Story written 2008

When Zack was diagnosed with A.L.L. in December 2007 we were all in a state of shock. His stomach had been distended and there was a possibility of Glandular Fever, so you can imagine our dismay at the actual diagnosis! All this just 10 days before Zack’s 3rd birthday and 15 days before Christmas. The hospital started his treatment immediately, but his initial reaction to all the drugs was dramatic and frightening as he fought for his life just 2 days later.

However, round 1 over, we made it home for Christmas, only for him to collapse again just after Boxing Day and we had an ambulance ride back to hospital. After staying in hospital for another 6 weeks, he finally came home in February, our bald little angel, and he was in remission! The light at the end of the tunnel became brighter! Off his feet due to the chemo, Zack now needs a wheelchair a lot of the time, but has had a few good months while the dosage was reduced (an Interim Maintenance period). April ‘08 saw the next intense Chemo start and yes, it was back to hospital again, 2 stays of around a week each.

If the A.L.L wasn’t enough, in the midst of all this, Zack was also diagnosed with something called Klinefelters Syndrome! This is a chromosomal disorder, which amongst other things, means our little boy also has speech delay problems and may have other learning difficulties in the fullness of time.

Towards the end of 2009, he was given several more diagnoses (mostly, but not entirely connected to the Klinefelters). We now know he has Dyspraxia (difficultly with fine movements), ADHD (Attention Deficit Hyperactivity Disorder) and will near certainly have Dyslexia as well.

And if all that’s not enough, he is also showing clear features of Autism Spectrum Disorder! So now we have a whole new raft of things to deal with (although it does make sense of many of the things he does – or doesn’t – do!). Life for Zack always seems to be an uphill battle but it should mean he gets a lot more help in his education.

Throughout all of this Zack has been a true little ‘trooper’. He still has difficulty in expressing himself due to his continuing speech delay, but seems to have taken everything in his stride. He takes all his own oral meds and used to help the nurses with his central line (now removed). Life has been turned upside down, not just for us as a family, but for everyone around us. It has hit everyone from work (I had to give up my job) to all family members, even ones we haven’t seen in years! And although he is now at a main stream school, it continues to be hard both for him, his teachers and his fellow pupils.

On a plus side, Zack is a ‘2012’ baby – he was born on 20.12.04. All children born on that date were eligible to register to be part of the ceremonies of the 2012 London Olympics and Zack has the certificate from them to prove it! All we need now is to make sure he’ll be there and taking part. Zachary – a boy so keen to love and be loved!

Update 14th March 2012

What Post Pals has done these past few years for Zack has completely and totally amazed us day after day after day!!!!! You have genuinely been the reason for SOOOOOOOOOOO many smiles on my son’s face – particularly in the dark depths of his illness – and for that we will be eternally grateful.

We can’t even begin to thank the totally amazing people who have been in touch with Zack for the past 3 or so years – you are ALL amazing! – but with Zack now being ‘officially’ referred to as a Cancer SURVIVOR, it is time to let other children still battling a whole host of problems have your attention! Please continue to put smiles on the faces of children who really need your help. Take it form a Survivor – it REALLY makes a difference!!!!!! THANK YOU ONE AND ALL!!!!!!!!!

And a final thought… the latest results are Zachary:1, Cancer:NIL !!!!!!!!!!!!!!!!!

Update 12th January 2012

Zack had an amazing Christmas – amazing in that it was ‘NORMAL’!! Ignoring his first two Christmas’s (because he was too young to understand them), the last four have been spent with him ill and/or in hospital, so a complete Christmas at home – no medications – no over tiredness – no hospital trips, it was BLISS for all concerned!! Just a shame he had to get to seven for it to happen! But get there he did!!

In mid-December, two local charities arranged for him (and Dad!) to go to Lapland to play in the ‘Magic’ Forrest in the snow and meet Santa in Santa Land – INSIDE the Arctic Circle!!! What a day – Snowfights, Snowmen, Reindeer Sleigh rides, Huskie Sleigh rides, Skidoo rides, more snow, Santa, dinner and MORE chocolate and gifts than you can shake a stick at!! A fantastic and memorable day!!!

And so now we are in 2012, hopefully our first complete year without the dreaded ‘Big C’ and associated drugs! It has been a truly rotten 4 years for Zack and all of us (not self-pity, just fact!), but here’s hoping that is all behind us now!! We still have a lot of fights ahead of us over all his other problems, so we may not (yet) have won the war, but Zack appears to emerging triumphant from this battle!!!

As ever – thank you to ALL who have shown an interest in Zack – I KNOW I’m biased – but he really IS one special little boy!!!

Update 8th November 2011

Well, it has been a very long time since our last update and I apologise to everyone for that!

So, what has happened in the last 6 months? Well, following the death of Zack’s Nana, we all headed of to the USA for most of July to sort out ‘affairs’, but then we took the opportunity to go to Orlando and spend two weeks having fun! Unfortunately, the Disney parks turned out to be a little to much for Zack who experienced several ‘melt downs’, but overall we all had a great time there.

August saw us off for a week at CLIC Sargent House in Prestwick again, where – as always – everyone was wonderful. Zack got a chance to try horse riding (loved it!) and to hold several Owls (even Toby got to hold a little one!).

We also moved home in August, so things have been really busy round here! Which means Zack has been through a LOT of upheaval, but I have to report that he has taken it all relatively well and has settled in his new home with little to no problems! His health (cancer wise) has been really good, although we did have (unfounded) suspicions that it had returned at the end of October! I guess we will be on ‘nerve ends’ for some time yet!

His other health issues continue and he starts with the ‘proper’ Autism panel later this month – it will take around a year, but (hopefully) make a big difference. He is going from strength to strength at school and, although well behind an ‘average’ nearly 7 year old, he is doing really well!

AND A SPECIAL MENTION – his school put Zack forward for the Wolverhampton Pride 2011 awards – and Zack WON the Child of Bravery award. We all got dressed up in out ‘best’ a few weeks ago for a special ‘do’ to receive it!

So Zack hits SEVEN in December – it’s hard to believe that it is almost FOUR years since his diagnosis for A.L.L.!!!! As always, thanks to absolutely everyone who has taken an interest in our little boy – whether this is the first time you have read about him or if you have ‘followed’ him for years – or anywhere else in between – it really DOES make a difference to all of us here!! THANK YOU!

Update 4th May 2011

Hello everyone! A lot has changed since Zack’s last post! Most importantly – on March 23rd Zack had his (hopefully) LAST EVER chemo!!!! We are now just on ‘follow ups’ and monitoring!! Hoooooooooorrraaayyyyyyyyyyyyyy!Of course, now all his other ‘problems’ take centre stage and have to be more urgently dealt with. Many had to be ‘held’ due to the chemo drugs and the effects anything else may have had on them.

Zack is doing incredibly well at school and things generally seem to be on the ‘up’ for him!

Sadly, his Nana (who lived in the USA) died last week and so Mum has had to travel out to deal with everything. She left a week ago and won’t be back for another 3 weeks. Due to his other issues, routine is VERY important to Zack and so, although he HAS been quite good here with Dad and Toby, things have been a bit more of a struggle for him and will be for a while yet.

So life for Zack goes on!! Hopefully, the cancer will stay away and we can start to rebuild a more ‘normal’ life for him!

As always, a million thanks to EVERYONE who has EVER sent Zack so much as an email – every single thing has been lovingly welcomed – it’s true – postie REALLY HAS brightened up a sick little boy’s life these past 3 years!!! His ‘battle’ is far from over, but hopefully it gets easier now!

A special thanks to all you wonderful girls at POST PALS itself – you do an incredible job – especially with your own issues as well – so we cannot thank you enough for everything you have done for Zack and all the other kids too!!!!

Update 6th February 2011

January passed by smoothly for Zack – no major health issues, the chemo’s (including his quarterly visit to Birmingham for a BIG chemo) went well and everything else is fine.

This improvement in his general health can also be seen in other ways, particularly his mood! He has been sooooooo good these past few weeks – he has even received two ‘awards’ from school for good behaviour! And he has won a ‘Duckling 2’ certificate and badge for his swimming!! I can’t describe how proud we are of this amazing little boy!

Unfortunately, it has been Zack’s brother Toby’s turn to stay in hospital – twice! Both times were down to viral infections that have made it very difficult for him to breathe (it was quite scary!), resulting in regular nebulisers and then inhalers plus steroids for the second attack! So although we are pleased that Zack has done so well, we are a bit fed up that we STILL end up spending too much time in hospitals!! Oh well, hopefully Toby’s ‘thing’ is over now??!!

Zack has finally been given his ‘final’ dates for chemo – the week of March 6th for his monthlies and then March 23rd for his final bone marrow check to make sure everything is ok. Then – NO MORE CHEMO !!!!!!!!!!! We are sooooooo happy and can’t wait!

As always, thanks to everyone who has been in touch with Zack at anytime, but obviously January in particular – he had some wonderful post this month! If you could only see the smile that spreads across his face when he knows he’s got ‘Postie’!!!

Update 12th January 2011

Overall, a generally great month in December and a fantastic start to 2011!!

Zack thoroughly enjoyed the Snowdome and was genuinely ecstatic when he saw Santa! So we then knew that for the first time in his 6 years, he really ‘got’ Christmas!!

But then our ‘good run’ ran out with a hospital admission at the start of December for what turned out to be yet another ‘unspecified’ infection! It really does come as a ‘smack in the face’ to be so rudely reminded of his illness when he has had such a good run! The good news is that we got it out of the way BEFORE Christmas and for the first time in 3 years Zack wasn’t ill over the holidays!

