies and boys, to Allan and Julie Barrett who are always sending Jack letters and cards and to Celia, Nick Robert and Stewart for postcards, emails, letters, you name it they send it!

Update 4th August 2006

Jack is doing ok but every now and then gets tummy ache and to me is looking a bit skinnier, but hopefully this is just “growing!” It was great because at the end of the month Jack met Chloe G, who is also a post pal. They all played, as well as Chloe’s brother Charlie and our Daisy, and Kelly and I had a good old chat!!

Jack had his vincristine this morning, so he is making the most of playing today with his mate Will while he can, as he legs will be hurting soon, probably later tonight.

Good bit of news though is that he is now yellow belt at aikaewdo. We are very impressed with him!!!

Thank you to Kate and Ellie and all the Post Pal girlies who constantly send Jack mail. Thank you also to whom ever sent Jack some pictures from Camp Agawak in Minocqua; there was no name in the letter.

Update 29th June 2006

We are very pleased with Jack at school at the moment; he recently received “Pupil of the Week” throughout the school, in which he went up in assembly to receive his certificate – we were very proud parents!!!

Jack has had high bloods for quite a long time and they suddenly crashed last week whilst he was on the steroids, which was very strange and also un-nerving. He has been complaining of earache, and has also been exceptionally tired and was neutropenic last week.

He has been camping with Daddy so has had fun, and has enrolled in Ikaewdo, so we will see how that goes when he attends.

We have contact with a few families who have sent Jack some bits through the post and they also have very poorly children whom we think and pray for daily. Their names are Ellie and Skyler. There are many more children too – if you want to find out more about them, go to Jack’s Caringbridge site and their links are on there.

BIG THANKS to all of you at Post Pals. We would also like to say thank you’s to Sue, Kate, Viks, Ellie, and everyone else that send Jack mail, he gets so excited.

Update 31st May 2006

Jack is sporting a new haircut, spiky now, not long anymore, sob sob! He has been good, taking his medicines as usual, his bloods have been baffling us all, they went exceptionally high, no idea why, as he is on 125% Chemotherapy too? They settled a bit last week just before his Lumber Puncture, which was good. We will wait and see what they are this week.

We now have a trampoline, so this will hopefully get Jacks leg muscles a bit stronger, all that bouncing. Thank you for the cards you send Jack and the pressies. Thank you very much to Kate Dee and to Ellie and Karen, Lorna and a few more, you are always sending things, may good things happen to you all xxxxx

Update 29th April 2006

Jack is doing ok and is back at school but he is still neutropenic though. He is due a lumbar puncture in May and his chemo keeps going up and down.

Update 30th March 2006

Thank you again to Post Pals for all your hard work. Jack has not been very well lately, he has very very low bloods so is looking so white, and does not have as much energy as normal. He has been missing a lot of school and therefore missing his friends. We’re waiting to see if he needs a blood transfusion at the moment, because his regime has him transferred very low, a lot lower than most we know. Three weeks of half term starts Friday, let’s hope Jack is well enough to mix and has enough energy to run around!

Thank you for the reply from the school in Japan, we answered them when they wrote and they have replied again, GOOD LUCK to them all with their exams!

Update 27th February 2006

Jack has been doing ok, although his temperature has been up and down as he has a nasty cough. His bloods are staying very high even though he is on 125% chemotherapy at the moment, hopefully we shall get some news when we speak to the Dr’s in London on Friday when Jack has his Lumber Puncture. His sore feet eased off a bit a few weeks ago, but are getting bad again. We are now being referred to another dermatologist locally and are waiting to see him, so we will see. His nail is horrid too and close to falling off again, bless him!

I’d like to say thank you to everyone that sent cards, presents, ecards, thoughts and wishes on Jack’s website, he had a lovely 7th birthday and you all made it even more special!!

Update 28th January 2006

Just to say a BIG thank you to everyone who has contacted Jack and any messages at all, especially Celia, Eileen and Ben for your contact with Jack – it’s been a weird month as you all know with “The Tree” incident, but all came out on top thankfully!!

Jack has now been the face of the new Cancer Research Campaign of Horses for Causes – so as much as he is our Little Star, he is also now a star of screen and newspaper!!

Update 16th January 2006

During a family day out, Jack climbed and then fell 7 feet out of a tree. He ended up being rushed to hospital on a spinal board. He was told he is very lucky not to have damaged his spine. Jack is obviously very sore and shaken, so I’m sure he would appreciate some smiles sent his way!

Update 30th December 2005

All of us received loads and loads of cards and quite a few postcards, we cannot thank people enough for sending them. The postman had a very busy time this month and we received 5 cards (well Jack did) from a school in Japan!! Jack is writing back to them and we also received some from Israel, Australia and America. This wasn’t even including the big parcel from the Jack’s elf! To say thank you seems so little but we were truly overwhelmed, THANK YOU ALL.

Jack is doing ok, he was ill Christmas Day night, a lot to do with the Vincristine he had on the 23rd December. He always reacts badly; itching, aching, crying, a lot of discomfort, and when you have been kneeling on the floor playing with toys even the healthiest person gets achy knees!! He has gone a bit downhill the last two days, but we did manage to go and find the snow and Jack and Daisy had a brilliant time. Daisy is very poorly at the moment, we are hoping she gets better very quickly and fingers crossed Jack does not get worse.

THANK YOU to everyone that emails us, writes, send gifts, anything. I just wish we could thank you all individually, sometimes we can, but please if you have EVER contacted Jack, this is for you – THANK YOU!

Update 19th December 2005

Jack’s feet are getting bad again and he has his Vincristine (bigger chemo) due on Friday, which usually takes a couple of days to effect his joints. He is now counting the sleeps until Christmas day so we’re just hoping the excitement on Christmas day relieves the discomfort for him.

Update 16th December 2005

Jack was back in hospital in November as he has been having lots of problems, including very, very sore feet and his body had rashes all over.

It has been a tough month for Jack and his family and now Jack has viral gastroenteritis and is reacting against a chemo, although the doctors don’t know which one yet.

Update 29th October 2005

Jack is recovering well after his port being inserted on the 24th of October and he is now at home. His bloods are lower so he is neutropenic, but he’s doing ok and is active and playing. He is still finding it tricky turning his head though as there are a lot of stitches and tape. We are up in London again on Monday (31st) to check how he is progressing, so fingers crossed all will be ok. The needle will be removed on Monday, this will then show us exactly where they have placed his port and how well it works (keep those fingers crossed!) Oh and it doesn’t help when he falls out of bed straight on his chest!! Never before has he fallen out of bed, how typical is that?!

Update 15th October 2005

Jack had his port removed on Monday due to it being infected, not everything went straight forward due to developing pneumonia, he is also neutropenic so has been on IV antibiotics and having a delay in his chemo. He was discharged on Friday. He will have another port placed in the near future.

Update 10th October 2005

Jack’s port has been coming through the skin and so he is due to have an operation this afternoon to have it removed.

Update 25th September 2005

We had a great family holiday to Butlins, where Jack had a lovely time.

His port is very very red and blue today. He is having his bloods done
tomorrow, so we will ring London and let them know how it is looking. To us this just proves he is not bashing it, as he has not been at school to rough and tumble?!

Update 18th September 2005

We went to London on Friday 16th September, for the Lumber Puncture and the obvious checks that go with it. He got the thumbs up for most, but we mentioned we were concerned about his “port”. When they had a look they realised immediately what we meant, we explained it had been getting worse over the last 4 weeks, and is very red and blue. Originally the Community Nurse thought he may have bashed it and caused it to bruise, which could have been the reason, but not after 4 weeks, and looking at it today it is worse still. They said if it has not calmed down in one week, they would like to possibly do a Lineogram. This is where they place dye throughout Jack’s line, to make sure the tubes have not moved or detached or twisted anything really. However, we are pretty sure this has not happened as the port bleeds back very very well at the moment! The skin is extremely thin now, but then whose wouldn’t be, considering as a rough “under” estimate, he has had 700 needles inserted into his port. Also with him growing, the skin stretching it isn’t good. We were told of the risks of having the port and one main risk, although extremely rare, is for the port to “come through” the skin. This is obviously what we are worried about, so when he has his bloods on the 26th we are going to talk to the Community Nurse and agree together how it looks. To be honest, WE will decide as his parents, but they may then want to finally at last resort to removing his port by an operation. Then they would have to put a brand new port in to the other side of his chest, as they cannot be put back in the same place, but this will be in a separate operation.

Jack’s bloods are still high and they are increasing his chemo next week once we’ve returned from holiday.

Update 5th September 2005

Well school didn’t go too well, he lasted until 1.00 ! They rang as he had a temperature and felt sick, so daddy had to go and get him as I was at work.

When he came home he rang me and was very sad, firstly at feeling sick again and secondly as no one would play with him. He is heartbroken, kids can be nasty at times. I have rung the parents of one of his friends to try and find out why and have also rung the school to see how he has been, so we will wait and see what tomorrow brings…

He doesn’t want to go back now though, so he could really do with some well wishes.

Update 4th September 2005

Well Jack’s bloods are still very high, but there seems to be crossed wires or indecisions at the moment as to whether they are going to increase the chemo or not.

He has been suffering from awful sickness and we are wishing it to be gone, for obvious reasons, but also because he is back at school tomorrow and really looking forward to it. He has NEW SHOES he wants to wear!

Update 25th August 2005

London was ok, even though we all looked mad in our shorts as when we left here it was sunny!! When we got there it was pouring down, we looked mad!!!!

They are going to check Jack’s bloods this week more in depth and are possibly increasing his chemo, as his bloods are a bit strange to say the least. They have confirmed that Jack has a very rare high H.B level, which will explain a little of his energy levels. They agree with Jack seeing the psychologist about his worries and nightmares and things and we have explained that he thinks we are going to die.

Night we came back from London he had a horrific nightmare, that he would not tell me or his dad or my brother about, said it was too bad. Luckily I went to see my sister and he told her, it was not nice but at least he told her.

So we will know more on Friday with what they will want to do with Jack’s Chemo.

Update 22nd August 2005

Jack is doing O.K but is a bit up and down at the moment. He is having problems with frustration and anger and is seeing a Psychologist once a week which seems to be helping. He saw him about 6 months ago for 4 months then we started it again 4 weeks ago.

We are going to London today to see the professor to have a check-up and to check Jack over, he seems to have a lot of bruises at the moment, we don’t like bruises!! Will let you know how the check up goes.

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Harry G

12 June 2012

Story written 2004

Harry can have seizures any time of the day or night and has severe brain damage and learning disabilities (severely globally delayed with progress at great delay). However, he still loves to play on his special swing, or listen to Mozart when he’s not feeling very good as it makes him relax. He does walk but in a very unbalanced and un-coordinated way, when the weather is good he likes to go out for little walks for a short distance with his mum. He is unable to speak or communicate other than ‘happy’ or ‘not happy’ but often laughs and smiles, with abundance of personality. When themed art Posty Projects arrive, Harry’s sister Eleanor who is 8, makes them up and puts them in Harry’s room. Together, Eleanor and Harry’s mum Su, tell Harry who they are from, point to the colours and tell him all about them. They hope he understands just a little of the thought behind them. Posty doesn’t just help Harry, the support means so much to all three of them (Harry’s Dad chooses not to be with them, and his Nanny and Auntie live in Denmark). Maybe Harry is not so bad when you think that a typical ‘West’ child often has no head control and is unable to talk, walk or self assist. Everything Harry has is ‘special’. A special trike, a special large cot, a special highchair, special shoes, special car seat. But then, Harry is special and is much loved by his sister and mum.

Story update 2007

Harry is now just before 6 years of age and in the 5 years 10 months since epilepsy came to him, we have adapted, changed, cried, moved, learnt to live with epilepsy and found new achievements for him. We have explored any and every avenue to improve life for and with Harry – and I think we stand victorious in the original prognosis of no mobility or neck control! We have achieved victory after victory with the Statutory Services and they have come to realise that we indeed know better than they regarding what Harry needs. Harry has been on the Ketogenic Diet now for 2 1/2 years of which we’ve had two years completely fit free. This is a unique achievement, as most people hope for just a small improvement. There is an enormous amount of damage to Harry’s brain and Harry will probably always need assistance with a lot of things. But as Harry gains in abilities, the need for everything adapted becomes less than it was.

Update 3rd January 2011

Four weeks solid freeze and a white Christmas – well, what an end of year 2010 was! And this update is also going to be the last one for Harry as I feel it’s time we move on from Post Pals. We have been part of Post Pals nearly since the start as Harry was child number 5 or 6 to join; hoping memory serves me fairly right.

Being part of Post Pals during Harry’s early years of difficulties gave us a belonging we could only have dreamed of, something I’m sure many Post Pals children and their families are realising after joining. And we have been fortunate to make some lovely friends with some of the volunteers too – Kate Dee was our first ever Christmas elf and my, did she spoil us rotten!! We’ve come to love Maria and Michael’s picture letters. Sami has regularly been in touch virtually since we joined and Hanna joined Ellie in Ellie’s Pyjamas Parade to raise money for Post Pals (Ellie’s second fund-raiser for Post Pals) and has since written faithfully to both Ellie and Harry amidst her own college work etc. We have followed Kim on her journey to marriage and soon to be family addition and have loved all your lovely and really thoughtful parcels and endless cards. Your Mother Day parcel to me is still by far the BEST EVER.

Throughout my struggles with the Education system for Harry, I now feel I stand victorious. That the Head Teacher left with the only dignity she could possibly muster (she got married… poor bloke…) and the school have in the time from the October half term when she officially left, till the end of 2010, managed to decide to teach the children in different groupings to how it used to be done, and this was the main cause of my ongoing complaint. So, from January 2011, Harry will be taught in a small group with high staff ratio on the level he deserves to how he can understand the world. I will continue to home school but now in addition to attending school, as they will now complement each other instead of not.

Harry still cannot speak. But he can chew, walk, eat and drink with no help. Things I was made to believe he would never do. The list of things he cannot do is still there but above anything else he can or cannot do, Harry laughs and loves. There was a price, but we stood victorious in the name of conquering Infantile Spasms and limiting the acquired brain damage and we found a way when they told us there was none. And some of you followed us on this journey, gave us hope and encouragement.

During the last 6 months or so, I have started a Facebook Carer Group and I shall continue to expand on this. I have also joined the Aiming High Parent Participation for Staffordshire (there’s one for every county) and I shall continue to work there improving services for ALL our disabled children.

And one day, maybe I’ll even finish my book of Harry’s journey. One day.

I have met and got to know some truly inspirational people through Post Pals and cannot mention you all by name, but you’ve all played a big role in our lives and I thank you for that.

Sue xx

Update 30th October 2010

Firstly, to those who’ve looked in vain for September’s update, I apologize for the lack of one. Going back to school is always hectic, but in our house we’ve also started part-time home schooling for Harry and what little time I did have, has now disappeared. On top of this, I had my gall bladder out at rather higher speed than I had anticipated – 10 days from seeing surgeon to lying on his table! I have known an operation was more than likely and waited for the right time for staff to help me with Harry. When the day actually came, and this has been discussed over at least 10 months, it was ‘inconvenient’ for the staff in question to actually help out. Luckily, good friends and a fantastic Ellie all pitched in and I got my troublesome gall bladder out. And I can’t say I’m missing it! Years of indigestion type pain appears to have stopped so I’m happy!