After his hospital stay, we all got a treat from Acorns Hospice and Ryan Air by means of a ‘Santa Flight’ from Birmingham Airport! Zack had a ball (we all enjoyed it – even Toby) and met Santa yet again!

Then we celebrated the 3rd anniversary of diagnosis. Followed swiftly by his 6th Birthday! And again, for the first time since diagnosis Zack was in good health and able to really enjoy himself! Mum made him a special Guitar Birthday Cake which had fireworks on it – he loved it!!

And then there was Christmas itself! If there was any problem, it was simply that it was still all a bit too much for him! By mid morning, with half the presents opened, he had had enough (he was in ‘overload’!) and so the unwrapping was suspended till after dinner (much to Toby’s disgust)!! It took a few more hours to open the rest of the gifts under the tree.

However, we were not done yet! On Boxing Day Zack opened the myriad of Post Pals gifts he had been sent but was just too tired to open on Christmas Day. And there were a few for Toby too! What a lot of truly fantastic gifts Zack and Toby received from everyone at Post Pals. Thanks so much (again!) to EVERYONE! Zack so enjoyed opening all his gifts and then playing with each and every one – we think he actually understands now what they are about (that complete strangers have found it in their hearts to be so kind) and it means a lot to this wonderful little boy.

We are so lucky to have Zack here with us, tired or otherwise, and look forward to next Christmas when he will hopefully have been off his Chemo for 8 months or so!

And now here we are in 2011!! What a fantastic start to the year we have had. A wonderful Charity called Adam’s Hats arranged for us all to go on a short holiday to a place called St Brides Castle near Haverfordwest in south west Wales. What a place!! It even had its own indoor pool which Zack frequented 9 times in the 5 days we were there! We ALL had a truly lovely time, even managing to spend time on the beach (all wrapped up of course!). A HUGE thanks to everyone who made it possible – it really meant a lot!

But now we’re back to schooldays and chemo!! But GOOD NEWS – after Zack’s main monthly chemo at hospital in early January – he only has another TWO to go!!!! Hooray!! He still has a major ‘do’ with Birmingham Children’s Hospital and will have monthly follow-ups for a long time to come – but NO MORE CHEMO!!!! We can’t wait!

As always, thanks to EVERYONE who has been involved with Zack in any way over the past few years, it has been a very trying time!

Of course, his ‘troubles’ are far from over. We are only now beginning to realise how much the Klinefelters Syndrome will probably affect him throughout his life, but with the right help and support he (and we!) will get there!!

Update 24th November 2010

November is nearly over and no hospital stays!!! (Touch wood etc…!)

Another ‘quiet’ month in Zachary’s life – even the lumbar puncture went as smooth as could be! So I have nothing to really report healthwise.

Zack continues to improve in every other way – learning, sleeping, speaking – everything! So we are all really pleased here! And (thankfully) that is all there is to report for the month so far!

However, this week sees him going to see Father Christmas at our local Snowdome (and a good old play in the snow!) and in a couple of weeks, Ryan Air will take him and some other lucky kids for a flight over the UK (and Santa will also be there again too!).

Zack may turn 6 in December, but with the learning and health difficulties he has had in his short life, this is his first ‘true’ Christmas. He understands who and what Santa is and even understands the basics of the religious significance as well – so he’s getting really excited! It is soooooooo joyous to see our little boy being a ‘normal’ little boy getting excited!

Our continued thanks to EVERYONE who keep in touch with Zack – that’s something else he has learned to be really excited about – post with a Z on it!!!

Update 31st October 2010

October started with a short stay in hospital (with the usual unspecified infection!) but then got better!

It has been a real month of changes for Zack – one brilliant one involves his sleeping routine. Since his initial hospital stay (now an incredible three years ago – almost!), he has had huge separation anxiety at night time, meaning that Dad sleeps in his room with him – every night! Also, because Dad hasn’t wanted to go to upstairs at Zack’s bedtime every night, Zack has spent the last 3 years falling to sleep on a beanbag in the living room for the first few hours. Any changes to this have led to a terrified little boy!

Well, towards the end of October, one evening Zack asked to go to bed. Mum volunteered to go to ‘her’ room if Zack went to his. Previously, this has always been met with an angry “No”, but he said yes! Thinking he would follow Dad straight back downstairs, we took him to bed and – amazingly – he stayed there (as long as he knew Mum was in the next room). He’s managed this for over a week now!!! He has also started to go upstairs during the day to play in his room ON HIS OWN – something he would never have done even a few weeks ago!!!

And this is just two of many changes that we have seen in Zack in the last month – our little boy is finally not quite so little any more!! And we couldn’t be happier!

Health-wise, after the initial ‘blip’, he has been in great form – not even suffering too badly from his monthly chemo! But he is due his quarterly trip to Birmingham Children’s Hospital for the dreaded Lumbar Puncture (and general anaesthetic) in the next few days. Ho hum! Overall though it’s been a brilliant month and he’s loving (and doing well at) school!

Update 29th September 2010

September has been a pretty good month for Zack. His new school is excellent and he is really enjoying himself there! He even enjoys going to school and back ‘on his own’ on the school transport!

Health wise, it has been a good month and he has generally been on top form, although thoroughly tired at night after his hard days at school. The last week has been a bit harder due to his monthly Chemo, but that is just to be expected.

Zack has received a lot of post this month, so our thanks go out to all of you as usual for being fantastic people!!

Update 30th August 2010

In short, August started badly but got much better!

With just 5 days to go to our CLIC Sargent holiday in Scotland, Zack spiked a temperature and ended up in hospital for a stay – there was talk of him not being allowed home in time, but he managed with just 17 hours to spare before we set off on a 300 mile drive to Prestwick! The first few days there were not what they could have been. Zack was still not feeling at his best and still recovering from his hospital confinement!!

But by Tuesday he had got past all this and had a ball for the rest of the week (as did Toby!). They both got to play with all the other children whenever they wanted and we even made friends with a family that only live about 15 miles away from us! Now we have been back home for a week and we all wish we were still at Malcolm Sargent House!

It’s all back to normal now though. Zack had to have his monthly IV chemo this week and Kerri has never seem him react so badly to events! He screamed and fought like there was no tomorrow – it took his Mum, 3 nurses AND a Doctor to restrain him to get the cannula in! This has never happened to this degree before, but I think that after such a good week (because of his low blood counts, he hadn’t needed to take any of his meds while on holiday – except for a few pain related ones) he resented it all starting up again. Thankfully, when it was all over, he acted like it had never happened, but it really upset Kerri. We are now sooooooooo much waiting for all this to be (hopefully) over next February!

In the early part of September, Zack starts his new school! He is quite excited – as are we!!

Update 3rd August 2010

Overall, what a good month July has been! Zack has generally been in the best of moods and had only low levels of pain right up to the last week of the month when both his monthly AND quarterly chemo kicked in (meaning two days in two different hospitals for treatment – including a general anaesthetic for a lumbar puncture!). Plus, his monthly 5 days of steroids and greatly increased pain levels! Still, all that is beginning to wear off now and he is calming down again.

This month he got his first ever bicycle and he soon got the hang of it! Plenty of pads and a helmet in case he falls off (only once so far!) but he really loves it! Unfortunately, it was Toby who had a fall this month – resulting in a butterfly stitch smack between his eyes. Zack was great with him though, although he does obsess a bit with blood etc – can’t say we blame him after all he’s been through!

Soon we will be back up in Scotland with CLIC Sargent, trying to have the seaside holiday he missed out on last year (see 30th August 2009 update). So fingers and everything else crossed that he has a great time this year (and us and Toby too!).

As usual, everybody has been incredibly kind via Post Pals and Zack has had lots of Posty – which always cheers him up no end! And Toby got his first bit of mail too! So thanks to everyone!

Update 30th June 2010

June started well enough and Zack even managed a day at the seaside and various other treats! Unfortunately, by mid-June, things had really taken a (thankfully temporary) turn for the worse.

Zack has frequently been exposed to Chickenpox this year but we had always been aware of it enough in advance to ensure that he got the required medication to reduce the chances of him getting it. Well, this time he had been exposed and we didn’t know until the spots started!! Thus we had an extensive stay in hospital on IV drugs as Chickenpox is very dangerous in anyone who is immune compromised. It is really annoying and upsetting that it is the treatment that causes this – not the illness!

Things got very serious for a while but he’s back home now and restarting school as well. So another huge scare but at least it’s behind us now.

Unfortunately, the end of June was also the Post Pals party and a local charity – Acorns Hospice. Zack had been looking forward to both but was unable to go for fear of the possibility of infecting other poorly children – a risk we just weren’t prepared to take.

Still, July is with us now and we can only hope that he will have an enjoyable month! He finishes in his local school and prepares to go to the new special school in September, so things are going the ‘right way’.

Thanks to everyone who got in touch in June – Zack especially got lots of post while he was in hospital and it was all very much appreciated.

Update 15th June 2010

Zack has spent the last few days in hospital with a severe temperature but was allowed home last night. Unfortunately, another BIG temperature saw him readmitted today where they are now confident he HAS chickenpox – which is of course a great worry, although he is in the best place for treatment. He is now on IV antibiotics and antivirals and will mean he’s in hospital for at least a week and then stuck at home for longer than that.

This also means that sadly we won’t be able to make it to the Post Pals party this year.

Update 30th May 2010

As our last update said, May started badly for Zack with him needing huge doses of anti-virals due to exposure to Chickenpox and then both his monthly and quarterly visits to hospital for heavy chemo. Inevitably that resulted in a ‘run down’ Zach for a while with much school missed. And then we had to contend with the possibility that his Leukaemia had returned! Thankfully, it hasn’t, but it was a tense time waiting – especially since at the same time they thought his brother Toby might have it too!! Again, he hasn’t!!

After such a worrying start to the month, it all got better!! The second half of May has seen Zack reasonably pain free (as best as we can tell), although in the last few days he has started to need pain relief again. He has made it to school most of the time and has enjoyed running around and playing in the garden in the sun.

Unfortunately, we start the monthly chemo again next week and he has to go into hospital for an MRI on his legs to try to find out what is causing the above average pain levels he experiences – yet another general anaesthetic! So hey-ho… here we go again!!

As ever, the postie is being kept busy bringing things to Zack, who seems to be beginning to understand the significance of it all, as well as being excited that he has received something – so thanks to one and all for your wonderful support!

Update 2nd May 2010

Wow! What a month for Post Pals! Thanks as always to everyone who has been writing to Zack for a long time now, but following the Russell Howard show, I don’t think our Postman likes us anymore!!! Within about 24 hours the emails started arriving and a few days later the post started!! Zack has had sooooo many letters and gifts it is impossible to thank everyone individually, but please know that every single thing, no matter how small or brief, has brought a smile to Zack’s face! THANK YOU ALL SO MUCH.

Healthwise, the month had been going reasonably well (of course, the usual chemo rages and aches etc) and he even managed 5 days without any pain meds!! We were a touch worried about it being the ‘quiet before the storm’ and we were sort of right. Two weeks ago Zack was exposed to Chickenpox at school and has had to start a massive two week dose of anti-virals that make him feel generally unwell and give him a stomach ache.

A few unexpected visits to hospital have also occurred, most recently yesterday, resulting in a confirmation of conjunctivitis (eye infection), meaning he now has to have two weeks of eye drops that sting (we tried them!). This is one thing that really frightens him and we have to do it 4 times a day for the next fortnight! And it really is a fight – he get’s so upset but we have to do it anyway! Hopefully, this will all be over soon and he will have a decent May.

Thanks yet again to all the posties and the wonderful people who make it all possible at Post Pals.

Update 11th April 2010

Zack has had an ‘up and down’ sort of month. When he’s been ‘up’ things have been pretty good, but when he’s been ‘down’ …!! He has had lots of post though which has really given him something to smile about.

His pain levels have been all over the place, from a handful of relatively pain free days, to times when he has trouble even standing and frequently falls over due to aches and pains. AND he still finds it almost impossible to tell us he’s hurting – we have to try and second guess him!

On the good news front, there has been quite a bit in March!

With all his learning needs, Zack has been allocated 15 hours specialist help per week in school, meaning that a specialist helps Zack with his learning as he is slipping further behind every day. However, even better news is that in the new school year starting September, he goes to a special school dedicated to his needs! This is a school that fully understands and caters for his educational needs and instead of being in classes of 25+ children per teacher, the maximum class size is 10 – with 3 teachers! We were a little concerned at first that Zack needed a special school but now that we’re used to the idea, we know that it will be brilliant for him and help him achieve his best potential.

As always, we would like to thank EVERYONE for the interest and love they have shown our son, but we would like to give three REALLY big thanks to Acorns Hospice, React, and the Family Fund who have all been fantastic in supplying extra help to make Zack’s life a little better!

Update 28th February 2010

Firstly, a HUGE thanks to EVERYONE who has sent something to Zack. Thanks to Post Pals, he can finally recognize his name (well – the Z at least!) and chases into the hall every time the post arrives! If only you could see the smile on his face when he recognizes there is post for him!!

February 2010 saw our Zack coming ‘back’ to us! After a dreadful start to the year in January, Zack has been a lot better this month and has even regained most of the weight he lost (and he looks so much healthier for it!).

The old twinkle in his eyes has more or less returned and his devilish laugh is back on full form! He is still in considerable pain but the meds seem to be controlling it reasonably well. We just wish he somehow found it easier to express the level of his pain, but he is still unable to do this. The doctors have agreed to reduce some of his chemo drugs (one in particular) to see if it helps his pain levels and so far it looks like it has. Of course, this means we have to be more vigilant for other things as a result!

He has even made it back to school! He only managed 4 days there for the whole of the first half term, but made it in for three days last week (and one of the missing days was because he’s had to go to see his doctor!).

We are now simply crossing everything that he can have an easier ride for a while!

Update 31st January 2010

January has been a bad start for 2010 for Zack. Unwell over Christmas, he continued to be unwell throughout the month, indeed he only managed to go to school for 4 days in the entire month. Towards the end of January, Toby was christened, but Zack looked very pale on the day and was continually complaining of owwies (pain) and this culminated in a blood transfusion and a hospital stay for pneumonia.

With his temperature yo-yoing like crazy, IV antibiotics and lots of serious pain killers seem to have finally caused the illness to ‘break’ and he seems to be getting a little better now.

He has had everyone (including his doctors) worried this month and not even directly because of his A.L.L.

It’s now the last day of January and the old Zachary ‘twinkle’ is starting to show signs of returning. We hope that February will get him back on form and we can move more positively into 2010!

Update 3rd January 2010

Zack had a great Christmas (with special thanks to everyone who got in touch and sent cards/gifts etc) and managed to stay out of hospital for the entire festive period and enjoy himself. Sadly, he wasn’t entirely well as he had a “tickly tummy” and ended up being violently sick (all over Dad!) on Christmas day and on Monday 28th (all over Mum’s car!). It didn’t spoil Christmas Day though and although it took quite a while to open the presents (it was all a little overwhelming for Zack), he had a ball!

Unfortunately, the sickness (and the ‘other end’ too!) continued, culminating in Zack being admitted to hospital on New Years Eve for an overnight re-hydrating drip. Infact, Dad and Zack saw the New Year in with the cannula being inserted in Zack’s arm! Oh well – he saw the year out as he saw it in – in hospital!! Hopefully 2010 will be a better year!

In other respects, December was a reasonably quiet month and we hope that that carries throughout 2010. Thanks to EVERYONE who has shown Zack support throughout 2009 – he looks forward to hearing from everyone in 2010!

Update 19th December 2009

On behalf of Zachary H, we would like to thank EVERYONE who has been in touch these past two years since his diagnosis.

With Zack about to celebrate his 5th birthday on Sunday, he has been very, very lucky to have such wonderful people to keep putting a smile on his face!

Thanks once again.

Update 10th December 2009

Today is the second anniversary of Zack’s diagnosis of Leukaemia! We are so proud of our little boy and what he has put up with and achieved these past 104 weeks!

Recently, the wonderful people at Post Pals sent us a special Chinese lantern that you have to light and when the paper balloon fills with hot air it lifts off into the sky. To celebrate, we went to a local park and ‘lit up’! It took a while to fill but then took off high into the sky and soon became a ‘star’ in the distance! It was fantastic (probably scared a few people wondering what it was too!).

Thanks to everyone at Post Pals for making our son smile with great regularity – you are doing something so wonderful, you should all be so proud of yourselves! And also a HUGE thanks to all the wonderful people out there in the world who have taken the time to get in touch with Zack – you can’t begin to imagine the difference it makes!

Let’s hope he has just one more year left of the illness and then we ‘just’ have to deal with all the other stuff!!!

Update 1st December 2009

It has been a reasonably quiet month for Zack. Inevitably, he has come into contact with various children at school who have Swine Flu and so has had to have the vaccine and a course of Tamiflu.

With 3 months of school now behind us, it is becoming obvious that he is steadily falling more and more behind. Various ‘experts’ are trying to sort out various levels of help, but unfortunately, this all takes time and so Zack won’t be getting the help he really needs until sometime next year. With the various new diagnoses that we had last month, all the problems he’s having now make much more sense! Unfortunately, these problems will always be with him to some extent or another.

But, as always, he does his very best to be a happy little boy (of course, the various chemo drugs he takes can make that a real challenge) and everyone who gets to know him still falls very much in love with him.

Zack has received some wonderful cards, letters and gifts in November, so thanks to every kind soul out there! Finally, this month sees his second anniversary since diagnosis and we can’t begin to explain how happy we all are that we get to celebrate his 5th birthday as well – we consider ourselves to be very lucky!

Update 1st November 2009

Health wise, it has been a ‘good’ month for Zack – no temperatures or unexpected hospital visits – a wonderful change to August!!! He has also been in a generally good mood for most of the month too!

However, we have been given yet more disturbing news this month regarding his long term future. As well as the Leukemia and the diagnosis of Klinefelters Syndrome, he has now been given a few new diagnoses (mostly but not entirely connected to the Klinefelters). We have now had it confirmed that he has Dyspraxia (and will near certainly be dyslexic as well), but he also has ADHD (Attention Deficit Hyperactivity Disorder) and is showing clear features of ASD – which is Autism Spectrum Disorder!

So now we have a whole new raft of things to deal with (although it does make more sense of many of the things he does – or doesn’t – do!). But it should mean he gets a lot more help in his education. Poor Zack, it just seems to keep piling up on him!

On a happy note, he has had lots of ‘Posty’ in October, including lots of gifts, both from Post Pals and others. As always, thanks so much for your kind thoughts.

Also in October, thanks to Post Pals and Legoland, Zack enjoyed a wonderful day out at Legoland Windsor. He really enjoyed his day there and in particular the ‘Digger’ section where he got to actually use a ‘JCB’ – boy he loved that! A fantastic day out and all thanks to Post Pals!