We made a good start to the SonRise program which had to be interrupted due to my op, but for the last week or so I am now back to normal and we again venture in the room with Harry.

Ellie, taking a turn with him the other day, excitedly came telling me ‘Mum!!! When Harry couldn’t reach the toy he wanted, he turned to me saying ‘Ellie’ clear as day and I gave him the rainmaker saying ‘Rainmaker’!’ Harry is fascinated with the ‘bye bye’ sound and is attempting ‘Mama’ which is fine with me – anything!!!

I approached the school governors early September about (legal) flexi schooling and was assured a quick response. I am still waiting 5 weeks on. They were not so keen in me ‘just keeping’ Harry off school due to the absence record going sky high but this will actually trigger Education to question why the absence is so great. So, in lack of a response, I have now advised that after the October half term, I will continue with a high absence as it would appear the Special Needs School appointed by the County, are somewhat struggling in addressing the pre-verbal stage Harry is at. God help us if this is the best a special needs school can offer…

During the time I spent recuperating from my operation and was unable to do any ‘normal’ housework, I spent some more time on Facebook. A friend and I have now founded a Carers Group as there is such a need for carers to meet and ‘be normal’ for a bit! It has taken a little effort to start off, but numbers are growing and we envisage the group will just tick over nicely with a few dates for lunch, shared Christmas shopping etc doing things we all need to do anyway but it’s nice to do together!

Our round of thanks has to start off with Hanna! How you find the time to write so much so often Hanna, is just beyond me!! But it makes Ellie smile at some of the things you tell her and the pictures you stick on Harry’s are just lovely! Donna Bedford sent both lovely bracelets, thank you. Thanks to Karen (Sami) for the card. Valerie Simms sent loads of scary relics tucked in the card, a massive hug from Steph H, a very spectacular pig collection from Anne Calico, the scrummiest smiley cupcake from Emma, loads of snail mail from our Sarah, from Michael and Maria too and ‘Well done Michael for doing great in your race!’, and last but by no means least to the Lawrence Family (soon to expand in numbers!!) for the speedy mouse card – and again for the SonRise box which we’re incorporating in the program now!!

Writing this on the Spookiest Night of All – Harry is not ghost friendly – I do hope everyone has survived the scariness and now look forward to the celebrations of Guy Fawkes! There is something magical and autumn like about a bonfire, especially one you can toast marshmallows on and have a hot chocolate – or so Pooh Bear seems to think!! The Christmas rush is nearly upon us – so wishing everyone a peaceful build up to the forthcoming festive season! Lots of love from us all! xx

Update 30th August 2010

Even though this is an August update, we are STILL waiting for decent summer weather! You’d be forgiven for thinking it’s October – not the end of the school summer holidays!

Ellie and I have been really busy swapping everyone’s bedroom about in our ‘Great Plan’ for Harry. Ellie is now downstairs which she is rather liking, and Harry is now upstairs in our old office that is now completely re-built with new flooring and a custom made bed for our little man. This frees up the second bedroom which has also been re-floored and is now SonRise Room!

At the beginning of August, we took Harry in there for the first time and his reaction was so funny! He was laughing at us mimicking all his funny ways! We work with him in 2 hour slots and when the ‘lesson’ is over, we’re knackered and Harry quite happy to carry on! Ellie is joining in the program too which is such a help for me. After a week, I’m certain Harry started saying ‘Ellie’ – he would wake up in the morning and instead of his usual singing, he’d shout ‘Ellie’! Bless, she’s worked so hard with him and he obviously loves it!

We had committed to one or two daytrips, so we went to Blackbrook Zoo with Walton Hall and to Drayton Manor too. And we really enjoyed those! The activities were arranged from the school that will become Harry’s high school in two years time – and how amazingly different that school is to the one Harry attends now. I just can’t wait for Harry to go! I can’t even say the high school is better – it’s simply just in another league and comparing the two, you’d struggle seeing they both cater for the same kind of kids!

We have had some lovely mail this month – kind thanks all round! Maria and Michael have made such a nice picture letter again – we really enjoy them! Samara has been spending hours making the tiniest stars you can imagine – every one so perfect! And they all came in cones so they look like summer icecream! We’ve hung them on the patio door and they look fab! Emma has written to Ellie and yes, we have yet to miss a Post Pals BBQ! And Ellie says ‘it’s not about the brave things you do in life – it’s about the difference you make’ – I trust you know what that means Emma! Annie from Bristol has made Harry an aeroplane card that he finds quite amusing and likes to get us to move. Harry giggles when it flies across the sky! Hanna has been really busy with end of term college work, driving test and still managed to find time to make such lovely arty cards – 6 in total over just a month or so! Fingers crossed for next time Hanna. Kim has sent a strawberry smelling card – just as nice now as when it arrived! – and an IFO card that made Ellie and myself laugh! And then, Kim has spent what looks like HOURS in finding SonRise things for Harry’s room which is just so thoughtful – thanks Kim.

Ellie is spending the last week of the summer holiday in Denmark visiting her Nan and Auntie. Looking at the mountain of stuff she’s intending on taking – I remind her it’s only for 4 days but it looks more like 4 months! I gave up arguing with her when she said she intended bringing her dressing gown…. ‘A girl can’t be too prepared’ she replies! Try telling that to the airport check in staff who will charge for excess luggage! Or maybe two airplanes are required to shift all the stuff!

As the summer holiday draws to an end for another year, this time I sincerely hope for an Indian Summer! I feel well and truly cheated out of paddling pool days, children giggling in the gardens, lots of BBQ’s and salads, and instead have the central heating ON and am cooking winter roasts! But I’m sure I’m not on my own wishing for warmer days!

Kind thanks to all who take such a lovely interest in Harry and his journey, and are of such support to Ellie and myself!

Update 8th August 2010

This is an update including June and July – apologies to those who’ve looked in vain!

June brought Harry’s 9th birthday which was kindly remembered by so many of our Pals – and July brought our Post Pals annual party which we attended and enjoyed. Thanks again to Jan for lending the venue, but more so to Viks and her parents for their never ending Post Pals support! For me, it was amazing meeting ‘feedback Kate’ for the first time ever! And thank you also to Viks for her lovely Mr Tumble DVD for Harry!

Claire, Michelle and Gary from Liverpool, Susan, Myk, Amethyst and Breeze, Jenny Orpwood from Penzance, Kim, Lee and Bridget, our Hanna, Sarah G, Sue K and the cute devil, Alfie, Tracy from Bristol, Kenyan and Zachary, Jenny and Jess, Ruby, Tina, our Maria and Michael, Lynn S and Hilary all sent Harry birthday wishes and gifts! I would like to remind our Post Pals friends that Harry actually cannot write and although it would be so lovely having penpals, his Mum sadly lacks the regular time to do this.

Harry has now had end of year school reports including a large section on how Harry has learnt about Tudor Sailors and the Statue of Liberty in Humanities. Those who’ve met Harry are totally allowed to laugh – because that’s exactly what I did! I queried it with school and their response to me was that they think Harry does get something out of learning about this. I would like to meet the typical 9 year old (without brain damage and autism) who can actually relate to these topics! So, in a way school has just done me a huge favor – along with the OT observation I finally got the week before end of term that confirmed my suspicions on Harry’s school day – so, it’s taken me a while to consider our options but I’ve finally decided – SonRise, here we come!

So, everyone has moved bedroom and as I write this, the joiner is doing some major work to make Harry a new bedroom and make the SonRise room ready.

Whilst the summer is upon us, the promised BBQ one must, again, have gone somewhere else… We’re not having nearly enough days in the garden as we would have liked.

Having met with Harry’s social worker, who after seeing latest reports now agrees school is somewhat missing the point with Harry, we are going for a re-statementing of Harry and also a meeting will be called into new term to support my home schooling.

My ongoing complaint about schooling provision to Harry has produced little, I am very sad to say. So, as I am not alone in this, we are now stepping up the game – if anyone is experienced with challenging a Head’s leadership, please mail me as I need all the help I can get!

Wishing you all a lovely summer and great summer holiday!

Update 9th June 2010

We’ve been busy in the garden on the nice days we’ve been lucky to have – we’ve painted the shed, some new fencing panels, and generally brought the garden back to ‘fairly presentable’ after the long winter. Harry and I are still watering our potted vegetables – one or two have had a minor set back so we’ve had to re-sow.

Ellie and I left Harry at home to have a week in the sun and to recharge our batteries – just lovely! We were extremely lucky with the weather as the days around our break were wet and not so nice but our days were just fine.

The situation with Harry’s school and education is now coming to a head, in the sense that we are meeting an Inclusion Officer to discuss the way forward – not just for Harry but also for the other children whose parents aren’t ‘thrilled to bits with school’. There are many issues indeed – too many to go into here – but we have a 2 hour meeting scheduled and I somehow am not sure that is enough time. I already understand that the Department of Inclusion is directly involved at school which indicates there is more to this unhappy situation than I am aware of! I have been promised an explanation, so that will be interesting! More of this in the next update.

It’s been a busy postie month for Harry! Andrea from Darwen has sent a lovely card, Despina sent a postcard from California, Jenny Flack sent a lovely cupcake card and Ellie asked where the cake was! Jenny, thank you for your lovely words :-). Hanna sent Igglepiggle on a card, Shay some sticker animals and a super card he made himself, Nicola a fab Scooby Doo card, a Groovy card from Kim, Margret Nagy from California sent cards to both, Stephanie, Dominic, Karen + family sent Harry a figure of Mr Bump and a Hat Trick Hunter bean bag boy, Sarah G sent some really good poems and a letter, and Bradley and David from Castercliff Primary sent letters and pictures. Many thanks to all!

We have just had the Whit week off with super weather for most of the time – so good, we had the pool up! The children are back to school now, the weather has dipped a little but hopefully the sun will start shining again so we all can enjoy a decent summer! We are looking forward to the Post Pals BBQ in a few weeks time – it will be great to see everyone again!

Update 1st May 2010

This has been an unusually hectic time for me and I must apologize this update also includes March that I just never got to do. I’m very sorry to those who have been looking and found nothing.

Going back to March and Mothering Sunday brought an absolutely amazing parcel from Kim Lawrence who is one of the Post Pals volunteers. The parcel was simply an Aladdin’s Goodie Box for a Mum – with chocolates, candles, socks, teatowel for girls, relaxing sleep therapy and so much more! What a fabulous present, thank you so much Kim!

Then the Easter Bunny hopped by our house with rabbits and chicks from Hanna, and cards from Nicola, Sarah G and our Fairy of Many Names!

World Book day was celebrated in style from Alice and Alex who sent a lovely parcel – I managed to take a picture of Harry amongst the goodies and I will mail it to Post Pals to be put up on the picture wall!

Harry has had a pile of mail starting with a red sweetie card from Julia, Gunnar and Jamie Lee have drawn their guinea pigs Chuncky and Bebo, Tristan wrote a long letter telling us all about himself being a budding wrestler and sportsman, the coolest monkey card from Rheanne, a canal picture and swan story from Sarah G, lots of lion smiles from our Fairy of Many Names, a super lion card from Sarah, a cute kitty from our Sami, April Fools smiles from Sarah G, Hanna sent Meg and Mog Coloring book for Harry and the most special card was from Matthew Coxon who, like Harry, is autistic and epileptic – so Harry has a special buddy now 🙂 Thanks to Mum for helping writing the card.

Ellie, of course, has her own Postie Mail with a long letter from Hanna and a very cute chick! Ellie is a little snowed under at the moment Hanna with Home Learning Projects (one a week!) but says she’ll send you a card from Portugal as we’re going on holiday there in two weeks! A lovely fairy card and long letter from Libby, Easter wishes from Sarah G and a sweet little duck card from our up and coming Hollywood Star – don’t forget us when you get famous!!

The ‘thank you’s’ out of the way – March and April have been extremely busy in our house. It was Ellie’s birthday too – the official age is 14 but I suspect Ellie is much older most days!

I must have been mad to accept a German exchange student for 2 weeks, but none the less, I did. Luckily Lea’s English was better than I had dared to hope and the girls got on well – but it was harder on me than I had expected.

Ellie then went for a flying visit to her Nan in Denmark and was only meant to be gone 3 days but as things panned out, she was due to return on the first airport closure day and simply just had to sit tight. I was trying to find an alternative way to get her home but it included me fetching her by car which was a 952 mile trip each way! And as both Sealand and England are islands, both of us were stuck in getting across the water so we ended up sitting the delay out, and Ellie was pleased to return home with a five day delay.

Having had nearly 12 month since a proper break, I booked a holiday for Ellie and myself for mid May which we’re really looking forward to. I have somehow managed to get roped into lots of worthwhile things relating to autism and disability, but sadly at the cost of other things, particularly looking after myself, which I am beginning to realise is not so good. I have now re-designed my respite to be more up to date of what works for us with staff I can totally trust in a timescale that actually works which the previous respite did not really account for. I’m also beginning to have to say no to things close to my heart because I simply have to take time out and get well again. I anticipate homeschooling for Harry as our County is in the questionable group of ‘Top 20’ meaning the top 20 WORST funded Counties in Great Britain for education. Although negotiations are still taking place about an alternative approach to Harry’s schooling, I am anticipating having no choice but to take Harry out of school – and I can’t start that journey being worn out.

Harry is actually doing well – apart from unexplained sudden hayfever symptoms when riding for RDA the last two times with his face swelling up so he looked quite scary. Before anyone worries I just left him on the horse – I go riding voluntary anyway as it happens, so I am there although not working with Harry. I just keep an eye on him and the first time it happened I simply whipped him off the horse into the car and straight to the doctors! I am very much on top of this having returned to the doctors and Harry is currently on medication and due back this coming week for check up. I will monitor this closely – riding is of such benefit to Harry, but of course, I can’t have his face swelling to unrecognizable proportions, so we’ll see…

The Radio 2 show have been running a Dig In campaign all spring – I sent off for my free seeds which Harry and I have potted and are watering frequently. Not sure what Harry gets out of this but he has recently been ‘helping’ me in the kitchen by stirring sauces and turning things in the frying pan which he seems to enjoy. So, we’re having a go at DIY gardening in containers too! It’s got to be containers because our little Jack Russell is a monster and wrecks the garden and any plants in it too, so we’ve put it all out of reach so we have something to harvest!

Wishing everyone a lovely spring – enjoy the sunshine – let the kids get out and about – early BBQ even… until next time xxxx

Update 4th March 2010

February is always the shortest month of the year but it is crammed full of Valentines, Half Term and not forgetting Pancake Day of course! Harry had 4 Valentine cards to much amusement of his sister! I’m sure you know who the guilty parties are! Many thanks! Pens and pencils must have been sharpened and dug out from drawers and put to good use, for Harry has had tons of mail this month! Sarah G, Beddy Bear, snail mail and letter from our Hanna, a sunshine card from the Gough’s, a beautiful picture postcard from Sarah in the US and the longest illustrated letter from Maria and Michael – thank you all round. I’ve updated the picture of Harry from World Book Day when he went to school dressed up as Woody – even he thought it amusing when we paraded in front of the mirror!

Nothing much to update on Harry this month – I’ve gone in the ‘think tank’ to work out how to apply the SonRise learning to include school and I’ve not quite emerged yet! A plan is slowly coming together. Harry’s review at school is due next week and I intend to ask for a timetable so I can see when Harry benefits from being at school and when he can work with me at home.

I have approached the Uni and the College to see if they’d like to offer their Childcare students an opportunity to work closely with an autistic child, but they cannot due to CRB clearance issues. All these laws now begin to hinder the people who perhaps want to help out on a voluntary level which is madness! So, I am still in my think-box – I cannot do the program single handedly and need a little help – when I think how wonderful an opportunity it can be to help someone out of the Autistic World into ours, it saddens me that a piece of paper puts it all to an end.

Update 8th February 2010

After 3 years of trying to find a way to leave both children for a week, I finally sorted it this year. So, the last week of January, I attended the SonRise program in London to basically learn how to join Harry’s autistic world and introduce our world to him, hoping we can make that so interesting that he would actually like to join us. There’s a decent success rate and most, at the very least, achieve a degree of speech.

This change includes either taking Harry out of school to do program at home, or convince the LEA they would like to fund this and have this done at school.

The first week I was back home, I went into cleaning mode to sort my thoughts out. The house is now cleaner than ever and my thoughts are taking shape as a PLAN! I am painfully aware this new program will mean many challenges – some I cannot overcome but have to find a way round.

One of the biggest fundamental changes they recommend is the removal of battery operated toys, as they explain that autistic children concentrate so much of the actions of a toy they become unaware of the world around them – which in essence supports and aids the autism. So, a change of toys for Harry! He has discovered the joy of books and lots of other things and doesn’t even seem to have noticed the removal of some items. I have left him a few beloved ones as I do have a heart!

Harry received a Smile Box this month and a beautifully weighted quilt from Viks. For all the mail Harry got – many thanks.

Ellie is settling into her new school well and is enjoying being in a mixed sex class instead of the ‘boys exclusion zone’ from her previous school. That school may achieve outstanding results, but part of me thinks it’s unnatural to segregate sexes from such an early age. Anyway – hormones seems to have set in with a vengeance in my teenage daughter, resulting in some probably fairly typical family issues.

There isn’t much else to report this month. I’m now waiting for a pediatric assessment of Harry for learning. Myself? Well, I’m waiting to hear if I can have my troublesome gallstones removed by operation – they have been bothering me for years now and our local hospital misdiagnosed and I have consequently been on medication for years that I don’t need. So, having got fed up with my own health, I sought a second opinion and am now just waiting to hear of final action.

Wishing you all a great February Half Term holiday.

Update 15th January 2010

I’m writing Harry’s update mid January after a very hectic 4-5 weeks – apologies to everyone who’ve looked for the update and not found it.

The Christmas build up was lovely – frequent deliveries from Santa Post via the Mail Man. Harry was in the Christmas play at school which usually is a themed story chosen by the children and not the traditional nativity play. I thought this year was even better than usual – The Santa Express. A wheelchair was transformed into a train which took you from scene to scene. Harry was a ghost and that suited him well!

The last week of term, Ellie finally gave up trying to make things work at the all girls school she has attended for 2 1/2 years with nearly as long a struggle. She chose to go the opposite direction to all her friends from our village and therefore lost all her friends at home. I pulled out all the stops and she started the new school 3 days before break-up. I always knew she wasn’t as happy as I thought she should be at the other school and on her first day at the new school, she came home with the biggest smile I’ve seen for over 2 years!

On Christmas Eve, Harry had an operation from which he has now recovered well. It did mean no swimming over the half term though which I’m sure he missed.

Although Christmas day was a recovery day for Harry, it was a lovely day with lots of presents for the kids.

Our Elf this year was Pippin who sent Harry a letter. Isabelle and Oliver sent a play guitar. Ellie had socks, diary, lipgloss, chocolate and a black purse from Elf Janine. Debbie sent a Woodie toy and a Christmas stocking. Tez sent a play mobile phone. Karen sent some eyeshadow and nail vanish to Ellie and Clara the Cat ‘feelie’ book to Harry. Our Hanna sent a toilet bag with nail varnish, lipgloss and shimmer to Ellie and a soft toy for Harry. Beddy Bear sent some ‘colour me in’ book marks, another touchie feelie book and flannel for Harry. We heard from Kim Ginger who was just as busy getting hitched in early January (big congrats). We had lovely mail from China, Sam and Jorday made some fab Christmas cards with lots of decorations on, Jane Fawcett sent mail, and our Fairy of Many Names sent for us all too. Claudia, Henry and Christian sent Harry Mr Tumble DVD, fountain pen, pencil case, notebook, nail varnish for Ellie. A Christmas jingle toy from Post Pals was received and lastly, a letter from Santa to Harry!

If anything or anyone is not mentioned, it is not intentional. Everything Harry and Ellie has been given is appreciated – in Ellie’s case much treasured and loved too. Harry doesn’t know to have such feelings as long as his toy rewards him with a song, a light or a noise, and if he can watch Mr Tumble on demand – Harry is the happiest boy in town! So grateful thanks to all who wanted to make a difference in our lives – you have!

The New Year came and went with Ellie’s first real party – Harry still recovering stayed at home cosy with me.

Then back to school for everyone for a few days before the big freeze. Harry’s school managed to stay open the first 3 bad days when hundreds of other schools chose to close, then on the last two days before the rain set in, Harry’s school closed.

In the same week, our little Jack Russell, whilst out for a walk with Ellie and the Mini Yorkshire Terrier, darted into the road and got hit by a car. He spent some time at the vets on drips etc and had some x-rays. We’ve just been allowed to take him home. Luckily, he is alive and well. Ellie was beside herself with worry and is of course elated all is well.

The American autism treatment program Son-Rise do a week’s course every January in London from the 25-29th which I am trying to get on. As I write this, I still do not know if I have managed to secure a grant for the $2500 fee but am awaiting a decision. If I am successful, I will attend this course so I can start pulling Harry out of his silent world and show him the power of speech.

I was once told he would not walk or hold his head up. Harry has long been walking and holding his head up too. But at 8, he still has his first word to come. Being a practical person, I wish for Harry to say ‘biscuit’ and ‘go outside’ or ‘Mr Tumble’ but I also know my ambition for Harry is greater than just 3 words. I’ll become ‘greedy’ and want him to say more should he achieve a few, as I became ‘greedy’ when he put his foot in front of the other and took one step – then I wanted two, then three, then a whole walk round our village. A walk became a run, it became a backwards walk. I know 3 words won’t be enough for me and I’ll want to spur him on more. Such is the power of speech in a vocal world where we never think of how powerful words are.

So, IF I get this course, a friend who’s done this with her girl already to great success, has said we need to raise 12k to go to America with Harry to take the next course and she is pushing me fairly hard to start fundraising for this. And after that, I’m sure there’ll only be another one.

Once I said if I could give Harry simple choice-making and quality of life, then I’d be happy. I’ve achieved that – anyone who has met Harry would agree to that. Now, I’ve got more ‘greedy’ for my mute boy with the most fetching smile in the world, who can always pull a funny face and make me laugh on the lowest day when laughter comes hard – there is no pride I cannot swallow because now I want for Harry to have more.

Update 28th November 2009

We’ve had a busy November with Ellie’s Pyjama Parade – raising funds for Post Pals. We took to the high street in pyjamas with our collection boxes on a very cold and blustery day! At the end of our day out, when dusk was falling, we had a candlelit procession carrying a picture of each of our Post Pal Memorial children – Daniel M’s family took part, and this was a moving moment in keeping their memory alive.

Give or take a few pennies (and believe me, there was a few!) we raised around £630. Thank you to those who sponsored us on, those who sent Ellie good wishes and congrats afterwards, but special thanks has got to go to Hanna, who has not only been writing to Ellie and Harry for ages now, but came down from Lancashire to take part! Hanna is a young lady who is overcoming her own struggles with ME – something many volunteers are dealing with whilst being involved in Post Pals. Not only did Hanna take time out from friends and college, she also raised a fantastic £33-55. Well done Hanna! Viks has asked me to do a write up about the day and I will do this for Viks to post on the Fundraising Page sometime soon.

A note came home from Harry’s school inviting parents to put themselves forward for 2 vacancies for Parent Governors. Considering my complaint with Social Care and Health in the very same matter – provision for Harry at school with Head not listening and effectively blocking my attempts in resolving my issues – well, this is an interesting opportunity indeed! Some parents from Harry’s school have already suggested that I go for it, and at this moment I am seriously considering it! I’ll let you know next update if I’ve decided to go for it – and next update should also include if I got it.

My complaint has now reached the school. Head has got the Deputy to deal with it – from this I must assume she continues to play her silly games. I’ve gone over the last Offstead Report, and funnily enough, the issues I raise are also in the recommendations Offstead have made…

I have also set in motion some follow up appointments for Harry. He’s now 8 and still doubly incontinent. I wonder if it’s worth exploring if there’s any reason for the incontinence or if there’s something we can do to help Harry lead a more independent life. During this, it has emerged that Harry needs a small operation to sort out a ‘male issue’ and to my joy, this is going to take place Christmas Eve. So, we shall spend Christmas Eve on the operating table. Hopefully, we can spend Christmas day by the dinner table!

Harry has had mail from Beddy Bear, from Grace and clan, from Tina and Molly, a really super card from Cokryn (hope I’ve spelt this right), from Margret across the big ocean and of course from our Hanna. A super-cool mobile, a magic painting book and a ‘Teddy’ story book were also sent to Harry. Our Fairy of Many Names sent mail to Ellie. We too lit a candle at dusk on the Parade Day and sent you good wishes, hoping you’ll get better soon. Sarah sponsored Ellie – thank you so much! And thank you to all who wished Ellie well on the fundraiser.

We’ve done two fundraising events for Post Pals now. The first one ‘On wheels for Post Pals’ and now the licensed ‘Pyjamas Parade’. Our involvement with Post Pals has always been an active one – I remember in the early days, I would chat with Viks via email loads. Then we had a time when Harry needed us with his epilepsy, then his keto diet, and then we needed to raise funds for a variety of equipment for him. Then we had lots of issues with Social Care and Health for respite and other things. We no longer live life in the ‘fast lane’ so to speak on making life the best we can for Harry. The things we face now are different – improving provision at school, enabling Harry to do more independently. Viks often reminds me of the time Harry couldn’t walk and how much I worked with him to improve his walking. Now Harry does so many things for himself – things I was once told, he would never do.

I am at a crossroad in a sense of where to take my involvement with Post Pals. I still feel, and so does Ellie quite strongly, that we want to do another. But not in cold November! We’re toying with the idea of hiring the village hall and arrange a themed night with live music and bbq for next September. In the meantime, I’ve offered Viks to help others out with their own fundraising – and this new idea is being worked on.

Facebook seems to be the networking site for Post Pals at the moment. If you are interested in raising awareness for Post Pals, and indeed some money too, please contact me there – or here, if you prefer.

The preparation for Christmas is now next on the program. We shall put the lights up this week – Ellie loves the outdoor lights we got last year, so they’ll have to go up again. And then off course, the TREE! The best of all!

So, I wish everyone a stress free December and I hope everyone enjoys the build up to Christmas!

Update 9th November 2009

I’m trying to decide if there is a ‘greatness over my continued lateness’ as those of you who’ve been following us a while, may have noticed I rarely submit feedback late. I think my ‘greatness’ isn’t so great really… BUT it’s all in the name of CHARITY! I have not had time to go to my beloved gym for about 6 weeks now which makes the membership fee somewhat wasted! Again, all in the name of CHARITY!

I’m sure you are aware that Ellie is doing another fundraiser for Post Pals! So, I’ve been up to no mischief – I can assure you – but doing all the background work for Ellie’s Pyjamas Parade to become a success! Last year Ellie and friends rollerbladed 3 1/2 miles but I’m nearly convinced we’ve totally lost the plot this year because we’re all staying in pyjamas ALL DAY in PUBLIC in Stafford! Totally barmy if anyone asks me!

I have managed to secure a super prize for Top Adult Collector – so the competition is hotting up amongst friends, which is great for Post Pals!

We have an online appeal where donations can be left – should anyone reading this feel they’d like to! We’ve only got ten pounds as I write this…

October brought the usual frights and scares and Sami’s little bag of tricks were great at getting us into the spirit! A super card too! Erica from USA sent a brilliant pumpkin card, thank you. Beddy Bear has been busy sending Harry 2 cards, also 2 cards to Harry from our Hanna and to Ellie too, but Sarah G has been busiest of all with both letter and 3 cards! The coolest scare card from Maria and Michael – thank you both, we love the card! And Tam from Tokyo sent the cutest card! Our Fairy of Many Names is still sending occasional mail which is lovely – Post Pals just wouldn’t be the same without you!

The situation at Harry’s school seems to go from bad to worse. The Head has now ‘declined’ my help with RDA until I ‘demonstrate more willingness in addressing issues’ whatever that means. So, I have willingly gone ahead in ‘addressing issues’ by going to top of Social Care and Health enquiring to the whereabouts of their ‘transparency’ and ‘every child matters’ policy. Because I think they must have mislaid it… That resulted almost immediately in a meeting with a Commissioner for Parents who’ve noted my concerns and is putting this forward to the right Head of Department (so confusing in Social Care and Health!) and who thinks my views are valid enough to invite me to join a panel of parents to produce a ‘parental toolkit for services that work with children and young people’. So, I have joined this ‘action’ group and I’m really looking forward to the first meeting.

Now I just await the action on my concerns for Harry and it will be exciting to see at which point Head realises keeping parents at the locked front door, is not the best idea… And don’t the experts say that we parents ARE the experts in our own children? I wonder if it’s not time someone told our Head this so she can feel less threatened by us parents (I’m by far not on my own in concerns regarding the same school).

I’ll keep you posted on developments on this, but for now, I must return to the efforts of CHARITY FUNDRAISING so Post Pals can continue sending mail to all the kids.

Update 29th September 2009

I noticed Harry toe walking again this summer. This means he walks mainly on his toes as opposed to on the whole of the foot. This indicates a tightening of the calf muscle which points back to OT, riding and special shoes.

This is a step back for Harry as he’s already spent 3-4 years in special shoes and was assessed to have overcome his low muscle tone and tightening muscles. Harry has been doing the RDA (riding for disabled) since he was about 3 years, but when he went into Year 3 in 2008, the Headteacher decided Harry wasn’t ‘needing’ riding enough to continue. During the one year he has NOT been riding, he is now back to same issues as before – so I dare say, he DID need RDA. I’ve now had him assessed properly – he is back in prescription shoes – and I’m pleased to say, he is also now back enjoying the RDA. I have managed to make myself quite un-popular with the Head by insisting Harry’s need for continued riding (this is with OT support) but with so many other things I’ve had to fight for Harry so far, I’m not that bothered if I upset someone who is supposed to offer Harry services that will improve his quality of life when they think they know better and decide for him without asking.

Harry needs a voice because he hasn’t got one. So, I must be that voice no matter how much of a nuisance the ‘professionals’ deem me to be.

And I will let things go on for so long without saying anything. But at some point, I realise my naive hope of things improving is just that… Naive! Then I begin to make waves to give everyone the opportunity to instigate things for Harry. When they don’t happen – I speak up. So, I’ve now volunteered to help out with riding – passed the CRB check – and am ready to go! And now I sit back watching Head squirm at the prospect of opening the doors for me to have access to observe knowing full well, the failings I see WILL be acted upon in my quest for being that voice Harry needs. Staff cuts and other resource issues mean the school is cutting back on the hands-on help Harry needs to function. Harry is ‘profoundly learning disabled’ and is statemented ‘high dependency’ which means he needs someone pretty much all the time to help him access curriculum and activities not to mention his hygiene dependency. And the more I witness the help NOT being provided, the more I have to be Harry’s voice. So, I predict this year to be a turbulent one!