Update 1st October 2009

Phew! What a relief September has been after the dreadful August! With no hospital stays, reasonable health AND starting school (and enjoying it!), Zack has generally been a much happier boy this month. We have had the usual fun of the monthly steroid rages which left his new teachers a little bemused at his sudden and intense changes of mood, but at least WE are used to that!! Now we just need to get his pain levels sorted (he is in some level of pain every day) and have to start considering more seriously his learning delays caused by the Klinefelters Syndrome – there’s always something!

A HUGE thanks goes out to everyone who responded to last months posting, Zack’s appearance on the TLC page and his being a featured Pal. He has received an immense amount of mail and love from you all. If you could only see the smiles on our little boys face, you would realise just how special you all are, both to Zack and all the other kids on Post Pals!

Update 30th August 2009

What a month – we are in no rush to have another one like August! In our last update we said that Zack had 3 hospital stays and no one seemed to know what was going on.

August was supposed to be special – CLIC Sargent (Children’s Cancer Charity) had wonderfully provided us a weeks stay at their fantastic ‘hotel’ at Prestwick, about 35 miles south west of Glasgow. We arrived on Saturday the 8th and it is truly a fantastic place staffed by great people. Zachary quickly found the music room (full of every kind of instrument) and fell in love with it. Unfortunately, by the Monday we were up in Yorkhill Childrens Hospital in Glasgow where he had to have a transfusion and he (and Mum) stayed until Friday when he was transferred back to our local hospital in the Midlands! Worse was the on-off diagnosis that the leukaemia had returned!! That was agonising but Birmingham Childrens Hospital was able to confirm it hadn’t the following week. That was a hard week and a half – after all, if it HAD returned – this time we knew what it meant – real bad news. So the holiday Zack had really been looking forward to never came to be.

Back home, he was released from hospital with the usual diagnosis of an unspecified infection (either bacterial or viral!) but was re-admitted again 3 days later where he stayed for another 4 days and another transfusion. Back home now (we’ve managed a week so far!), we still don’t really know what’s happening, but whatever the infection is, it is really deep seated and we don’t think we’ve seen the end of it yet.

After so many months of relatively no problems, this has come as a real shock and Zack has responded by becoming very dependant on us and gets upset even if left in a room alone for more than a moment or so! Although he tries to be his happy little self, he seems to have become more self-aware of his illness and it can really upset him.

On a plus point, he (hopefully) starts school properly in September and boy does he look gorgeous in his school uniform. With his hair all grown back, he’s even had a haircut in readiness!

As ever, Post Pals have been fantastic throughout and Zack has received a lot more post than of late – so many, many thanks to everyone who has contacted our son – we can promise it really makes his face light up when the postman calls!

Update 3rd August 2009

It’s been a mixed month for Zack. When he’s been well, he has been as good as could be expected. We were able to attend the Post Pals party on the 4th July where he had a wonderful afternoon and we got to meet some amazing people!

Unfortunately, he has also had 3 admissions to hospital in July, including a prolonged stay in isolation with suspected Swine Flu (thankfully false!). Trying to explain to him why everyone we met wore masks and aprons was not easy due to his learning difficulties and left him scared. Then for his last visit they had no spare rooms and so for the first few hours we had to wait in… the Treatment Room. As Zack knows only too well what the room is used for, we had a very unhappy and panicky son on our hands!

And after the 3 stays – no one is any the wiser as to what’s wrong! His temperature has spiked then plummeted and is now stable, but he is in lots of pain most of the time. He is on a constant rotation of Codeine, Paracetamol and Ibuprofen! Hopefully this will pass soon.

Please keep Zack in your thoughts – we are sure it will all be ok, but for the first time in months things have become much more worrying than normal.

Update 3rd July 2009

Health wise, June was uneventful – no unexpected hospital trips etc, so that was pleasing. The effects of Zack’s Leukaemia and Klinefelters is now becoming more pronounced as his tempers become stronger! Life is becoming a daily challenge where Zack thinks he can win! He is a child who HAS to be busy – he just can’t sit quietly and read a book – he must be doing something. As Terry Scott once said – “He’s only good when he’s asleep (but you don’t know what he’s dreaming about, do ya?!)”.

On an up note – we have to express our sincerest thanks to Post Pals, the NIA in Birmingham and the childrens entertainers – The Wiggles! Zack has had a strong fascination and love of The Wiggles for some time now. When we found out that they were playing the NIA, we contacted Post Pals to see if they could help us get a meet and greet. Within a few weeks, the NIA had donated tickets (we had not expected that) and The Wiggles had agreed to meet Zack before the show! And it all came together on the 23^rd June.

Wow – what a day. Zack couldn’t believe it! He was quite star struck – didn’t say a great deal to them, but was so impressed that he had met them. Then the concert itself was great – lots of Zack singing his heart out and general merriment!

So a massive thanks to Post Pals (Vikki in particular) for helping to arrange a spectacular and memorable day out!

Update 1st June 2009

It’s fair to say that most months are a ‘bit up and down’ for Zack! Overall he has had a quiet month but some unexplained vomiting resulted in a short and anxious stay in hospital. We never did find out what caused it all though!

Dad had a week off work in May and so Zack became joined at the hip with him and they had a great time, even managing a trip to the seaside for a day. Zack loves the beach and dipping his toes in the sea!

As always, a big thank you to everyone at and involved with Post Pals for all the happiness you bring to ill children everywhere! It really makes a difference.

Update 8th May 2009

Yet another mixed month – up and down health wise (but generally up!). Not much more to say about Zack’s health this month. However, Zack now has a brother – Toby – born 24th April.

Zack has been amazing! We really expected a green eyed monster as he has had Mum all to himself for such a long time (particularly since diagnosis!), but he has been brilliant. He’s even desperate to bathe Toby and even change his nappy! There are the odd flashes of jealousy but overall Zack has made us proud.

Update 31st March 2009

Another quiet sort of month for Zack. His blood counts keep bouncing all over the place thanks to the drugs and he ended up with another bout of hospital visits due to a severe respiratory tract infection (a bad cold!). He has a constant runny nose and a horrendous cough, but otherwise he is ‘getting on’ with living.

His learning is coming on thanks to everyone who works so hard with him at nursery and we just look forward to seeing him grow to adulthood!

We’ve had a quieter month with the post as well, but none the less the letters and gifts keep on coming and keep him smiling! They keep amazing us as well. In particular, thanks to someone’s generosity, Post Pals sent a wonderful brown teddy bear that he likes to hug!

Update 1st March 2009

Zack has had yet another varied month. Apart from the usual Chickenpox scares, Zack was doing fine until the final week of the month, when an unspecified infection put him back in hospital for 5 days. You can ‘pretend’ that everything is fine and (with his new head of hair) that your child isn’t even ill, but a stay in hospital brings it all back! That and the fact that this time he really didn’t want to be there! He has developed a disproportionate fear of nurses and doctors (although now he has to have cannulas again we don’t wholly blame him!).

Still, other than that stay, he has had another good month. The post continues to arrive and keeps him smiling and he manages to make most days to nursery if he doesn’t have any other appointments etc. He is undergoing many sessions and assistance for his learning difficulties caused by the Klinefeltes etc and has just had some special shoes to help with his walking and balance.

One particular piece of post of note in February was a hand stitched cushion from ‘Stitches of Love and Kindness’ that was completely unexpected and wonderful. The kindness of strangers keeps going on and never ceases to amaze! Our continuing thanks to everyone.

Update 1st February 2009

What a month January turned out to be! NO hospital stays (although Zack has come in to contact with Chickenpox again and so is back on huge Anti-Viral meds) and he had his Hickman Line removed mid-month – hooray! Now he can play like a proper little boy again without having to worry about pulling his line out etc.

But the big event of the month was courtesy of the RAF. As you can see in Zack’s interests (above), he likes helicopters. Now when we say likes – make that LOVES! A chance meeting at a day out at the Air Museum at RAF Cosford led to him being invited to RAF Shawbury (near Shrewsbury) for the day – a helicopter training centre!

A few days after having taken his line out, we went to the base where Zack got to visit the Air Trafic Control Tower, play on the Fire Engines (and put 5 small fires out!), ‘fly’ a helicopter in the full size flight simulator AND had a flight in a real helicopter! In addition to all of that, 60(R) Squadron who had invited him on to the base for the day presented him with his very own flight suit with his own name badge and everything! He was ecstatic!

The kindness and generosity total strangers are showing to our little boy never ceases to amaze us. Thanks to everyone yet again!

Update 2nd January 2009

We NEARLY had another ‘quiet’ month (medical wise) but unfortunately Boxing Day (26th) saw Zack back in hospital for 3 days for an unspecified viral infection. A bit of a let down after Christmas Day (we had to head off the hospital at 12.30am!), but at least this year Zack got a ‘proper’ Christmas and thoroughly enjoyed himself. And that’s on top of an excellent Birthday a few days before!

His hair is now decidedly noticeable and he keeps pointing to it! He has been put on a waiting list to have his Hickman (Central) Line removed, although that will mean a Cannula every month for the hospital administered Chemo! Oh well – we’ll just be glad that he can play properly again and not have to be scared of pulling his line out!

Zack’s Birthday and Christmas Day were fantastic, with all the family turning up on the 20th to celebrate – Zack couldn’t believe his luck at all the attention and gifts he was getting! Prezzies!

The past 12 months has been a real rollercoaster ride – from the terror that was diagnosis and the first few months when he was really ill, through the intensive chemo sessions and the hospital stays that followed, as well as the times when things have been a little better. We have seen him start ‘school’ (nursery) and also seen an amazing amount of love from total strangers via Post Pals etc.

We are far from the finishing post yet, but – everything being equal – we will get there and Zack will have a long, happy and successful life! Thanks to everyone for your thoughts, care and prayers.