But onwards and upwards is the only way to better things for Harry – without this we’d never have come as far as we have with him.

Otherwise, Harry is happy to be back at school. It’s a nice little class he’s in with familiar faces. He enjoyed a trip out on a barge recently and has a few more outings lined up before the onset of colder days.

Ellie too is settled back into the school routine – she’s now Year 9 – and the homework burden is much increased. She is finally seeing the last of her Year 8 issues in school and, dare I say it, this year looks promising for her. I hope all her efforts and hard work pay off!

Ellie has decided to do another fundraiser for Post Pals! In 2008 she went ‘On Wheels for PP’ with her mates and raised a staggering £810! This year, it’s Pyjamas Parade up Stafford High Street on November 14th. Please look at the web appeal and be so kind to forward it to all your friends! Stick it on Facebook too if you use that!

So, if you’re free on November 14th and around the Stafford area – STAY IN YOUR PJ’s ALL DAY AND JOIN US!!

We are quietly hoping to raise £1000.00!! Just think how many smiles we can send with that!!

Ellie has also put Post Pals forward as her House Charity at school again. She did last year but was beaten by an appeal for an African village. I agree, Africa does need support BUT I also think we can forget about our own sometimes which is why we raise for PP.

Ellie went to meet Fearne Cotton, patron of Post Pals, to record an interview with both Fearne and Vikki, our Post Pals founder! Not only was Ellie hugely excited but she also took this recording to school and showed everyone in an assembly she held for the whole school! Brave little girl! And, she was so chuffed when the pupils voted and the House Charity of 2009-10 is a share between Post Pals and Teenage Cancer! Well done!!

We’ve had loads of post this time! Our Sarah has sent snail mail with fish, fab origami, pigs and geese too! Kim, Sami and Kate Dee have sent mail too – Maria and Michael, Isabell from Utah and off course, our Hanna.

The last September days mean getting the garden and plants ready for winter. Although winter has its highlights too with Halloween shortly, then the hot chocolate and dvd nights, in our house we’re still sad summer is coming to an end. Even the dogs take to snuggling up most of the day and only reluctantly go outside to ‘do the necessary’!

My days at the moment are filled with background work for Ellie’s Pyjamas Parade which makes me wonder if I should get Vikki to offer an opening for Event Organiser! LOL! I’ve even had to skip my gym for the last few weeks as I’ve had so much to do with all this! But I must admit I really enjoy it! We will try to get the Parade mentioned in the Press so we get it spread the Post Pals word, so if anyone reading this is connected with media who’d mention this, please get in touch!

Update 30th August 2009

The summer holidays are always hectic and that is why I wasn’t able to update for July – sorry!

The wettest July since 1888 – what a way to spend the predicted BBQ summer! Difficult to entertain children, long faces and boredom – but not the case for us! We had a busy program for Harry and Ellie jet-setted off to relations in Germany for a farm holiday and then to join them in school.

Then we’ve had loads of lovely post from Hannah in Cornwall, Annie sent a snail jigsaw, Kim a flying dog, Amy sent hugs to Ellie, Sarah a pair of ducks, and I wonder if Harry has stolen 3 hearts from UTAH in USA because really lovely animal cards came from Dakota, Baily and Maxine! Our Hanna also sent mail and Ellie says she’ll write back this week but she’s still unpacking!

Ellie wants to do another fundraiser for Post Pals – this time, we’ll walk down our high street in PJ’s if all goes to plan. We have also asked Post Pals Patron, Fearne, to meet with us so Ellie and Megan (she came to the Post Pals BBQ) can interview Fearne and take a recording to their school and really spread the Post Pals word! The girls are hoping that will help in choosing Charity of the Year for their school and raise even more funds! For ME, it means a weekly supply of cakes for the cake stall!

So, we’ve got a couple of hectic months ahead with all the planning. Hopefully, when I next update I will be able to have more details, so those who want to join us in PJ’s can – we’re in the Stafford area and Viks has told me that the Midlands have the most Pals, so it would be great to see some there!

Update 8th July 2009

June is Harry’s birthday and Postman Pat was weighed down with Pal Mail for Harry! Thank you to Sarah Gilligan, Tina for both cards, Jenny Orpwood, Debbie, Tracy from Bristol who also sent musical instruments and the coolest toy mobile, Maria and Michael, Despina from USA, Mowgli and Baloo from USA too, our Karen (Sami) and by no means least from our Hanna! We were made up with the audio CD for the car journeys, the sticker book (not sure who enjoyed that more…) the coloring set and the felt set for Harry, not to mention the cutest lemur! Ellie was so pleased with her mug and ted, and Harry with the jigsaw you brought back from your holidays! Glad you had a nice time! El has had activities week and is now in the last 2 weeks before summer holidays – and in true style school is giving them so much work. She says she’ll write to you ASAP!

Not a lot else really happened for Harry in June, except for a weeks respite in Portugal and the odd day that was nice enough to get the pool out.

As I’m writing feedback suitably late, we have now been to the Post Pals annual BBQ which we really enjoyed! Thanks again to Viks, her parents and helpers for all the effort. Special thanks to Jan for lending the venue! We brought Megan with us this time, and a new supporter of PP is now enlisted! Ellie and Meg are planning Fundraiser No. 2 with a little adult help!

I am hoping to have some more details within a month or two and will this time write more here so we reach more of you! Ellie did so well last time (£810) and we’d like to at least match it! Ellie and Meg are talking about a Fun Day in our area, probably Newport (Shropshire), and it would be SO great to have some of the Pals there too! So, watch this space!

Update 6th June 2009

We have just returned from our annual respite break in the Med – was just as good as it sounds! Harry’s swimming is getting much better and he is enjoying a degree of independence now – still closely supervised but less directly hands on. He also enjoys a little longer in the pool as opposed to the maximum 20 minutes it used to be. As he is approaching 8 years of age and so far never really had a tan because he’s been covered with sunblock, this time I felt he could ‘downgrade’ to sunfactor 30 and block on his head and other vulnerable bits. Consequently, Harry has a little tan this time and has grown an army of freckles!

Ellie and I had some time to ourselves which I think was greatly needed. Since joining highschool, time for Ellie has been different, with much more homework and less free time. So, she enjoyed the break too. And inbetween my mummy duties with and for the children, I too found a little chill time. So all in all, the break was good for us all.

Our Fairy of many Names has been in touch again – a lovely card to Ellie and we do hope you’ll make it to the BBQ in July! Just like we very much hope to see our Karen again! Inbetween Karen’s travels there’s usually a picture postcard to us so we can keep track of the jetsetting sightseeing journeys Karen has! Kim Ginger and clan have been busy again, Tracey from Bristol sent catty cards, a ted from Melanie Stirling, and some very good art cards from our Viks. Debbie Grey sent some great picture blocks that Harry likes, a beautiful card from Heather in Idaho and the one card that stole our hearts was of a beautiful lady with sad eyes sent from a ‘fellow’ sister which made us both understand, wonder and feel strength from your words. Hanna has sent lovely cards to Ellie too.

As the rain set in after days of sunshine, shorts, t-shirts and swimwear, we dug the umbrella back out and must admit to wondering why we bothered getting the return flights. Having established some less chaotic order in the house, unpacked the seemingly endless amounts of washing that looked nothing like that mountain when it went in the suitcases but seems to have grown inexplicably, the promise of lambchops with mintsauce is simmering on the stove reminding us all THIS kind of grub is just not the same in the Med! Nor is the joy from being a member of our exclusive club and the network of people that keep us going through the not so good times. Without which we would be emptier. So, having caught that return flight and got the umbrella back out, we just hope July 4th will be dry so we dont have to paddle to the queue for the burgers! We really can’t wait to see you all again!

Update 7th May 2009

Easter Holidays, half term and birthday party – all in one month! Followed promptly by major hard drive problems so I’m behind in my ‘Thank you’s’ and updates!

We have had cards for both Easter and Ellie’s birthday – in fact so many that individual thank you’s become difficult. None mentioned and none forgotten – many thanks all round! Hanna, please can you send your address again via email through Post Pals as it was lost in pc disaster and El’s got a letter here for you.

Update 1st April 2009

March traditionally means Spring Cleaning, setting seeds for garden flowers and tomatoes, tidying the shed from months of dumping things quickly as it’s too cold to tidy properly, watching the early spring daffodils bloom, the final attempt of winter before spring inevitably wins and feeding the birds extra who struggle finding much from the ground. March is also the farewell to wintertime and the extra hour gives the impression summer is really here!

Harry had an eye infection – possibly from eczema on hands, then rubbing his eyes, so a trip to the GP’s gave ointments, creams and potions to tackle it all. I think Harry found it all very traumatising and although infection is now gone, it seems certain actions trigger the unpleasant memory of ointment in his eyes.

We’ve spent some glorious afternoons in the garden and it’s a real joy to see Harry actually playing, seeking the next entertainment and knowing what to do with the different activities on offer in our garden. This was something I would never have dared to hope for never mind expect!

We’ve not seen the specialist since last Summer – I am still slowly getting used to life without the Keto diet and I so enjoy watching Harry eating a whole icecream!

This month Sarah Gilligan sent a little poem for Mother’s Day – thank you very much! Tez sent Harry a fab bouncing crow – when we send it flying, Harry giggles! Thank you Tez. Our Fairy of Many Names has been in touch too with Ellie – nice to see you’ve not forgotten us. Post Pals sent Harry a gorgeous Teddy who now co-lives in Harry’s big bed! And plenty of mail from Hanna – Ellie says she’s sorry she’s not written but they’re so busy at school, she’ll write in the half term. It seems Kim Ginger has nearly involved her whole village as Harry received finger puppets made by people attending a craft afternoon! They’re great! Finger puppets are easy to make pretend play with, an elementary stepping stone in speech as it demonstrates ‘turn taking’ which speech is made up of – we’ve been playing with them for Harry. Not quite sure what he really thinks of them but like the drumming and turn taking, I guess the ‘penny will drop’ eventually so we persevere!

Harry continues to take Omega 3 and one tub of blueberries (research shows good results in repairing brain damage) per day, as recommended, and he observes us making words through new eyes. He is trying to repeat the word ‘Baby’ and has a ‘bebe’ sound distinctively different from any other sounds he makes, so we think that is Harry’s version of ‘baby’ – we patiently try to include other words and maybe, just maybe…

We’re looking forward to the Easter Holidays – Ellie is turning Teenager (HELP!!!) on Easter Sunday so the Easter Bunny will have to compete with the birthday celebrations!

Wishing everyone a lovely April – Happy Easter too and hopefully the weather will be great for enjoying the outdoors!

Update 28th February 2009

February – the month of intrigue and secrecy! Oh yes, Valentines Day! Both Ellie and Harry had 2 cards each – they kept Ellie guessing for ages! So, thanks goes to ‘Sx’ and ‘?’!

Then Kim sent some lovely cards and we had the best stamp I’ve seen for ages was ‘Little My’ from the Moomins all the way from Riina in Finland 🙂 I remember watching the Moomins as a child in Denmark as I was growing up, and loved the adventures they got up to – not sure how big the Moomins really ever were in England but to me it was a step back to my childhood!

Ellie had a busy week skiing in Wagrain, Austria and got pretty good at it. Having never been skiing before, she was quite chuffed coming an overall number 3 on the very last race of about 60! She came home in one piece with a medal and certificate and other goodies. Thanks to Viks for the lovely card she had sent as a ‘Welcome home’.

Harry has now lost both his front teeth – hehe! The first 2 he lost got swallowed but the 3rd one got spat out which I was really pleased about so I could make the Toothfairy flutter by! The toothfairy came to Ellie without fail and she was a little suspect that the same didn’t happen to Harry so I explained she won’t come without ‘proof’.

I keep being prompted by Harry’s school to try to establish a parent group as so many parents struggle alone. We are in the early stages of setting up a ‘Skill Share’ for parents, carers etc, to try and see if we can be a support to each other or if we could put our achieved skills to some use or other.

Nothing much is new on the Harry front. He is being assessed for a new wheelchair with the usual months wait. Otherwise, Harry is just Harry – mostly happy and chilled enjoying school. Now the weather is less freezing and more ‘outdoor’ inviting, we spend more time going for walks or visiting places where we can enjoy the outdoors too.

Update 10th February 2009

We are at the end of a very cold spell that even saw snow with snowball fights, snowmen on most street corners, and a great opportunity to dig out the winter warmers! Hopefully the frost has been around long enough to kill off all the bacteria lurking about trying to find a victim for a bad spout of cold or runny nose!

It’s been a very quiet post month this time with most of our mail coming from our Hanna – thank you! Gaynor sent some fab glowsticks that we’ve been playing with during the evenings – Harry tracing the patterns in the air and being quite fascinated! Thank you again to Viks for the lovely blanket – Harry’s new favourite.

Harry is still enjoying good progress and we’re concentrating now on finer motor skills like drawing and picking up smaller things. We’re moving onto self help skills – even the task of washing hands and face as well as helping putting clothes on and off. We are also working on speech. We’re not directly trying to make Harry speak, although it would be lovely and that is the overall aim, but before actual speech is the understanding of ‘turn taking’ so we do lots of things in taking turns – like drumming, which Harry really loves!

For all Ellie’s efforts in raising £810 for Post Pals in October, she received a BBC Blue Peter Badge – much to her pride! Thank you to Viks for doing the necessary!

Ellie is off to Austria on a school ski trip this half term and she can’t wait! It’ll be a quiet week with only Harry and me but I’m sure we’ll spend half our time in the local pool and the other building brick towers that Harry is really into now!

I shall also be edging another year mark in my seemingly endless line of birthdays – however after about 21 it often becomes a non-event!

We hope you’re all making the most of the snow with as little inconvenience and disruption as possible – we’re counting the days for spring and the promise of summer!

Update 5th January 2009

It’s early January 2009 with the festive season just behind us. December started out so well – being organized and prepared. We were meant to go to see Santa in Harrods with a friend who helped so much in Ellie’s fundraiser for Post Pals back in October but this was not meant to be. With the death of my Father in early December and subsequent funeral, all my plans were thrown a bit.

Harry’s last day at school was also not quite to plan as the heating had broken, so when he arrived it was only to turn back home and start the Christmas holidays early.

AnnMarie was our Reindeer this year – thank you very much for all the love and care you put into your cards! Post Pals sent Harry 2 glow sticks, Debbie sent some play doh, Julie Barrett remembered Harry’s fondness for musical ted’s and sent a great ‘Rise’n’Melt Snowman that has given us all endless fun! Our little Hanna sent Harry a super speed bike that makes Harry giggle when it zooms round – thank you Hanna – I’d like to send a proper card but don’t have an address. The youngest Elf must be Jared (aged 2) who sent Harry a Push’n’Go Tractor, a water snake, crazy bubble buster, play doh, toy car and a musical book! I dare say Mum Sarah helped Jared just a little bit 😉 but kind thanks all round!