Without being too repetitive (!) we would like to offer our sincerest thanks to EVERYONE who has taken the time and trouble to send Zack a card/letter/gift in the last six months but particularly in December – it has made such a difference to Zack but also to us to know that so many strangers care about our little boy!

Special thanks also go to Zack’s Elf who picked some amazing Christmas gifts for him and also for the wonderful letters from the Reindeer! We ‘string’ our cards up on our wall for Christmas – this year we had two strings for us and five for Zack!

Update 1st December 2008

Another reasonably quiet month for Zack! Although he did have a trip to hospital due to tonsillitis.

With the worst of the treatment now behind us (hopefully) Zack is finally getting a head of hair again! Hooray – and in time for his 4th Birthday and Christmas too!

Many thanks once again to everyone who has been so wonderful to Zack in 2008, the cards, letters and gifts have meant so much to us all.

Update 1st November 2008

October has been a mixed bag! Zack finally took the last of his intensification drugs and even avoided any further stays in hospital! Then he had to have a short stay of medication due to a cold which meant he actually went 6 days without ANY dugs whatsoever – not even any pain relief! He hasn’t had any drug free days at all since diagnosis and it was great not to have to give him any.

Of course he’s now back on the maintenance drugs and it will probably be another 2 years before he is drug free again, but my, how it felt wonderful!

With the worst of the drugs out of the way, the light at the end of the tunnel just got a little brighter and we can only hope and believe that things get better from here. With Zack going to nursery 3 hours a day (and enjoying it), it is starting to feel all like a very bad dream that we are beginning to wake up from.

Once again we owe great thanks to Post Pals – both to everyone who sent Zack something in October and to everyone ‘behind the scenes’ who make it all possible. It is always nice to see him race to the front door and find something addressed to him! Thanks everyone.

Update 1st October 2008

September has been a difficult month. Zack has been on the 3rd (and hopefully last) intensification period of his chemotherapy and this time has reacted strongly! The most obviously noticeable effect has been all his ‘new’ hair falling out again but his ‘Steroid tempers’ and eating demands have been incredible.

He is now on the last part of this dose of Chemo and the nurses have told us to expect a hospital stay in the next week or so!

On the positive side, we have our fingers crossed that in the next week he will move onto the final (all be it 2 years) of maintenance drugs and life can begin to get back to some sort of normal. A small measure of that normality is that Zack started ‘school’ (nursery) and after a fraught few first days he is now keen to get there and enjoy himself.

In addition, he has received some wonderful letters and gifts in September, most notably a beautiful quilt from Quilts 4 Leukaemia. So thanks to everyone for the wonderful efforts you all make.

One final bit of news is that around April next year we are going to have to add a name to the sibling part of his page! Yep – he’s going to be a big brother!

Update 3rd September 2008

Unfortunately since I updated yesterday Zack has ended up back in hospital due to a temperature of 39C that they can’t get down. It’s not wholly unexpected during an intensification period of chemo, but an unwelcome event non-the-less.

They are trying new antibiotics and taking more blood for cultures. In truth, I don’t think they really know what to do, so doing ‘something’ seems to be the only option to them! That sounds like I’m moaning but I’m not – they really are great nurses and doctors looking after him.

Thanks once again for all the work and effort you all do on behalf of Zack and the other children – it really means a lot!

Update 2nd September 2008

August has been a mixed month, as we expected! The first half was good as Zack was on very little drugs, but with the re-introduction of a raft of Chemo in the second half, things have definitely got a lot more ‘moody’ here!

The famous ‘Steroid Rages’ are back with us once again and Zack is definitely feeling ‘under the weather’. We still another 5 weeks of intensive drugs to go!

On the plus side, we hope Zack will be starting school (nursery really!) in the middle of September and that this will help with some of his learning challenges.

Update 10th August 2008

July was another (almost) quiet month for Zachary (thank heavens!). He has been on the lower ‘interim’ dose of chemotherapy and was due to start his final intense dosage at the end of July. However, catching Chickenpox and a two week massive dose of anti-viral meds means not starting the chemo until mid August.

The lack of meds has meant Zack has been more of his ‘old’ self, but unfortunately that will all change again in the next few weeks (with some lengthy anticipated hospital stays too).

We can only hope that this is the last of the big drugs and we will see a steady improvement after they finish in September/October.

Wow – what a month for post! With Zack having been a featured pal, he now runs to check what the post woman has brought each day! A BIG thank you to EVERYONE who has found the time to put a smile on a little boy’s face. We are trying to get back to everyone we can – forgive us if it is taking a little longer than we expected.

Update 1st July 2008

June was a relatively quiet month for Zachary. He has finished his latest round of intense chemotherapy and is just on a small daily dose until the end of July – his hair is even starting to grow back! Without all the chemo, his pain has dropped significantly and he is even getting more confident on his feet again. So for a while we hope we can have ‘our’ Zachary with us who can enjoy this part of the summer, without the need for much pain med’s and NO unexpected trips to hospital!

Thank you to everyone who has been in touch with Zachary – we have tried to respond to everyone who gave a return address – it is VERY much appreciated! It is wonderful to see Zack smile! Zachary has suddenly become interested in when the Postman is coming! As I have said before – what a brilliant idea and how kind of all of you to do it on behalf of ill children everywhere! Although he is too young to fully understand why he is getting the posty, it really cheers him up and anything that can do that is brilliant!

Story written 2006

Toby was diagnosed with Stage 4 Neuroblastoma in September 2003. He was treated at the John Radcliffe Hospital in Oxford and had 6 months of chemo followed by surgery to removed the tumour in March 2004 when he was 13 months old. Due to the spinal cord compression caused by the tumour, Toby now has problems with his bladder and bowel and also has lower leg weakness, which means he has to use a little frame to get about. He has just had surgery to put his hip back in its socket and was in a hip spica cast for 4 weeks. He also had some tendons removed in his right foot to help it stand flatter – again due to nerve damage.

Toby has a big brother called Sam who is 7. He has had a lot to put up with since Toby was first diagnosed – this happened a day after Sam first started school. He is a lovely boy though and very thoughtful and looks after Toby very well! Although some days they do fight like cat and dog!!

All in all Toby is a fantastic little boy who doesn’t let his disabilities get him down. He always has a cheeky smile on his face and manages to wrap any nurse around his little finger!

Update January 2008

Toby remains well so we are “moving on” from Post Pals. Thank you to everyone who has written to Toby and Sam.

Update 1st December 2006

The children are getting very excited about Christmas! Thank you for all the cards this month, we have had quite a few from abroad!

Update 2nd October 2006

Toby is doing brilliantly, he is now walking without his frame (although still a little wobbly!) He has 3 visits to Oxford this month for his MRI scan on 13th, Urology dept on 11th and then Oncology clinic for results of the MRI on 26th Oct.

Update May 2006

Toby has had the “all clear” from his oncologist in Oxford who has said that it is now highly unlikely that the Neuroblastoma will return – yay! Many thanks to the Post Pals team; it really is a great thing to do.

Update May 2006

We got the results today from Toby’s MRI scan last week and they are brilliant – No Evidence of Disease!!! We are over the moon! This is now 2 years in remission from Stage 4 Infantile Neuroblastoma. He also had a good appointment with Orthopeadics and after having an Xray which showed that the pelvis and hip have healed properly, he said that we don’t need to see him for another 3 months. When we go then we will speak to the consultant about Toby’s spine as he does have a slight curvature in it, just so we know when to expect anything to happen regarding that. Then we went to The John Radcliffe for his Urology appointment and the consultant again was very happy with how Toby had been doing, I have to do some studies on him to see how much he is weeing in his nappy, then to sit him on his potty and then to catheterise him and see how much he has left in his bladder – so it is all a bit of a fiddle but it will mean we will have a better idea of what’s going on. Apparently, bladders can shrink back to a normal size so we are hoping that this has begun to happen now. So all in all a fantastic day – I cannot believe it!!!

Story written 2007

T.J was born 12 weeks early and was very sick. He spent a long time in hospital but got better in the end and came home. He had suffered from a bleed in his brain so we were warned he maybe disabled.

T.J was diagnosed with Cerebral Palsy at 9 months old; he was a late developer and didn’t walk until he was 4. He finds lying on the floor pushing his toy cars and lorries really easy though.

T.J has splints and built up shoes and although he can walk he spends most of the time falling over. T.J suffers with tightening of his hands and legs and is sometimes in pain. He loves to play with magnetix though, as he can push them together really easily.

T.J has a beautiful smile and is a very loving boy and always has a good word to say about everyone. He is a pleasure to have.

Update 6th June 2009

Teej has been really good and he is walking without any sticks for the time being. He is just so brave and gets on with it without moaning on.

He has had talks with the high school and he is very concerned about going and he has said so. I think he really wants to stay at primary school forever and never grow up. It must be really scary for him.

Teej is getting better in himself and he tried last night to get in the bath by himself. He is growing so fast and really wants to try these things out.

He is very pleased at the letters, postcards and gifts that he has been sent and wants to say a huge thank you, as when he is feeling down there is always something to cheer him up. Special thanks to Percy for his letters and the Lego and a big thank you to Lorraine for the Wii game as we are having lots of fun with this.

Update 30th April 2009

Teej got his new trainers and they are perfect. He is actually really tall which surprised me, but he is still struggling to walk. We were told yesterday that he will need to use walking sticks for a long time to come as he is swinging his legs instead of bending his knees and putting strain on his back. He is always saying his back hurts and I thought it was because he does too much. He is so disappointed at having to use sticks; he just wants to be like everyone else.