I know strictly speaking its Harry who is the ‘member’ of Post Pals but I dare say Ellie has stolen the hearts of one of two Post Pals helpers! Post Pals sent Ellie a little something, Julie B didn’t forget Ellie either when sending to Harry, Debbie ensured Ellie was busy for hours and keeps popping back to track development and I’m sure you know exactly what I mean! Debbie, Ellie has made you a card but we have no address – could you please let us have one? Our faithful Fairy of Many Names didn’t forget our Ell either and our thoughts went your way several times – you know why. But most of all, I dare say ‘Santa’s Elf’ has really took Ellie to heart – as we you. You sent Ellie some girlie stuff and really lovely things too.

We received cards from Elizabeth and Jack, Despina from USA, Maria and Michael, Sarah, Julie B, Helen T, Kate Dee, Leila, Debbie, Debbie Robinson with a great card calendar, Jared, the most beautiful folding card from Annue and James, our Karen and lastly our little Hanna.

Viks must have a mention too as she must have spent hours between being poorly still, preparing cards etc for both Harry and Ellie, thanks Viks.

As I round off another Christmas and cast my glance to the new beginnings of the New Year, all that remains is to humbly thank everyone who makes time and effort to share their joy with us and allow us to be a little part of their lives. Post Pals has become such a big part of our lives and has given us such belonging – I now can’t imagine life without!

Update 5th December 2008

November came and went fairly uneventfully. We tried to collect outstanding pledges from Ellie’s Post Pals Fundraiser in October but we’ve now settled on £810 being the final amount Ellie and her friends managed to raise! There is still a couple who keep saying they have collected but keep ‘forgetting’ to bring in which is such a shame for the smiles that cannot be sent now. But we have to draw the line somewhere. I cannot begin to thank everyone enough in your fab support of Ellie – the cards for good luck and the well done ones after!

Harry enjoyed going back to school after the October half term. The Christmas preparations have started in earnest now with the annual Christmas play taking place next week, where he will be an Egyptian prince in the schools adaptation of the nativity play.

We got the Christmas decorations up for December 1st, with outside lights too as Ellie had wished for these for a long time. So we now sit and enjoy the lights in an evening with Harry leaving the decorations in peace this year! Maybe I shouldn’t tempt fate by saying this, as in previous years by the time Christmas comes Harry has halved the decor from when it was put up!

Debbie Robinson sent a fab calendar card that now adorns our festive display. We have cards from Maria Carney and Despina Ropa too, cute kittens and puppy from our Hanna with lots and lots of smilies, our Fairy of Many Names seems to have a finger in every pie (you know what I mean!), a brilliant Reindeer letter sent via George! Congrats on your baptism! And last but by no means least thanks to our little circle of faithfuls, Karen for updating us on France and fab cards!

Update 2nd November 2008

The spookiness of October! Knocking doors, giving folk a fright! What a great night Halloween is! Ghosts and witches, pranks and laughs – Ellie looked forward to the annual pumpkin decoration and getting dressed up. Hanna sent Harry some great spooky bubbles (and as Harry can’t blow) Ellie used them as trick in the ‘Trick or Treat’ so when someone dared to say ‘trick’ they got bubbles blown over them! I think we blew more bubbles over Harry though as he laughs trying to catch them!

October was also the host of Ellie’s sponsored Rollerblade run. After we met at the Post Pals BBQ in the summer, Ellie was rather taken in by the whole Post Pals concept and the huge effort that goes into ‘brightening a kids day’ and she wanted to give something back to Post Pals as they’ve so many times brightened our lives with our struggles with Harry.

Ellie had long since decided she wanted to rollerblade from our village to the next which is about 2.5 miles. Her mates from school wanted to join in as well as her mates from Newport Girls Football Club that she plays for.

We arranged for Staffordshire Police to give the girls a ‘Blues and Two’s’ Escort rounded up at the back with a Paramedic in an ambulance – just in case someone should go flying on the road – but no accidents luckily!

The procession ended up at the Boat Inn in Gnosall who kindly let us have a BBQ there which Julie and Damian were able to chef with kind donations of burgers and sausages from the Family Butchers in Gnosall. Refreshments for the girls were provided by The Bakery who also gave a bag of sweets to them all!

Vikki directed the press releases for Ellie’s event and we saw her in print in different papers! Blue Peter here we come!

In both donations and sponsorship, we hope the final will be close to the estimated £700 but we are still collecting. We have made an appeal on with a £50 target but we’re still a bit short so please donate a little if you can afford it! Such a great cause!

Fergal Hayes, Kim Bows, St Matthews Sunday School and Karen (Sami) all kindly sent something along with both Ellie’s and Harry’s schools each collecting. The Taxi staff, old (Barbara and Colin) and new (Jackie, Stephen, Charl) that take Harry to school also joined in as well as door to door collections in both our village and the one we ended up in on the rollerblade run. Other girls taking part individually got sponsored too. We got all the participants a Post Pal t-shirt printed so they could keep it as reminder with a certificate of completion which was kindly sponsored by George Yeoman – builder from Gnosall.

Many, many, thanks all round – we felt we were so successful we might well do it again next year – lets see!

The half term is drawing to an end, it just goes so quick! We’ve had a lovely week off even if the weather is both cold and wet. Thank you to all the ones who sent Ellie good wishes, belated birthday wishes to our Fairy of Many Names, and many thanks too for all the usual mail. Hope you’re back from a nice holiday in France Karen!

Update 8th October 2008

September means back to school and no more lazy days – we’re full on back into the swing of hectic days with lots of homework for Ellie!

Harry is now totally off the ketogenic diet, 4 1/2 years of strict food regime and we’re adjusting to a free choice of meals! We’ve found Harry is rather partial for a cake when he comes back from school! We’re also experimenting with a range of foods previously not allowed for Harry. The first few weeks were as hard as when first on the diet as Harry point blank would refuse some foods because of the look – he just refused to open his mouth! But as time goes on Harry is more open-minded to different foods.

Harry’s last ever fit was in 2004 when he had corrective eye surgery. Since then, we have had follow-up appointments to track progress with eyes. First 3 monthly, then 6 monthly and the last 2 years have just been annually. I took Harry again this week, and now they suggest Harry is discharged all together! Although Harry will never be completely free of the damage from the childhood epilepsy and he is ‘profoundly learning disabled’ it is still strange to have parts of Harry perfectly normal.  I slowly see the tight schedule of appointments for this and that reducing, and feel a little scared of the normality of it all with the reduced specialist network I have come to both rely upon and seek assurance from.

After meeting Post Pals in the summer at Vikki’s BBQ, Ellie was really touched by the effort Vikki puts into Post Pals and her personal struggles to balance being poorly with the work of Post Pals. Ellie said a while back she would like to raise funds for Post Pals and we’re now at the stage of being able to do so!

October 19th 2008 is the day when Ellie and a bunch of friends will do ‘On Wheels 4 Post Pals’ fundraising event by using any wheels (bike, rollerblades, scooter etc) to travel from one village to another escorted by Staffordshire Police with flashing lights! Ellie is now busy seeking sponsors and donations in preparation – Mum is very busy trying to coordinate it all!

If you feel you would like to sponsor Ellie for the 2 1/2 mile ‘On Wheels 4 PostPals’ – Ellie will be on rollerblades – then please send your donation to Harry G’s usual address. If you send by cheque, then please make it payable to Post Pals but send it to us so we can tally the total and know how much Ellie has raised!

It’s been a quiet Postie Month but our round of thank you’s include Karen holidaying in France, Kate Dee, Hanna, Linda B and Marianne from Finland!

Update 30th August 2008

Well, it’s official now! Harry is OFF the diet after nearly 5 years! It’s a whole new food-world ‘out there’ and there are so many things to try out! Harry won’t remember food before the diet and he’s totally forgotten how he used to love nothing more than a buttered slice of toast with a hot drink before bed! Now he won’t touch toast or bread! I am learning that Harry likes his meals best if they look like ‘they’re supposed to’ and he is finding new tastes, looks and textures difficult – so small changes at any one time! The first few meals were very difficult for me to prepare and give Harry – I guess I was expecting seizures. It was difficult NOT to weigh the foods that i have had to weigh down to the 0.1 of a gram for nearly 5 years! Eating out is not going to be acceptable for Harry either, at least not yet. We’ve had one or two days out and tried to order something of a menu – but he’s not daft!

After our Devon holiday, Ellie went to Denmark with her Nan and then she went to Germany to our relatives to learn the lingo and go to school. She’s back now – I don’t know how much German she’s really learnt but she has mastered a fair few ‘undesirables’…

The nicest card arrived today from the Post Pals team saying ‘No more keto food’ for Harry! I don’t know how you make those cards but they’re brill! Karen sent some beautifully made art cards – have a good trip to France 🙂 and Ellie says she will do a sponsored rollerblade run from our village to the next (about 3 miles)! She will arrange it when school is back as she’s hoping her mates will join in! Hanna sent a cool tiger postcard from the zoo, Rufus and Sheila sent a card too, and a frog card from Hayley – how did you know my favourite animal is a frog? I love the sound they make! Ellie had some mail too and she would have liked to write back to Jennifer Castle and Eleanor from Scotland – but there’s no return mail – thank you very much anyway! Marie sent a lovely card too. To Kat – Ellie has just dropped a letter in the postbox for you, hopefully you’ll get it before school! We got lovely fairy mail from our special ‘fairy of many names’ – as always! We’re thinking of you especially at the moment.

Now the only remaining August thing is to get ready for school and nobody in this house wants the holidays to end… We’re hoping to squeeze a trip to Thorpe Park in before, so here’s for the weather! Hope you’ve all had a lovely summer, although I heard it was the wettest summer since 1912 – not that I can remember! Until next time – lots of love from us all xxx

Update 8th August 2008

July saw some important dates for us being involved with Post Pals – namely the first ever BBQ at Viks! It was fantastic to meet all the ones who braved the distances and put themselves out so much (Vikki’s Mom and Dad especially who opened their home). It was really nice to put a faces to the emails and pictures! And hopefully Vikki will take the hint and make this an annual event so we get as many as possible involved – sponsors, volunteers etc!

July also saw the schools break up and in our house that means no more getting out of bed for a certain time – we can laze about all morning if we wish! Not that we’ve had much opportunity as we went to Devon for a week in a caravan with Harry. During this time we arranged to meet up with St Matthew’s Sunday School – thank you for sparing us your time, it was lovely to meet with you!

We enjoyed our time in Devon, although it was too hilly for Harry to really enjoy, but he certainly enjoyed the outdoor pool and when it rained we just went inside so he was quite happy!

We have our usual round of thanks this time for cards and little surprises 🙂 and we’re by no means forgetting our faithful fairy of many names.

We also have some great news – HARRY IS OFF THE KETOGENIC DIET! Still no fits or even twitches! He seems much more responsive and listens so well, bless! It is still early days, today is only the 4th day on normal food, but so far so good! I am in close contact with the dietician and between us we share an amazement of the power of food as it seems to have stopped Harry’s fits. He is still left with autism and a huge amount of brain damage – those of you who met Harry at the BBQ will understand much better – and still no speech, but we just can’t give up trying to teach Harry things.

Enjoy the rest of the summer holidays before they all too soon come to an end!

Update 1st July 2008

June saw Harry turn 7 years old and we got lots of cards! We received them from The Post Pals Team, St Matthews Sunday School in Torquay, Julie in Beer, a super dolphin card from Sarah in the Brownies, Maria in Durham, Grace and Linus, Elizabeth and Jack, Helen F, Linda B and Kew Gardens and Despina in San Franscisco. Karen sent a super bird and star shaped tambourine, Hanna sent colouring pens and finger puppets, Helen sent a dog in his car from John – and no month would be complete without our Fairy of Many Names. Ellie has written to John and Abbie but then realized we have nowhere to send it to!

Harry enjoyed Sports Day at school where he came an overall 2nd and got a Silver Medal! School is slowly winding down for the summer holidays and they have more excursion days and other things on the program to make most use of the lovely days.

Harry continues to do really well on weaning off the diet. We steadily increase the carbohydrates and reduce the fats so slowly his meals are beginning to somewhat resemble more normal foods! We are to introduce Harry to rice, spaghetti, toast and the like but early interest in toast is fleeting to say the least! I offer, Harry sticks his tongue out to have a quick taste and then shuts his mouth firmly! For a while now, Harry has enjoyed Vanilla Cornetto Ice Cones and I’ve removed the nuts before giving it to him. He would eat the ice cream but not the cone nor the chocolate in the bottom. Last week he began nibbling at the cone and has decided it is both ok and enjoyable! His ketones are maybe beginning to show a reduction but there is no sign of seizures!

Harry still receives 1:1 support at school but I would estimate with 4 years of seizure free that this support will begin to be reduced as his needs are less. His neurologist is also preparing me for life without neurology and diets – so I guess the day is coming when Harry will be discharged from these and will be managed by the local paediatrics. But there is still much work to do in improving Harry’s abilities. He still has no speech although we work hard on this now with the much better program from Speech and I am slowly beginning to look at autism and ways to handle, cope and improve. I am considering the Son-Rise Program, US based and very intensive. It has good reports and results.

We are really looking forward to the Post Pals BBQ which will be the start of the summer holidays for us. We then go to Torquay for a week hoping to visit Brainwave who gave me endless knowledge and support in the early days of struggle. If St Matthews Day School would like a visit, please get in touch as we’re not far from you in the second week of the summer holidays.

Update 3rd June 2008

We’ve just returned from a respite week in Portugal – sun, sea and water parks! Both Harry and Ellie had a lovely time! I finally solved the problem of Harry using nappies still but knowing he’d want to go swimming on holiday! For anyone with the same problem needing nappy proof swimwear, try visit who have all sorts of things you can’t find anywhere else and I can vouch for the swim shorts that did what ‘it said on the tin’!

Ellie had mock exams before the half term and was really looking forward to a chill week. Going to high school is not as exciting as it appears in primary school…

Harry is doing well on liberalizing his diet. Still no fits – it’s been over 4 years now! But Education have now stated as his 1:1 extra funding was facilitated due to the danger to himself from his seizures, they will re-look the need next time his Statement is due, as he is now seizure free. I am beginning to expect that will mean Harry no longer qualifies for this. There are so many improvements with Harry – of which I am endlessly relieved of course, but there is still a long way to go. His autism is now being looked at in more detail combined with extra speech input so that will be the new area of effort for us all.

It’s been a quiet posty month – guess that’ll change with Harry’s birthday on June 13th! Our round of thanks though goes to Helen who has sent Harry more fab tapes, Abbie and of course Kate.

Update 30th April 2008

April has seen the last attempt of winter, but it looks like spring is winning at last! Harry is enjoying more time outside and being swung patiently on his new swing. We have tried one or two different designs but have given up the more modern steel tube ones for the more traditional wood, as this is much stronger and Harry can swing without the frame coming out of the ground!

April also saw Ellie turning 12 in Pizza Hut style and a swim party too. She had a great day with lots of presents from our Post Pals friends to whom we extend our gratitude. The round of thank you’s include our ever faithful Kate Dee, Karen for the growing friends, John for his cool facts that make us laugh, some super playdough and a super fast car from Hanna, a new friendship from Abbie to Ellie as well as a beautiful card from Kat M to Ellie – your card is on Ellie’s desk, not sure if she has written to you yet as she’s drowning in homework and end of term exams but your hometown isn’t far from ours 🙂 and lastly, our love goes to Linda B from Torcross too.