We also have to look in to his schooling as he is due to start big school in September and if he has to use sticks he will not be able to go in to main stream, so maybe he will be best starting in a special school rather than moving him once he is settled. We will have to do what is easiest for him and we are going to wait and see how he copes with his sticks first.

I haven’t updated the blog for a while as my PC was poorly and went in for repair and I lost everything, but I now have a memory stick just in case.

Teej has had some letters from Percy the poodle and he loves reading about his adventures, he should have his own book. A lovely lady called Sue sent him lots of postcards and a lucky piskie which he has under his pillow (and both the girls one too) so thank you for taking the time to write to him, it really means a lot to him that people take the time to write. Thank you everyone.

Update 10th March 2009

Teej has been having such a hard time struggling to learn to walk again. I never thought that he would do it. At first he had to just practise standing up and seeing him cry with pain broke my heart. He then went on to a child’s zimmer frame and again struggled with this. Over the last week he has got a walking stick though and he is doing brilliantly with it.

He has just had his pots off and his legs are still sore, his muscles are really weak and skinny, but he is determined he will be running by September when he starts big school.

His feet and legs are in the perfect position and he has got a new pair of fantastic splints that are so well made and support his legs brilliantly. This is the first time since he was born that i have seen his legs and feet in the perfect position.

He is waiting for his trainers to come back with a raise on as it is really obvious now that one leg is longer than the other as he isn’t growing properly, but hopefully with this shoe raise you won’t be able to notice.

He has been so bored just sat doing nothing and has been really crabby, but now he can take steps he is a much happier little boy. He can also go to the toilet alone now which makes him so much happier. He isn’t in as much pain and looks so tall stood up straight. He sees the specialist at the end of the month for a check up and fingers crossed everything will be ok.

He received a quilt today and it is so sweet and lots of hard work has gone in to it. He decided he needed to go and lay down straight away to try it out, bless him. He sends a huge thank you for his quilt, it is stunning. Thank you to all the stitchers out there who took the time to make this fantastic quilt.

I also wanted to say a special thank you to Vikki for sending us parents smiles too, they were delicious and really unexpected.

Update 6th January 2009

Teej had his legs operated on just before Christmas (21st December) and he came home the same day. He has been in a small amount of pain and he cannot put his feet down at all, so it has been very hard and frustrating for him. He hasn’t been able to play with any of his toys properly and this is getting to him a bit.

He has spent most of his days sat in his chair watching DVD’s or reading. He is getting very bored and annoyed with this. He has big heavy pots on and to cheer him up I am letting people write on them.

I do feel a bit sorry for him as he is used to being able to move around when he wants to. Toileting is a total nightmare for him, but I am trying to stay positive and think when this is over he will be able to walk properly. He is just so lonely – he went to school this morning and we are hoping that he lasts the day, he will be around all his friends and he won’t get bored and the school is wheelchair friendly so he can be moved around safely.

I just wanted to say a huge thank you to all the Post Pals (and a big lick for Percy) that have sent him cards, letters and gifts. He had the best Christmas ever and the amount of things he received took his mind off not being able to move.

Update 18th December 2008

Sammie’s operation has been cancelled as they had messed up big time. They are now both going in on 22nd December and fingers crossed they will both be home for Christmas.

Sammie will hopefully just stay one night if everything goes ok, but TJ is down for a few days depending on his amount of pain. Sammie is having her toe straightened and her bone shaved and TJ is having both his legs straightened and his tendons released (non weight bearing for a full 6 weeks).

So it looks like it’s going to be fun and games for us all again this Christmas.

Update 1st December 2008

T.J is just waiting for his operation date which should be before Christmas. He is going to have both of his legs straightened so he may be off his feet for a long time. He is a bit nervous about this as he doesn’t like anesthetic but is excited on the other hand as he will be able to run!

He needs to have it done this year as he starts his Sat’s at the beginning of next year and needs to be ok for those.

He is doing really well at school and is making really good progress. He has spent the afternoon at big school and enjoyed it, although they don’t have a lift and there was a lot of stairs that tired him out. He said he cannot wait to be big, but will be sad though as he likes primary school. We decided he would do a few afternoons at big school with him being so nervous about going and we are trying to squash his fear.

The problem with his arm has been found out. At some point he has fractured his elbow and it has set itself wrong and cannot be repaired without a lot of pain. We had a good think about this and think it must have happened at the beginning of the year when he had his operation and the pain killers have masked the pain, but we cannot really pinpoint it as he falls over all the time and never really shows the pain.

He is so excited about Christmas and cannot wait to see what Father Christmas brings him. We put the tree up yesterday and I always save the last bauble for him to do. He sat waiting really patiently for about 3 hours to do it. We wanted to do it early in case he goes to hospital early.

Update 1st November 2008

T.J. had some bad news earlier in the month – he has to have an operation on both feet. We cancelled it so he wasn’t off his feet for his birthday and now we are just waiting for a new date. He didn’t realise that he would have to have both feet and legs done at the same time, so he will be off his feet for a long time, and we are not looking forward to it at all. He is very nervous about it but I have told him once it is done it is done. We have had a stair lift fitted just for him so he will still be able to get around the house.

T.J. has just celebrated his 11th birthday and he got so much post and I still have to pick things up from the post office. His birthday and all the mail that he received has made him a very happy little, or should I now say big, boy. He had letters, cards and gifts and was so surprised by them. Thank you to you all for making him a very happy boy and taking his mind off what it going to happen.

I have started a blog for the children. This way each time they get a letter, I can put it up so that you can all see just how happy they are, and there is a thank you to each person on there too. The link is listed above with T.J.’s details.

Update 10th September 2008

T.J has started the new term in his last year and he is very sad about it as he doesn’t want to leave primary school. He has been there for 8 years and he knows everybody. He is very anxious about high school, I have told him to enjoy his last year and not worry yet. He is also sad that the school term finishes just before Halloween and he will miss out on a Halloween disco for his birthday, but he doesn’t want a party!

Thank you to Becky for the very unusual postcard and thank you to Hayley for the frog card, he loved them both.

Update 7th August 2008

T.J. has still got a sore foot and it is hurting him to walk on it, but he has to keep walking on it or it will get stiff. I do feel sorry for him and mean but he needs to keep at it.

This last month has been a funny sort of month and with one thing and another it seems to have gone by so fast. He has got very tall and that always affects his walking and balance. We went on a walk with the dogs and he spent more time on his bum than on his feet, but he enjoyed it and with the sun he is looking a very healthy brown colour.

T.J. would like to say a big thank you to everyone for talking the time to write to him, he so enjoys getting post and it always makes him smile and feel important.

Update 1st July 2008

T.J. has been to see the specialist who is ordering tests for his tremors. He is concerned that they are affecting him now and he doesn’t know why he has got them. His arm is slightly tight and he cannot straighten it from the elbow – we are hoping it is just muscle but we will have to wait and see.

T.J. is on the waiting list the see the person who deals with the gene problem. He said he doesn’t mind x-rays or blood tests but he wants it in the holidays as this year he has not missed one day from school. It is the first time in 7 years he has completed a full year and this is because the school installed a lift and he is no longer tired.

T.J. had sports day last week, the school works in teams so no one is under any pressure and then at the end they do a race for fun. Well, T.J. did the race and although he came last he did it alone and all the parents, carer’s, teachers and children were clapping and shouting his name. He finished the race and was so pleased with himself and proud he had done it alone.

He has a very sore ear that is black and swollen. During a P.E lesson he accidentally got smacked across the head with a cricket bat. I spoke to him on the phone and he said he would rather stay at school then come home. Lee went to see him and said it’s very swollen, but he wanted to stay. I am so proud of him.

He is growing up very fast and getting very tall and doing very well at everything.

T.J. received a watch from Karen and he was very fast at learning to tell the time, so now he tells me it’s time for tea or time for a bath and he knows when it is his bedtime. I am very proud he has done this. He loves his watch, he wears it every day and it fit perfectly, so thank you.

Thank you for all his cards too, especially the one from Karen with Eddie that has pride of place. Thanks to Post Pals for the little box of goodies. Every time he gets mail he is so excited, thank you once again and big hugs to all the Post Pals.

Update 15th April 2008

T.J. has had a fantastic couple of months and is really growing up fast. He had his pot removed and his leg is almost straight now. He stepped wrong when coming out of hospital and sprained his ankle, but he is ok, he just cannot run as fast.

He has had so many cards and letters and he even got a koala postcard all the way from Australia which he loved and took to school so he could show everybody that it had traveled all the way just to see him.

He is learning to tell the time, he is very bad at it though and we are looking to get him a small watch that teaches you the time, but his arms are so small he may have to wait while he has grown a bit. He has finally parted with all his playmobil toys and is really in to Lego. This was something he couldn’t do before due to the tremor in his hands, but he has got so patient over the last few months, he will work really hard to create his master pieces.

He has grown quite big and just needs to grow another inch or two so he can get rid of his booster seat in the car – he said it makes him feel like a little boy and he is a big boy now!

I wanted to thank you all for the letters, postcards and gifts he has received over the last couple of months. His favorite is his Dr Who penny that is on his display shelf taking the best spot, so thank you Helen for that.

Update 30th January 2008

T.J has decided he loves Lego and has saved up his pocket money and bought a petrol station.

He has had a really good month and has been moved up to the top group in his spellings, which I am really pleased about. He had a weekend at his auntie’s house and I missed him like crazy but he loved every minute of it.

Update 3rd January 2008

TJ started the month sad because he lost his Nanna, but with the excitement up to Christmas he soon got over it. He has had the best Christmas ever and was showered with gifts and cards and a boomerang!! He said he didn’t want to throw it in case it went all the way back to Australia as he said they return when you throw them, bless him!