Harry is making some progress with the new intensive interaction as per speech assessment at school. He has been given some signs to work with and has taken a liking to the one meaning ‘Register’ and the taking of the register up to the office. He manages this now with minimal help and received ‘Pupil of the Week’ for his hard work. School insists he is making lots of different sounds and some new gestures too – I experience a lesser success rate at home but am assured this is normal. However, I have taken Harry to town twice now without using the wheelchair. We didn’t shop around all day or anything, but had a small planned walk and he did this fine! We have to stop to sit down every now and then but this is still very good!

We are on a respite break at the end of May and are hugely look forward to this! We haven’t had a week off for a year now and so much has happened with Ellie going up to high school and Harry too.

On a final note, so many have told me for years to write Harry’s story and make a book. Well, I did listen and I’ve mulled it over now for ages and thank you for your faith in me – yes I will write Harry’s story. So, if you know of anyone daft enough to publish it, please let me know! I’ve made a start and a friend has read what there is so far and I feel confident to carry on, but as to finding a publisher! I’m in the dark here so any help is very welcome and appreciated!

Update 2nd April 2008

There’s still no news on the respite. We have had one very detailed report by an independent person put together on our caring for Harry with hour by hour account of how Harry’s disability affects our lives. Then we had another report by local Health, but by no means as in depth or thorough, but more an insight into our lives. And another month has ticked by without a decision of whether they will or will not reduce the help we receive…

It’s been a nice month though with the promise of spring after a last attempt by Mr Frost to make it bitterly cold and windy! With the turn of the clocks, the temperature also rose enough to not have to wear hats, scarves and gloves in an attempt to avoid frost bite and we enjoyed an afternoon pondering around the garden centre looking at all the lovely coloured plants. The Easter bunny decided to lay his eggs inside as even he thought it too cold – so we went hunting inside!

We had some beautiful cards from Karen, Helen, Kate Dee, Elizabeth and Jack, Erin F’s Nanna and Grandad, Maria and Michael, Julie Barrett and from John we got tongue twisters and amazing facts! Thank you all round!

Harry is back to school earlier than Ellie, so she is really looking forward to some Mummy time for a whole 3 days as well as her birthday! She is turning 12 and has persuaded me to let her take some friends swimming and a pizza afterwards. She is so excited!

We are doing a last attempt speech wise with Harry this term. We have worked hard putting a program together consisting of interactive time followed by picture prompts for certain activities Harry likes. I am convinced he understands our speech, words and ways of communicating, but he is unable to join our way which this program is designed to aid him. Even if it fails, it does not mean that we have failed, just that Harry isn’t ready. It might just be that we try and try and try, nothing happens and when we least expect it…

We are really looking forward to Viks BBQ idea in July and plan on being there! It would be so nice to meet some of the other guys involved in Post Pals! We have been involved for such a long time now that Post Pals are kind of part of the family.

Wishing everybody a lovely spring with lots and lots of outdoor weather!

Update 2nd March 2008

February always keeps me on my toes with so much going on! Pancake Day, Valentines, half term and not forgetting my birthday (21 again in case you wondered) and it’s the shortest month of the year with so much packed into!

Harry and Ellie got a Valentines card each – I suspect Post Pals related, however, that is just my guess. Ellie was truly puzzled but quite chuffed! Ellie attended the first Valentine’s Disco where the boys and girls schools met up – she got asked out 5 times but said ‘no’ to them all 😉

Harry had his Annual Review with school and it is becoming apparent that the damage to his brain from West Syndrome has left him more in the ‘profound’ classification as opposed to ‘severe’. We are slowly implementing a new speech program being acutely aware Harry is probably not ever going to speak, but it’s worth a try anyway. He already communicates by different means – if he wants to go outside, he’ll bring me his coat or one shoe. If he wants a toy turning on, he’ll bring the toy to me or pull my hand towards what he wants. I am mindful to the new complication of Harry being on the autistic disorder spectrum and have requested his Statement of Needs to be re-done as well as a closer look at what they actually do with him at school. I have also requested the local Child Development Clinic to observe Harry as to find out the more exact detail of the autism so the rest of Harry’s care and provision in school can now reflect this. As I always instigate all these things, it often makes me wonder what happens to those children where Mums and Dads are not as involved as I am with children…

We still battle on with the respite issue… no decision has been made yet, so we wait to see what their findings are going to be.

We’ve had some great mail this month and some super presents too! Harry has been asked to join a new group meeting on a Wednesday behind the shed 😉 Harry says can we not meet on a Saturday morning because it’s going to be hard fitting it in on a Wednesday! xxx

Update 4th February 2008

We attended the speech appointment at Great Ormond Street this month to see if we could find out if Harry is actually likely to speak and also as I’m so unhappy about our local Speech and Language Therapy service locally. They reckon as ‘Harry is motivated by cars, his adult helper should say ”beep” five times, look expectantly at Harry and wait for him to say ”beep” back’. Personally I’d have preferred ‘Mum’ or ‘I need the loo’ to ‘beep’ but there you go. So, this is assuming Harry knows how to react to an ‘expectant’ look…

It soon became clear that the Professor agreed with me and that Harry has a streak of autism which is now diagnosed. With that came the answer all by itself as to whether Harry is likely to speak – no. They also suggested the school Harry goes to may not necessarily be the best one for Harry and that his Statement of Educational Needs should be updated. So back to letter writing and meetings!

We are also at long last having Health carry out their investigations into keeping respite unchanged. I’m pleased to say it was started off by a really nice lady, working independently and therefore unbiased to the financial state of respite, who carried out the most thorough insight into our lives with Harry. So, I am hopeful someone will listen!

Harry is having his diet adjusted and changed to be more accurate, and with that, his ketones are leveling out too. He seems unaware of the background work to make this possible!

Otherwise, we carry on with our day to day routine through all kinds of weather as no two days seem the same anymore with Ellie having tons of homework which keeps her out of mischief! We are greatly looking forward to the half term to get a breather 😉

Our thoughts are particularly with a special person with many names, Kate Dee, who is going through a tough time at the moment but always finds time to think of us too. Stay strong Kate!!

Update 18th January 2008

Harry is now successfully totally OFF any medication except his Ketogenic Food which is being reviewed and fine-tuned. He remains seizure free!! Having steady and good results on the diet, I knew to anticipate the withdrawal of Phenobarbitol, which Harry has been on since his eye operation in 2005. My anxiety about reducing his medication week by week was still great though and we all kept a close eye on Harry in case he would have a seizure, but the opposite seems to have happened! He is far more alert generally, with small improvements in areas like undressing and making new sounds.

Harry is now 6 and still not talking. Making sounds yes, but nothing recognisable. I am convinced he understands simple commands like ‘we’re going in the car to get Ellie’ or ‘it’s time for tea’ or a particular favourite is the ‘it’s time for shower’ where he often repeats a sound after I say ‘shower’ but it sounds nothing like ‘shower’. I say it again though for him to repeat his sound and there we have a pattern of me repeating the right sound/word and Harry making the word into his own. So, to finally put to rest whether or not Harry is likely to ever command words, I have an appointment at Great Ormond Street for Speech Therapy at the end of January. Not sure what to expect, but it’s got to be worth a try.

The children went back to school after having enjoyed a lovely time off for Christmas. Harry received some really lovely cards from the Reindeer that hung over his bed as they arrived and they snuck in a lovely present too! Our extensive list of ‘Thank You’s’ has to include our Kate who sent Fairy Cards, Manicure Set, Lip Balms, socks, Magnetics to Ellie and Space Blanket, Chewy Tube, Glo-stars and a gorgeous spinning set to Harry. The Reindeer must have been eavesdropping too in working out the Bratz accessories and the JoJo CD for our Ellie! From the Post Pals Team came 3 figurines and a super microphone too. Helen sent a Tigger which is now on Harry’s wheelchair. To Erica from USA, winter wishes from a very cuddly looking penguin 😉 If I have forgotten anyone, it is not intentional.

So 2008 is now safely here with the unpredictable weather in the form of more floods! Sometimes I think I’d rather swap all the water for a bit of snow, but then I remember the treacherous roads just being even more unsafe with the black and dirty snow, so maybe we’re better off in wellies!! Plus it’s kinder on the heating bills! We are desperately looking forward to spring with the promise of warmer weather and lighter evenings and taking the dogs for walks over the fields without bringing all the mud from the roads into the house. It seems to be a while since we had picnic weather and were able to watch the corn in the fields sway in the gentle wind… alas for now, we have more rain…

Here’s hoping you all stay safe through this extended downpour and avoid the floods. Repeated thanks for all the love and care you put into the joys of Christmas for Harry!!

Update 2nd December 2007

November saw the last of the peace before the pre-Christmas rat race and we’ve tried to rest after the long awaited and delayed finish of Harry’s new bedroom. The builder has long since lost heart although a fair few bits are incomplete but complete enough for Harry to ‘move in’ which he has eagerly.

In my 17 years in England I have for the first time ever upheld our family tradition of Christmas baking and decorating the first weekend of December 😉 helped along by the visit of my Mum to show the children how we do things from our home. So, I write this with full Christmas biscuit belly with a tad of nougat rolled in marzipan all decorated nicely and the house smelling of orange pomanders we finished just after tea. This year, Christmas will be like it should be for me 😉

Our Fairy has been in for a body MOT and our thoughts are with her now we know what that entails! Poor Fairy!! We think of you and send you fairy wishes! Thanks also go to Sami for her lovely card and bits.

We are going to the German Christmas Market for the children to go on the merry-go-round which Harry particularly loves. We normally have to prize him off the thing!! All the lights are so lovely too.

Harry went to clinic to see the specialist and we have to fine tune his diet even more now. His cholesterol is too high and immediate adjustments of food have to be made. Also, we are taking the brave step to get off the last of his epilepsy medicine, which so far is going well. Halfway to NIL, still nothing to report in the seizures.

He is doing really well with his riding and they say that he’ll soon be able to ride with no walker by his side!! His balance is extremely good on horseback and he loves the movement!

We wish everyone a stress free December (haha) as well as best wishes for a lovely Christmas! xx

Update 9th November 2007

October brought half term and Halloween, colder weather set in too so out came all the winter gear and the swimsuits and shorts were put away. The autumn has been particularly colourful this time with lots of leaves to kick and conkers to play with.

Our fairy of many names had kindly allowed us to join in with her birthday celebration and we were very proud to meet with her to present her with a birthday cake! We sang ‘Happy Birthday’ too and I’m quite sure after that she was happy to let us go again as we’re not the most melodious or in tune of people!! We felt so very privileged in being able, just for once, to give her a little pleasure back after the many countless pleasures she gives to us.

We had some fab cards for Halloween and some scary bits too!! Our round of thanks also includes Nicole D and Mum for sending Harry a little toy, a card for Ellie and letter for Harry.

Harry’s extension is nearly complete now. He has moved in, but the builder is not quite done and keeps nipping back for one or two things. Having Harry downstairs is just fantastic and he loves his new bigger room too 😉

Update 30th September 2007

September saw the end of the summer holidays (if we can call it ‘summer’!!) and the going back to school. Harry went happily, although I’m quite sure he’d forgotten what it was all about! He was soon back in the routine though!! This term sees horse riding again which Harry loves and also a weekly swim in our public pool. Ellie has also gone back to school but she has made the move from primary to high school and a grammar school at that! It is a big change for her with lots of homework every day, something we didn’t know from primary school at all! It has been hard, and to some extent still is hard for Ellie to get used to, but I think we’re getting there now.

Social Services have had their meeting to review the decision to reduce our respite by roughly 2/3’s and they’ve decided to postpone the decision. Now they want Health to observe Harry, which in principle I agree to, HOWEVER if they are going to observe Harry, then they can do it properly and come for the WHOLE day!! Instead of the hour long visit we normally receive, where they spend half the time drinking a brew!! So, I’ve insisted they send someone willing to try what Harry lives every day – and guess what?! Not heard back yet!!

I will keep you posted so you too can give your local Social Services HELL if you need to! They want to remember we’d ALL much rather have normal kids with NO health issues, delays and other struggles, so chances are we don’t ask for things we don’t need!

Our round of thanks goes this time for a most beautiful windmill and some beady named cards. The mill is in one of the post outside and looks lovely and the cards are on the bookcase for Harry to see. Not one feedback would be complete without a mention to ‘you know who’ – fairy of thousand names!! Every time she flutters her fairy wings she spreads a little happiness and we are honoured to have her in our lives. With that also very pleased indeed that our fairy has allowed us to visit her for her birthday – we can’t wait!! We intend to sing her a birthday song but afterwards I shouldn’t wonder if she’d be glad to see the back of our completely tone-deaf ensemble!!

Update 1st September 2007

Amidst extension works, daytrips and yet more rain, we’ve made the most of the summer holidays which are now drawing to an end. We saw the busy humdrum of Chester Zoo and got special passes for the children at Alton Towers to Ellie’s delight and Harry particularly loved the tractor ride!

Ellie goes up to high school in September and her bag is packed with new stuff for school. Harry is back too with a new teacher but the same group of buddies.

We battle on to keep our respite unchanged against the wishes of Social Services and should have an outcome soon.

Imogen, Nyla, Robert and Claire have made Harry some really fab cards!! Thank you very much!! Our usual round of thanks goes to our Fairy of many Names, who is in our thoughts at the moment as things have been a bit rough. We have arranged to meet shortly, in the week of her birthday, to cheer her up a bit like she always does for us 😉

Kind thoughts to all until next time xx

Update 4th August 2007

July saw the end of the school year for both Harry and Ellie – sports days for both the children were re-scheduled several times due to the weather and in the end, none of them took place.

We had a leaving service for Ellie who is going to grammar school in September – a tearful goodbye to all her friends! Harry had the prize giving where merits and certificates were given to all.

Whilst Friday 13th is an unlucky day for some – for us it was a truly remarkable day as Harry for the first time EVER spoke ‘Here I am!’ in response to the registration song they do every day at school. I have always been fairly positive he will speak and I am certain he understands our words to him so this has given me the extra oomph to never give up trying! We are due to see the neurologist next week and I will ask him to refer us to Great Ormond Street as I’ve come across a Speech Therapy for Harry’s syndrome.

The summer holidays are upon us now with lazy mornings and chilled days. Lovely! Ellie is attending an out of school programme that gives days out and things to do, and for Harry we also have days out.

Social Services are forcing our respite to change rather drastically from the well working Direct Payment system to part DP and part Family Link. This is an unwelcome change as well as reduction of our help, so I’ve started another line of appeal and complaints. It amazes me that those to know of the least impact of a disability have the greatest say. One thing I’ve learnt so far though is that we know best – and they find this hard to argue with once confronted with appeal procedure! Just a shame it has to go that far and we have to shout to be heard!

We finally are to have Harry’s adaptations to a more Harry friendly bedroom and bathroom, only been a nearly 4 year wait, so this is our last week without builders before the upheaval starts! We should be straight just before Christmas…

Again a thought to all those more affected by the immense downpours than ourselves, as well as the usual round of thank you’s goes to our Fairy of Many Names, to Helen for sending two really good CD’s of music and to Karen for sending things to ‘chase Mum with’!! We hope you’ve settled in well in your new abode Karen!

Until next time – Happy Summer!!

Update 2nd July 2007

June saw Harry turning 6 years old which he did in style in the Portuguese Hotel’s swimming pool where we enjoyed a week’s respite. For this occasion our list of thanks as always goes to the Birthday Fairy who issued Harry with some bubbly 😉 and bits to keep warm with! Harry also received some birthday cards, a super smart racing car and some cool fly glasses! Many thanks to all!