He still has gifts that he has not taken out of the box as he got so many things. He has asked me if when people send him things could they put their address on so he can make them a thank you card, as he was very grateful for what he got.

He has met his aunty for the first time and is really enjoying being part of a family now and he told me today he is the happiest he has been in his whole life!

I wanted to thank each person that sent TJ Christmas gifts, there is so many to mention here, but he got 19 presents and was overwhelmed by the kindness of all the people who sent them to him! He also had a string of cards all to himself, how nice it is to know there are caring people out there! Thank you to Wendy, Andrew, George and Anna, who have sent them from Australia.

As his mum, i have been overwhelmed buy the kindness and generosity of people we do not even know. TJ has really enjoyed the last year of receiving letters and gifts from people. Thank you to everyone.

Update 2nd December 2007

It has been a very sad month for TJ as his Nanna has just died.

I owe someone an apology as they sent TJ a parcel, but I didn’t get around to picking it up and it was returned, so who ever sent him it I am very sorry about that.

He enjoyed his birthday and enjoyed the disco at school and he even managed to stay until the very end!

Thank you to Wendy who has been emailing – I have had problems with my email but they came through ok.

Update 30th October 2007

T.J. has not had a good month this month. He has had a month full of sickness and spent most of it in his bed, bless him. He has just gone back to school but was ill again yesterday, although he managed to stay the full day so I was very proud of him… The lift is in and fitted but the outside needs a little more work before he can use it. It cannot come soon enough for him. We have given up on PE lessons as they just drain his energy and hopefully when he is fully recovered he can start again.

Thank you everyone who sends T.J. post, it has really changed his life getting letters and cards from people he doesn’t know and some from far away. It has restored my faith in people.

Update 10th October 2007

T.J has had a sad month. He has had to cut his school week down to 4 days – he just cannot manage the full 5 days as he is so tired, but hopefully after the holidays the lift will be installed at his school, which should take some of the pressure off him.

T.J. has been getting postcards from around the world. He is saving them all and putting a small coloured sticker on them and putting the sticker on the globe. It’s helping him to learn about the world.

We have a countdown going as it is his birthday soon. The school is having a Halloween party and he thinks it is just for his birthday. We also have a countdown going for Christmas – bless him, he is so excited and can’t wait but only wants one thing for each!

A big thank you from him to Julie this month.

Update 17th August 2007

TJ has decided that he loves postcards and has asked me if he can collect them. He is saving them all and putting them in a flip album, whilst learning about the world…

TJ has had a really good time this month and has been really well and he has grown a little bit too. This has to be a first for him – a good month and a growth spurt!

He has just been for another eye test and his eyes have got a little worse, but he said he doesn’t mind as his new glasses are really cool!

He wanted to say a big thank you to everyone who has posted him letters, postcards and gifts. He said he loves being part of post pals. This month he especially loved some cars that were sent to him – he has played with them non stop. Thank you to the person that sent them. He also loved some handmade pictures that were sent to him.

Update 1st July 2007

TJ has just found out who is teacher is going to be for September. He and his carer and are going to be spending some time with them so that the change over is smooth for him. He is very excited about this and can’t wait to start the new school year…

He came home on Friday with 7 certificates for good behaviour. It is so nice to see him getting on at school and how nice they are about having him around…

TJ has just decided that The Simpsons are brilliant and has a massive thing for Dr Who at the moment. He has just had his room decorated in planets and Dr Who themed things.

T.J has had postcards this week form all over the world he is so excited, it’s nice to know that so many people care…

Update 26th June 2007

T.J has just got over a virus that knocked him off his feet for a while. He has also had a growth spurt which knocks all his balance off, so he is very unsteady on his feet.

He got star of the week for helping another child at school and I was really pleased with him. He showed kindness after the other boy was hurt and upset.

He has just had some results which show he is making progress at school. This is the first time he has made real progress so he was really pleased with himself.

He has just bought a new Simpson game for his play station and I never see him now he is always playing it…

He is so happy at the moment; I would like this to last forever…

Update 10th May 2007

T.J is back up on his feet again after a really bad fall that resulted in a bruised bum and back. He gets so frustrated when he cannot do the everyday things others take for granted. He is on a school trip today and was really looking forward to going. He was the only one that got to go in the car, as it was a long walk and he said that made him feel special…

He is due to get some new splints at the end of the month. This means we will have to buy him some more new trainers and he just loves shopping for new things. He is unsure of what pattern to have on his splints and said he wanted something a bit different, that’s just him…

Update 7th April 2007

T.J has had a really bad month this month and has really struggled with keeping on his feet. He has had a growth spurt but I think he has stopped now. He has spent most of the month on his bum, bless him. He has got a cold that has lasted ages, but he is much better now.

Story written 2006

In March 2005 Summer was admitted to A&E for tests. She was not walking, had projectile sickness and we were concerned about her vision. An MRI scan showed a brain tumour (benign and slow growing). Summer’s ventricles were blocked and she had Hydrocephalus. She was transferred to Alder Hey Children’s Hospital, Liverpool. After an 8 hour operation, Summer had pulled through and was in intensive care, but we were informed that Summer was now blind.

In August 2005 the MRI scan showed re-growth, so Summer had a central line inserted and started Intense Chemotherapy for four months. At Christmas, Summer’s scan showed the tumour was stable, we can’t explain the relief. Summer is still currently on chemotherapy until February 2007. Her recent scan has showed a slight shrinkage in her tumour which we are overjoyed about.

Summer has adjusted to what bit of vision she has in her right eye and uses it well to navigate familiar surroundings. She is a little miracle. We are so proud of her; she is a very happy little girl and makes everyone who knows her smile.

Keep fighting Princess!

Update 6th February 2011

We are so so relieved to have received such good news for Summer’s scan results, it is the first time in 5 years that we have been for results and not had a ‘BUT…’

Summer’s next scan is in June. She is still not out of the woods as she still has residual tumour remaining in the optic nerve area and we could still face relapse at any time in the future, but are really grateful that we have the time in between to enjoy, and her prognosis for the future is getting more positive too.

We decided to continue with the daily growth hormone as Summer has grown 3cm in the last 4 months and without it affecting the tumour growth. We are extremely relieved and hope to give her the benefits it will bring.

Summer has other outpatient appointments this month and next and we are back at hospital in May to see her other consultants about her growth levels.

Thank you to everyone who has sent positives thoughts and wishes, it really does work. We send our thoughts to the other Post Pal families too.

Thank you for the lovely memory parcels for Summer and Phoenix, the note pads, letters, cards and pictures. Our children are very grateful.

Post Pals is a truly wonderful and hardworking charity. We are very privileged to be a part of Post Pals and continuing to spread the smiles.

Update 2nd January 2011

HAPPY NEW YEAR EVERYONE!

Santa was very kind to us all but sadly Summer got a sickness bug on Christmas Eve and was poorly through the night and then it was passed onto all of us over the Christmas period, but thankfully we all feel much better now. We would like to thank EVERYONE who sent the children Christmas cards and gifts and to the assigned reindeers and elves, our children are extremely lucky and love all their post.

Summer has her MRI Scan on the 12th Jan so we have everything crossed for stable news. Sadly this time we do have to wait longer than usual for the results (which are the 25th January) but we have booked some pantomimes and other activities in between to keep us all occupied. All being well, if there is no change, Summer will continue on her growth injection despite it not being pleasant, but she is coping really well with it and we all wish for the benefits it will bring.

Thank you for everyone’s support and smiles that they bring into our lives and a massive thank you to Hayley who was Summer’s assigned Pal last year, we will continue to stay in touch. Thank you to everyone from all around the world for their cards and thank you to Jenny and Pippa for writing to Summer in Moon, it was very thoughtful. Thank you to the Elves for sending the children amazing parcels and gifts, it was extremely kind and thoughtful.

Update 4th November 2010

Apologies for missing our September update but we are having building works done. Hopefully all will finish soon and we can get back to normal though.

Summer is doing well at school and has started learning Braille again which she is enjoying. She has been taking her daily growth injection too and being extremely brave. The children went to watch Disney on Ice in Manchester and loved it. Summer’s next scan is 12th January so we are going to enjoy Christmas and see what the New Year brings.

Thanks to everyone who sends post and parcels. Apologies if we have not had chance to reply but we are very grateful and it really does make the children smile. Many thanks to Post Pals for the Halloween goody bags – the children were delighted! Thank you to everyone who takes the time to write and the thought that goes into the parcels is overwhelming.

Update 16th September 2010

I have mixed news. The great news is that Summer’s tumours remain stable with no new progression at present – we had a long chat with the consultants regarding Summer’s prognosis and future treatment – he stated that the lesions near her brain stem that showed growth in January are new and not from the original diagnosis in 2005 which is the optic nerve and hypothalamus region, so they will continue to monitor her closely and re-scan on 12th January. He also said that with this type of tumour he would expect relapse within the first 3 years of having chemotherapy but it has been known for some patients to relapse within 3-6 years of treatment. He also confirmed that chemotherapy works for 35% of patients to keep them in remission, but sadly we know this isn’t the case for Summer. Just to add to our worries, they are still insisting that growth hormone is not linked to tumour progression and the importance this treatment is to Summer’s future health.

We have until January to give our decision if not sooner. There is no right answer or easy solutions without high risks – it is like a rollercoaster ride you can never get off. On saying that, we do have so many positives and that is seeing Summer waking up every day with a big smile asking what’s happening today!!