During June we’ve gone from one kind of extreme weather to another – sunbathing to floods… Last week of June saw many parts of England under far too much water for comfort and our thoughts are with the ones not so fortunate to be on dry land. We got cut off from the outside world for a brief time and had to rescue Harry from a broken down vehicle by wading through puddles and rain.

We now approach the last part of school term before the children drive us parents mad over the 6 week summer holiday. We’re hoping for better weather so we can all enjoy the barbeques and paddling pools outside!

Ellie is winding down from primary school and getting geared up for High School with new uniform etc. She still has the usual school play in July though and last day sees the Year 6’s leave in style in a Limo for town to have a pizza! But hush! This is a secret 😉

Hope you are all well and enjoying what summer is coming our way! xx

Update 4th June 2007

Harry has now had his 2nd anniversary of ‘no seizures’ which is awesome! I think few achieve this on the diet with the original diagnosis Harry had. On the latest kidney scan, we now have the result ‘normal’ which considering he is having 50 grams of fat per meal again is fantastic! We are continually warned to expect signs of obesity but Harry is so active from morning till bedtime, I wonder if this keeps the weight off. Thinking back only 4 years ago when Harry could hardly put one foot in front of the other and tonight he was legging it round the garden trying desperately to avoid me catching him as I wanted to cut his hair!! With the hot weather and going to Portugal soon, I thought I’d use a grade nothing so he won’t be so hot on his head but he was trying hard to avoid the clippers!!

We had belated birthday wishes to Eleanor from Elizabeth and Jack. We hadn’t heard from you for ages and had been wondering if all well. We’re glad to hear from you again and thank you kindly for remembering Ellie’s 11th!!

We had a fab card from Lexie and Mum 😉 with some beautiful pictures stuck on a card! Many thanks!!

Many thanks also to Susanna and family from North Carolina – we like getting your postcards as they are so unusual!

And no month goes by without our Special Person of many names. We hope you’ve settled in well in your new home and that all went well with your body MOT 😉 this week in London!! Ellie has sent you mail but we send you special fairy hugs from here xxx

Update 1st May 2007

We all enjoyed having the Easter half term with the Easter bunny popping by and the lazy days. We also had a visit from our Nan in Denmark who hadn’t seen Harry for about 18 months and was amazed at the progress with him. We are approaching two years fit free this month on the 24th and I struggle to remember just how often Harry used to fit and how different he was. His progress is still awesome.

Our usual round of thanks goes to our special Easter Fairy come birthday Fairy for Ellie who also turned 11 this month. She is an amazing person, so full of spot on gifts and beautiful cards that line our shelves and window sills! She needs no further mention as she most definitely knows who I mean! We also had a fab easter egg chick chime, card and some lollies from our Helen 😉 and some sweeties and an easter card from all you guys at Post Pals – kind thanks all round.

Harry has twice this month been ‘Pupil of the Week’ due to hard work and achieving his targets!! Well done Harry!!

Until the next update – enjoy the good weather! Hope it’s here for keeps!

Update 31st March 2007

Harry is doing really well – as we exit from our winter warm home to the sunny afternoons outside in our village, many people we haven’t seen much of since last summer, stop us in the street absolutely amazed at the apparent progress in Harry. Speech is the most obvious area of delay although he makes himself very well understood! Although school insists Harry is well able to lift spoon from dish and feed himself, this is a skill Harry has chosen to leave well imbedded at school – why not, when I have MUM?!! But oh no – now mum knows and has gone on strike and I have to do it myself!! Harry continues to listen well and understands simple commands like ‘going to car or shower’ or even ‘it’s time for dinner’.  This is a pleasing reward for us, working and loving Harry and wishing him abilities the specialists once said impossible – but the nicest of all, is how happy Harry always is! And if he is happy, so are we…

Helen sent Harry a tambourine (Mum is thrilled… lol) which has kept him in the musical frame of mind along with his musical keyboard. He really enjoys this, along with a musical drum and at times it looks like he’s dancing! Movement and music really is something Harry enjoys along with the Teletubbies.

Our fairy of many titles continues, whilst moving from her lily pad to a new lily pad, to send love our way – you know who I mean!!

Oh, on a last celebratory note – Ellie has been accepted to a Girls Grammar School which I am so very proud of!

Wishing you all a lovely time at Easter.

Update 3rd March 2007

Harry continues to do really well both at school and at home. He enjoyed the February half term but I think he was ready to see his friends at school again at the end of the week! We spent most afternoons on playgrounds where Harry, with the abundance of his personality, made himself known to everyone! He seems to have grown another inch lately and if this growing continues, Harry will become a rather tall handsome young man!

We have had some beautiful Valentines Cards to everyone from ‘You Know Who’ 😉 as well as a card from Philadelphia US from our friend Julie. Also a fab bug card with lots of artwork which is in Harry’s bedroom and he likes to sit and look at. Mrs Hibbert sent a little love in a parcel too and for all kind thoughts and gestures, as always, many thanks and our gratitude.

Update 8th February 2007

Harry has settled well into 2007 after our lovely Christmas break. We have enjoyed a not so cold January but the snow seems to be trying to catch up now 😉

We have had some lovely letters and beautiful cards – Alan and Julie Barrett, our faithful Fairy/Elf/Reindeer/Valentine ‘oh she of many faces and names’ and I wonder if our Harry has not caught the eye of Helen who has sent a fab mobile and some super tapes with children’s rhymes in a super cassette box!!

Harry is making a new noise that mostly sounds like a long ‘yeahhh!!’ and when you say it back, he laughs.

Many thanks all round and hoping the winter isn’t too hard for you all!

Update 5th January 2007

We had a super Christmas with nice enough weather to make it to the play park most days. Harry had a beautiful stocking from our Fairy come Reindeer. Harry had some lovely presents, many thanks all round.

Update 1st December 2006

We saw Dr Philips at end of November who was very impressed with Harry’s progress indeed. We are going to carry on with the Ketogenic diet for at least another year which is fine by me. Can do it in my sleep now! Harry is growing nicely even though the diet is very hi-fat but Harry is still lovely and slim. He is quite tall for his age and very strong! Dr Philips on saying good-bye to us said Harry is a truly remarkable story.

Harry continues to do well at school – they are preparing for the Christmas play (7th) where Harry will be a snowflake. His school says he enjoys taking part and moving to the music. This year, he will also see the panto in our local theatre with school which I hope he will enjoy.

We have had a stair lift in our home for about 3 years now but Harry has recently mastered how to use the handrail to walk up – and in good old fashioned style bum it down again!! He finds this hilarious and we have to do this several times a day!!

Our Christmas decorations and lights are up, now just remains the rest of the preparations for the big day!

May we through PostPals wish everyone a merry christmas with lots of fun and laughter. We have enjoyed being with you all this past year – and at harder times have relied on your thoughts of us. I know our little Haz has touched the lives of some of you but I can assure you, you too have touched our lives and made us stronger.

As Ellie many a time has said – Harry was put with us because we’re strong enough to make his life good but thank you to everyone ‘out there’ who helps us getting there. Best wishes to everyone for Christmas and 2007! xx

Update 1st November 2006

We’ve had a lovely half term in October after settling back into the school routine. Harry continues to do well.

Ellie is busy preparing for entry exam for all girls Grammar School in December and is working very hard.

We have had the usual post from our special friend Kate Dee and some good Halloween cards as well!! Thank you to Julie also!!

Harry has begun swimming with a swim ring so he wouldn’t keep going under in the little pool, and he’s developing a kind of Mermaid style swim.

Update 8th October 2006

Harry has had a busy month in September with going back to school. He continues to do really well but the best news was when his reading from the last EEG showed NO EPILEPSY at all!!! This is news I never dared expect and needless to say, I was in tears when reading the letter over and over. Part of me has always known we could beat the first prognosis Harry was ever given and I am so proud to say that we have. Instead of being a child with no comprehension, no mobility or neck control, Harry is as mobile as a live wire, just with a lot of brain damage and delay. I wouldn’t swap for all the tea in China though!

We have had a lot more mail this month – thank you all round! Julie has sent Ellie some fabulous body jewels and a super Tweenies card which Harry loved and a few cards too. An aspiring artist has sent two drawings of beautiful landscape settings that now enhance our fridge, so thank you to the secret sender. We have had mail from Philadelphia and California too – many thanks! But best of all – we had a wonderful opportunity to meet with our Fairy / Reindeer / Easter Bunny / Santa’s Helper and very dear friend, Kate Dee. She has touched our lives more than once, and I am proud to have her in our lives! Meeting with her was something really special and I hope we’ll do it again. Big hug Kate!!

As a very last minute, we decided to have a weeks respite in Portugal again as our more homely respite arrangements are undergoing some changes. So, to re-charge a bit, we went there for a week and have come home feeling 100% better and browner than ever! 😉 Until next time – take care xxx

Update 30th August 2006

Harry continues to do really well! We have had a very laid back and relaxed summer, Harry has enjoyed playing which is a new experience for him and learning what toys can do. He has also begun twirling round and round till he’s quite dizzy!! We have had a lovely bathtime light up set of bubbles, a super little beachball and cards from Kate, Katie and Nicky – thanks all round! We have also arranged to meet with our Fairy in a couple of weeks which will be fantastic! Ellie is really excited as this particular Fairy also has special links with Santa! 😉

On a different update – I have met THAT special someone I’ve been promised really does exist – and he has taken myself with ‘package’ all in his stride. I shouldn’t be too surprised if the forwarding address may have to be adjusted as there’s every prospect of joining households!! So, although the summer ‘got up and left’ for rainy days – we have had a really nice summer all round – just with a bit less suntan!!

Update 2nd August 2006

The Summer Holidays are now here and we’re adjusting to ‘laid back late starts’ days… Heaven!

At the end of Term, Harry attended a School Presentation where he was awarded the Head Teachers Award for ‘Most Remarkable Progress’! Ellie and I attended and were SO very proud of not only Harry but also the achievements of the Staff.

It has been quiet from the Post Pals side but then everybody would be making the most of the lovely summer days! Except our faithful Elf who has spent time in hospital, a little under the weather – and we send her warm thoughts and best wishes!

Harry still enjoys his special diet although there is talk to wean him off very slowly – this being due to possible kidney damage but also that Harry is STILL the only child in The Midlands who has 100% seizure control. The hope is, once off diet, he will remain seizure free. It is now evident that Harry IS learning and his general delay, whilst still there, is lessening. We attend a special needs swim lesson once a week locally, and Harry has in 4 weeks progressed to moving freely in the water with armbands, to most insistently taking the armbands off! He keeps going under but up straight away and the instructor assures me, this is exactly what normal 5 yr olds do! So, another notch on the Milestone Stick!!!

Hoping we get lots more sunshine hours to be enjoyed all round, till next update!!

Update 6th July 2006

Harry is still fit free although there is an issue with possible kidney damage due to insufficient diet. This is a calculated risk I have to take though until the specialist no longer sees it as safe. Harry has now been fit free for 13 1/2 months and he is achieving and learning. His urine acids are raised, have been for more than 6 months, which is a kidney concern so docs arolds the midst of deciding if we have to slowly introduce normal food. This process would most likely take up to a year though.

Harry celebrated his 5th birthday in June – thanks all round. He had some wonderful cards from Post Pal followers and ‘to become friends of our Family’ but Emily, Becky Butlin, Kate Dee, Elizabeth, Julie Barrett and Post Pals deserve a special thank you!! You know why!!

Harry took part in Sports Day at School where Ellie and I watched proudly as he won the Flat Race!!! Once he got the idea and the hang of it – there was NO stopping him! Even the red banner at the end!! Considering the difficulties our children have with suthough.Harryuch praise must go to the dedication of all the teachers and staff at Harry’s school. Harry has gone from strength to strength there.

The support we as a family havButlinived through PostPals is second to none! I am honoured and touched that we inspire families and children, including school children, to write to us and include us in their good wishes. This support is invaluable! Wishing everyone a happy summer – not too hot but not to wet either!!

Update 31st May 2006

Harry has now been on the Keto Diet for 1 year with no seizures!!! He received a box full of balloons (with no sender???) but I have my suspicions!!!! I wonder if the Elf transporter didn’t bring them our way!! The Post Pals Team made a fab cardPostPals the day – many thanks!! We also had some pressies from Elizabeth which we have put up for Harry’s 5th birthday 13th June.

Progress is still marked with Harry – little things like he’ll eat by himself at school but not for Mum 😉 Harry has had his first school report and although the tasks set are simple Keto still represent milestones for the boy who wasn’t even supposed to hold his own head upright or walk.

We’re attending another clinic this week and I already know the dieticians would be prepared to take him off the diet now. I have thought long and hard about this one and don’t think I’m ready for that step quite yet. He will have to come off in another year max they say but I keep thinking ‘don’t fix what aint broken’ and ‘leave the lad alone!’ In truth, I think I’m scared to ‘be normal’ in case the seizures come back. It’s all trial and error with these things but I’d rather not test on Harry! But then, I’m Mum!! Harry, until recently, wore special needs shoes to make him walk flat on his dieticiansad of tip-toe walking as he did. We were assessed again only 6-8 weeks ago and told, no need for special shoes anymore. Whilst this is fantastic news, the normality of it is scary and I seem to cling to the diet in the same fashion.

Toaintse not mentioned but certainly not forgotten – thank you for thinking of Harry xxxxxxxxxxxxxxx

Update 1st May 2006

Harry is coming up for his milestone 12 month with NO SEIZURES this May! 24th May is the actual day! He has grown and traveled far since the first keto meal! The progress with Harry has been un-imaginable considering the prognosis and the diet now offers Harry better prospect. In April we had an early break to Portugal where Harry for the first time ever actually enjoyed the sand and sea! Last time we trfashion.Toe screamed non stop. This time, we couldn’t get him out!

Special thanks to our Elf xxxxxxxxxxxxxxxUpdate was it Ellie’s birthday but also the Easter visit was remembered! It always amazes me how many different ‘hats’ our Elf can wear! Also Sue sent some lovely thiketofor Easter – thank you. Elizabeth and Jaun-imaginablemention too and so do all the other caring folk! Thank you all round.

Update 30th March 2006

Harry continues to do really well – school reported he has signed ‘thank you’ for the first time and I have seen him react when I called his name! That completely stumped me!!

On the recent teacher strike day, Harry stayed at home with me whilst Ellie had to go to school. As he so loves being outdoors, I decided to try to wash the car and also clean inside. Harry was really enjoying walking on the gravel, looking at the stones, plants, bench and other stuff we have outside but his delight was complete round.Updateket came out!! Where all the puddles were, so was Harry!! Splashing with his hands and the water went in all directions!! The car is marginally cleaner now…

Ellie’s best friend, Sarah, is now a nearly permanent part of our family. When PalMail arrives, the girls take it in turn to open and show Harry. This can quite happily take the rest of the afternoon even if that means homework isn’t done! All the mail goes on the back of a door till it’s completely full! Julie sent a wonderful kit to make a mother’s day card which turned into making 3 lots and a whole saturday! Ellie has had a fantastic notebook from Mr and Mrs Buiskool, and in that goes all girlie secrets! And not to forget our Family Fairy – thank you Kate! 🙂

Update 28th February 2006

Harry is settling PalMail well at his new school and he is doing really well. He is mastering new skills and enjoying the more grown-up and independent way of school life. He is still fit free and enjoying his keto diet.

Harry has found the pleasure in hugs – squeezable hugs I should say! He initiates hugs and cuddles, and even comes looking fsaturdayf he wants one! He has been a bit forceful with his eBuiskool causing Ellie and I to have a few bald patches!! We are gently showing him cuddles can be nice too without ripping folk’s hair out!!!

We have had some really nice cards this month – lots of artwork and some really lovely wording too. Many thanks to the guilty parties!

Update 31st January 2006

Harry began ‘big school’ this term anketos settled really well. His day is slightly longer now and he is being worked harder, or perhaps the pace is just a bit faster? He has made some new friends and met a few who left the other school earlier than Harry. He has been practicing eating without help and holding his own cup. We now have fewer messy jumpers sent home every day and I’m wondering if he’s cracked it!

A few thank-you’s to include are the ‘frosty’ Wood’s of Darwen, Mona from Virginia USA, Rhionna from Denver USA, but particularly to Ureshino Junior High School in Japan where a whole class sent Harry a card each!!!

Update 30th December 2005

Harry had a rough start to the Christmas build up with the usual array of tummy bugs going spare. However the week before Christmas, he had found his appetite again and began to enjoy good health. He continues to have excellent seizure control (NONE!!) on the diet and Harry has begun to have a bowl of snayou’s the dining table where he is able to hDarwenmself to snacks when he waRhionnam. He is showing slight different choiUreshinog in many ways which is really lovely. He still loves being outside even if it’s minus degrees!

Our dedicated Elf has surpassed herself this year – I now consider our family to consist of my two children, our pet dog, our Elf and I guess myself!! Since being involved with Post Pals, the love and care that makes this project possible is far beyond what I can understand. However the difference Post Pals makes in our lives, every person for different reasons, is beyond my words.

We have had beautiful letters from a school in Japan, lovely cards and calendars too. Thank you ALL for wanting to make Harry’s and our Christmas so extra special. God bless.

Update 28th November 2005

We attended the follow-up at the Keto clinic where the specialist now says Harry is responding to the Keto diet 100%. Harry remains seizure free from 24th June 2005.

Harry is still more focused, with improved balance, co-ordination and progressive development. He even walks flat on his feet now where as he used to tip-toe causing him to have special shoes. Perhaps Harry too can wear normal shoes??

Harry and Mum did an appearance on ITV coordinated by Birth Defect Charity ‘Newlife’ about how little pbless.Updateold when they learn their child has a special need. Ketoaps you saw us? Many who did have told us how good Harry looks noKetot was a super day in November, not cold, and Harry went outside for a walk! That in itself is great for Harry and was once never expected to happen!

Taking this opportunity to wish all who read about and follow Harry’s battles and victories, a very lovely Christmas! Many thanks for your support in the year – we’d be lost without you.

Update 30th October 2005

Some FAB HNewlifen cards with SO much care gone into!! Many thanks to guilty parties!! Karen’s card is a real treat! Kids loved bugs – can’t say I was as thrilled!!

Nicky has provided lots of fun with super ball and lovely card – Ellie loved your jokes sent via e-mail too! We’ve had some good bugs crawl through our letterbox – I wonder if I shall have to put a grid over it in future to prevent an infestation!!!

Harry had his follow-up appointment with specialist and dietician. He is STILL seizure free (from 24 June 2004) and like an oversized toddler! Doing all normal things to a 2 year old! His progress overall is fantastic, he has recently begun horse riding at school and with that his balance is very much improved. He has made his first proper little drawing using a PC – something new to Harry. He is using a couple of Makaton signs (snack, drink) and is very aimed in his actions.

We have got a new edition to our family, Toby, border terrier x, in the hope the two of them will bond and perdietician Harry communicate. At the moment, Toby 12 weeks old, equaloversizedbeing swirled round by the tail to Harry’s delight! Our opinionated 4 yr old mini Yorkshire Terrier with a serious attitude issue, is sitting close by with a look full of disgust that this can cause someone to squeal with delight!!

In mid September, we went to Portugal again for a respMakatonak. We all tanked up with (now faded…) suntanactions.Weh!! On an afternoon out with us all, Harry kept showing that he wanted the shandy someone was drinking. In the end I gave in and let him have a sip. He scrunched his face up to look 102 but loved it!! Kept banging the table and showing the sign for ‘drink’!!

And he says ‘Mom’… Definitely!

Update 15th August 2005

Harry has been fit free (of ALL seizures) since 24th June 2005! It’s like someone ‘switched’ Harry on! Whether it’s the Ketogenic Diet, his medication, or perhaps even the eye corrective surgery of May 05 – well, who knows. All I know is that I have my boy back! What all this does to diagnosis and prognosis is far too early to say. Harry is still greatly delayed, no communication changes and ‘special needs’.

On a different note – Many thanks to Sue C and friend for their lovely bits in the mail! The Magic Water Colouring Book went down a real treat!! A mystery ‘Series of unfortunate Events’ rucksack turned up last week to Ellie’s delight! She is KetogenicOOLEST back packer in the area!!

We have had some lovely cards from Illionois – USA, Isle of Sky, and from Israel came a super beach ball! Closer to home too! Many thanks all round! All the cards are lining our fridge although they frequently fall off!! I have had to get some more fridge magnets to do the job!

We are trying to enjoy what little summer it seems we have. On the good days Harry is chasing the balls in the garden and Ellie is jumping on the trampoline.

Update 22nd June 2005

Harry turned 4 years old June 13th and goodness me – we were inundated!!! Again our Fairy was superb with toys aIllionois pyjamas! Sue Cuin has made Harry’s bath time extra fun as well as sending jingles, Lorna Rogers sent LOADS of stickers, the Butler Family sent an ace spinning top and Post Pals sent a ‘keto friendly cake’…. and Kat some super action rhyme CD’s that we’re all bobbing along to! Harry also got a colour lamp which he loves!! Thank you for all the time put into Harry’s lovely handtrampoline.Updateenough to keep forever!

Thank you to everyone for wanting to make Harry’s day so special! xx

Harry has now recovered from his eye operation in May. The day we had that done; he also began a new medication in the hope of reducing his seizures further. I had to choose between 2 types of drugs – a quick wean on and oketohat had to be introduced slowly. I saw this choice mCD’slike ‘the devil and the deep blue sea’.. I went for the quick wean on as we’d know sooner but I can honestly say I haven’t held my breath! For the 39 months Harry has been on endless medicine and any combination imaginable, absolutely nothing has made any difference until the Ketogenic Diet in December ’04.

Harry has now been on this new drug about 4 weeks and the last bad fit was 8 days AGO!!! I have finally met my son. He laughs; he’s cheeky, mardy, naughty and crafty!! And I love it!!!! He walks with a purpose and his actions are aimed. He finally accepted drinking out of a cup instead of bottle and he is again taking an interest in self feeding. He listens to what he’s being told – when I say he’s naughty well, he just starts laughing!

Ellie and I have always thought Harry was given to us to become better people. We are both so very proud of Harry and his achievements!! xx

Update 18th June 2005

Harry is now diagnosed Lennox Gastaut Syndrome and not West amardynger. West is a time limited condition affecting infancy hence why the change of diagnosis.

Update 28th May 2005

We enjoyed a break in Portugal early May taking with us the children’s Godmother to help out. Whilst Harry enjoyed respite with his PA, we lounged by the pool and dipped in the cool water when needed. Harry joined us every day for several hours to swim and splash in the water. It was lovely to have a little break where Harry was looked after giving Ellie and me the chance for some girly time!! Not to mention a decent tan!!! The day we left the rain started and it rained for several days with temperatures dipping to what we had – so perfect timing!!

Harry has now had his eye operation to fix in position his straying / drifting eye. Whilst writing this on day 4 post OP, Harry has been walking round the garden WITHOUT a hat (!!!!!!!), his balance is much better and he appears much more aimed when reaching and picking up things! We have follow-up appt in 10 days time at which point we can say if OP worked but early signs are good.

We were sat in friends garden on day 2 post OP when Harry suddenly pulled my sleeve quite insistently, saying a long ‘Muuum’. There was no doubt what he wanted and needless to say, we were all near tears!!

Harry has again had some lovely cards – Emma from Wirral deserves a mention for a beautifully simple card and Sue is guilty, again and again (!) for sending lovely hugs via loveable characters to much delight for Ellie. And the best Elf. apptlso had a card from New York from the ‘Glitter Monster’ – Guess Who!! Many thanks to those not mentioned but therefore NOT ignored nor forgotten!!

Update 25th March 2005

Harry diet is known to cause up’s and down’s, whilst he is still accepting to eat the food – his seizures have been getting very intensive causing Harry to be black and blue. Consequently, Harry is now back on medication. However on a more cheerful note, the first EEG Harry’s had done since commencing this diet is showing less activity and more ‘normal’ pattern which basically means, the brain damage is being limited.

On a behavioural note, Harry is now taking notice of what he is being told – he listens carefully with good eye contact and pays attention! His actions generally are more aimed than before so whilst I’m not thrilled in being back on medication, perhaps it’s not so bad.

Update 5th March 2005

Harry has had some fantastic artwork sent recently!! Imagination, time and love is so obviously, key words for efforts sent from Sam, who’s 5!, and also from Yvonne Hindes. These cards deserve a mention here as well!

Harry has this half term had his first respite for 6 days. Needless to say, Mum and sister took the first plane ‘out of here’ to get a much needed break – we waited 3 years for this!! Harry coped beautifully, his diet had really good figures (measuring ketones and blood sugars twice daily) and Harry is generally experiencing a much reduced rate of seizures. We attended Harry’s first keto-clinic before the half term where the neurologist is well impressed!

I have learnt the diet and can now do it sleeping, as well as mastering the art of bulk cooking!! Harry still accepts this new very difficult diet and we’re seeing good results!

On a serious note, Harry’s brain damage from 3 yrs of uncontrolled seizures is incomprehensible. He is in a 4-5 yr old boy’s body with a development of perhaps 1 yr. No speech or any other form of communication – only laughs and moans.

Harry is 95% of the time a happy lad. But I don’t think he recognized me, Mum, when we returned from our hols. I don’t feel I should be upset about this though and I handle this in a ‘matter of fact’ kind of way. It has hi-lighted the fact that all Harry needs is love, love and more love with an ounce of patience thrown in for good measure! And it’s made me look more closely at the fact that one day, Harry may well be best off spending his days in a place where there are like-minded instead of him always standing out. But for now, he stays at home!!! Even if he doesn’t know ME – I love him to pieces and wouldn’t be without him for the world!!!!! 😉

Update 20th January 2005

We have had some lovely cards and letters – Diana from US but a special mention to Santana, Rachel, Ronnie and Rebecca for their fab artwork!!! It seems Harry has touched the hearts of two Japanese schoolgirls who sent fantastic mail over Christmas!

We would like to thank everybody who sent wishes via e-mail too!! If only I could have 2×24 hours per day I would love to reply to every one. The ones who don’t already have received ‘a note from Harry’ please accept our thanks this way.

The New Year started well for Harry on his new diet! He is walking to and from the car; in and out of school and during school he’s unstoppable! It’s such a gift as Harry’s Mom to be allowed to see the real Harry – tantrums and all!! I’ve never seen Harry being naughty and he’s catching up on lost time!!

However, Harry at the moment is victim with everybody else of bugs and viruses and he’s a bit under the weather.

Update 31st December 2004

We have had some beautiful cards for Christmas – Emily’s card was particularly lovely! The reindeers sent Ellie and Harry a present EACH which was fantastic!! We also had a brilliant bubble machine that Harry absolutely loves!! We had another few things that ‘Santa’ sent – many thanks to guilty parties!!!

Being part of Post Pals in the build-up to Christmas, reminded me what the festive season is all about as well as combining the ‘post a smile on a sick child’s face’ Post Pals Statement. We have on occasion been touched beyond words. Knowing that folk go to this much trouble is warming and reminds me that the world generally is only as bad as you make it. Judging by those involved in PP and the people who come across its way are proof yet again, that the people around us are more thoughtful than ourselves.

Harry is getting used to his new diet and taking to it very well. We have much fewer seizures and Harry is generally happier. Improvements on vision and walking are still great. Harry is vocalising using different or new tones, perhaps speech may follow?

Update 22nd December 2004

Harry is doing well on this diet. His walking is 100% improved! He tolerates this diet very well considering how fatty it is. He is still having headdrops but the more severe seizures are down to less than 10 since we started – I think we’re on week 5 or 6 now! Before then, we’d have that per week! It looks like we can put this one down to having a result!!! Which means he can come off his medication!!!

Update 12th December 2004

Harry has started the Ketogenic Diet late Nov /04. He did this in hospital where even the Post Pal mail managed to find us!! We’re on week 3 (or so) of the diet which can replace meds and can mean fit-free. Harry’s seizures are reduced, not gone, and generally he seems more alert, better eye contact, more vocalisation and much improved walking. Our first Keto clinic is scheduled for Jan which will be an early indicator if we carry on. This diet is very strict and very time consuming but seems worth the effort.

Update December 2004

Harry is now home so please welcome him back by forwarding any mail to the above address!

Update November 2004

Harry is in hospital, to start the Keto diet; he is doing well and produced ketones by Wednesday which is quick and good.

Update October 2004

We are planning a Halloween party for Ellie, Harry and friends. This is Harry’s first and he’s going to be a pumpkin! Harry has settled in nicely after our holiday to Portugal and I think he’s been glad to be back at school! We are exploring the option of dolphin therapy to help Harry with speech, gross motor, fine motor, concentration etc. Anyone fancy helping fundraising?

Also special thanks to Kate Dee – beyond words.

Update September 2004

Harry is doing ok, he was sent by a Poster a toy which projects images on the wall, which he loves, and has inspired his mum to make him a sensory room with things like bubble tubs and changing lights. I’ve already sent him my old disco ball (which puts different coloured blobs on the walls), if you’re stuck on ideas of something to send him maybe anything along those lines? Harry, Ellie (his sister) and Mum are off to Portugal soon to visit family; we hope they have a lovely time.

Update August 2004

I take Harry to Brainwave, they are sort of rehab for brain damaged children. I haven’t long got back. In the past 10 months the most remarkable development for Harry is that he now chews. This is fundamental in early speech. Incidentally 3 or 4 independent people have suggested that Harry says ‘Mummy’ more like ‘ummmy’, ‘hello’ more like ‘elllo’ and ‘yes’ more like ‘yah’. These have been consistent for 4-6 weeks but hearing them often I hadn’t dare to believe. You know what it’s like. It’s about 28 degrees here, not much wind blowing and Ellie is in and out of the pool. Just had Harry in a shower – he’s been a bit grumpy with the heat and not really wanting much to eat.

Congratulations Harry, all of us at Post Pals are very proud of your achievements.

Update July 2004

Since joining very recently, we have been inundated with stickers, craft kits, teddies, water balloons, colouring books, blanket, balloons, cards emails etc.

We share and show Harry as much as possible and have all the things displayed everywhere!

Receiving all these items from thoughtful folk who want to be in our lives, means so more than we can ever express!

There is SO much LOVE in Post Pals it’s fantastically touching! Our lives are richer for sharing our sad times with you! Love Su

Update June 2004

Harry received lots of cards and presents for his birthday, including stickers, soft toys and lots more for his birthday, some people “even spent a long time making posh artwork”. They were very touched and pleased, and say a BIG thank you to you all.

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