To Post Pals and all your support who deliver smiles on a daily basis, you really are all tremendous and we are extremely grateful – I know the children love Post Pals, so thank you!! With thanks this month to:- Benedicte, Mandi, Hayley, Sam King, Viks, Sheelagh Hawkins, Katie, Nikki, Jade Sherwood, 2nd Chirk Brownies, Teresa. Apologies if I have missed anyone.

Update 19th August 2010

The children have had a lovely month of post. Thank you to all the Team – especially for their unique pillow cases as it really is a wonderful keepsake. Also, many thanks for the Alton Towers Tickets. We all had a wonderful day out and Summer was so delighted riding a car with the Peugeot Driving School with the help of the staff steering the car for her. The highlight of the day was having her own driving license, bless her.

Thanks to Josh Turner for the lovely card and badger as it’s so cute, to Sarah G for the postcard, Ella, Theo, Poppy and Imogen for their pictures and cards, Sam King for the princess pencils and rubbers, Hayley Rose for the Summer Theme Parcel which is so very kind, Karen for the card making items, Mandi for the Camper t-shirt, yellow campervan, stationery and little horse and letter, Jodi for the Bob the Builder colouring set for Phoenix, Kate for the Campervan picture and postcard. Our children are very lucky.

Summer has her scan next Friday so we are thinking lots of positive thoughts and will update when we have news.

Update 5th July 2010

We would like to send our thoughts and wishes to all the Post Pals families and let them know that we are thinking of them.

Summer had a hospital appointment this month and she has a sticker chart for when she eats new fruit and vegetables. With her not being on the growth hormone injections at the moment, we have to be careful what Summer eats to maintain a healthy lifestyle for her. She is doing really well and trying very hard. Summer also has her next MRI scan on the 27th August.

The children have had another lovely month of post thanks to everyone at Post Pals!

Phoenix had a lovely birthday with a few friends in the garden on his bouncy castle and would like to thank everyone for his cards. Summer has been over the moon with her post this month and is delighted at all the notebooks and pens that she has received. Thank You. We will try and respond to all who leave an email or address.

We have a new addition to our house called Eric the tortoise (that was his name already so we thought it was only fair to keep it)! The children love him and he’s also very tactile for Summer to feel. Even Star (our rabbit who is nearly eight) has accepted him into her garden too which is lovely.

It is nearly the end of another school year and I cannot believe Summer will be gong into the Juniors – it has gone so quickly.

We are going to a VW Show this weekend with the children so are hoping for some sunshine.

Thanks to:-  Halfcost/Post Pals for the dressing gown, paint your own plant pots, the cars for Phoenix, handbag/shoes pencil case, mp3 pillow stereo, light up flower. To Jodie for the Kitty pens, Hayley for the fame pencil case and miss chatterbox soft toy, Steph for the notebook, Grace/Jill for the notebook, Sarah for the notebooks, Jess for the card, Teresa for the notebook, and Sheryl for the notebook. We would also like to thank Hayley for the very kind parcel for Father’s Day. Apologies if we have forgotten anyone but thanks so much.

Update 15th June 2010

Summer has been doing really well at school and has earned a certificate and medal from her specialist teacher for effort. We had a busy half term taking Summer and her siblings to Woburn Zoo safari park which was brilliant and we would highly recommend. There is also a walking safari so Summer could walk really near the wallabies and baby monkeys, and she went on a swan boat with daddy too. We then went camping near the coast in our campervan and were very lucky with the weather as we had bbq’s and spent quality time playing outside.

Summer still goes horse riding each week and really looks forward to it. There is a new horse that Summer has ridden called Pebbles and last week she was on Toppy.

This Friday she is starting private swimming lessons. She goes every week with school but as she likes it we want her to have more opportunities on a 1:1 basis.

Next week we look forward to seeing Summer’s sports day and the end of year assembly.

Summer has got a hospital appointment at the end of the month but her next MRI Scan is not until the end of August so we appreciate the time we have to enjoy together.

We are so grateful to everyone who takes the time to write and send gifts; hopefully we will try and reply. We have so much thought and kindness being sent through the post and it’s nice for me to read other people’s interests and hobbies to Summer – she says she feels lucky to receive her post. We’ve received a CD, craft, teddy, bags, stickers, balloons – everything our children could wish for and more! It’s very kind!

Hope we don’t miss anyone out but THANKS to… Bethan, Amber, Hayley-Rose, Sarah G, Iona, Natalie, Samantha, Jazz, Nicola, Caroline, Sam King, Leonie, Despina, Paul, Stef, Baby Keera, Polly F, Sophie, Stephanie, Dominic, Karen & Family, M.Thacker, Laura, Billie, Becky & Sohpie, Castercliff Primary (Lucy, Shone, Kayleigh & Kiera), Melissa Basquil and more!

Update 5th May 2010

We are so grateful and thankful that Summer’s results were so amazing – it has given us another 4 months until the next scan the end of August. We just need to make the decision of starting the daily injections again which is a very difficult decision but I know we will do the right thing for Summer.

Summer and Phoenix have had a fabulous amount of post thanks to Post Pals and Russel Howard – I am so pleased that Post Pals is getting the recognition it deserves and that people are finding out about the great work that the Post Pals Team do! The children’s smiles are priceless; they get so excited when they receive their post – thank you!!

I hope we don’t miss anyone out but thanks go to:- Hayley- Rose, Sarah G, Lesley, Steph, Francesca and Scarlett, Libby, Cavelle, Emily & Mummy, Sean, Matthew Kenyon, Liz, Stephanie & Baby Lucas, Heather & David, Maria& Michael, Kate Dee, Margaret Nagy, Suzie & Taylor, Willow, Horndale County Infant School, Helen Clark, Lucy N and emails from Suzi Mooer, Nicola Presavage, Bronn Broker, Rachel Samuels, Lesley & Tyler, Victoria Moloney, Nicole Finlay, Ally Seddon, Jessica Chapman, Andy Gibb.

Update 27th April 2010

We went to Clinic today for Summer’s results and feel like a miracle has happened… her tumour has had shrinkage and is smaller than the growth in January. There is no real explanation and I cannot describe our happiness and relief to have such a weight lifted for the time being! Summer is still under close observation and will require another MRI scan in 4 months time – we do have a tough decision to make in starting the daily growth hormone injections again which is just as important to her health and keeping the tumours stable.

We cannot thank Post Pals enough for their tremendous support and messages that have been sent in the past couple of weeks. Whilst we feel we can breathe a little easier now and have a little celebration, we also wish to send prayers and positive thoughts to the families who need it at the present time.

Love, hugs and smiles, from Summer and family XXXXX

Update 11th April 2010

The children both received some lovely post last month, thank you so much to everyone who sends mail, it is extremely appreciated.

Summer had a wonderful birthday, it was very special and even more so to have shared Mother’s Day on the same day! The animal party went down a treat, it was a great tactile idea for Summer and her friends enjoyed it too. Summer also had two visits from the tooth fairy in one week so she was very pleased.

Summer has had some hospital appointments over the last month but everything is on hold until we have the scan which is less than 2 weeks now. The nerves are setting in but we are being brave and strong for Summer as she is so aware of everything now she is older and we don’t wish to tell her too much, but don’t want her not to be prepared either! So thanks for everyone’s continued support. We will not know the results until the 27th April so will be able to share this with you then.

We had a week away over Easter and stayed in a little English cottage and had days out. It was fantastic quality time with the children despite the rainy weather and once we arrived home the Easter Bunny paid a visit. Hope you had a lovely Easter too.

Thank you to everyone who takes the time to send our children smiles and I would like to say a special thank you to Hayley for thinking of me on Mother’s Day and for my gift – it was such a wonderful surprise.

Update 1st March 2010

Thank you to everyone at Post Pals and for welcoming Summer’s return. Summer and Phoenix have had a great Postie Month, it really has made them smile and excited.

Summer has got hospital appointments this month and her birthday which she is very excited about. We have booked her an animal party so she can feel and hold them if she wants too.

April is a big month for us as she has her MRI Scan which will determine whether she goes on chemotherapy treatment again every week for two years. So we have everything crossed for her.

We would like to thank everyone who sent Summer and Phoenix post this month – Emily Holden-Storey for the beautiful gifts, Laura and Jamie for the photo and lovely letter, P – card, Rosie – card, Sarah G lots of cards, Williams S Valentines Elephant, RKEM Designs for the beautiful hand made bag and purse, Niamh W beautiful gifts, Hayley-Rose cards and Audio CDs. Our children are very grateful, thank you. Apologies if we have left anyone out.

Story update January 2010

Summer left Post Pals for a while as she was doing really well. Unfortunately, scans in January 2010 have shown new tumour growth, so she has re-joined.

As she is currently well in herself, her parents are going to wait until the next scan in April before deciding what to do. They then might have to start second line weekly chemotherapy for another 2 years or radiotherapy.

Update 9th February 2009

We are delighted to inform you that Summer’s scan results remain stable and there is no new progression, which means we have 6 months of breathing space until her next scan (which is a week before I am due to give birth!). They said it is priority now for her to start growth hormone injections, as it was first noticed nearly a year ago, so she will hopefully commence them after the next scan if that remains stable.

The day of the scan was quite traumatic for Summer. She had the magic cream put on which she was fine with, but when they tried the cannulas they wouldn’t go in as her veins had collapsed, so she had to have gas. They then told us that her Consultant was away until the following week so it was the longest weekend we had had in a very long time. Thankfully it was a positive result which we are truly happy about but cannot begin to describe the anxiety of waiting and not knowing.

Summer has started doing swimming at the Blind school that she attends twice a week and she is enjoying it. She is getting confident with her moon too and is now spelling words and can read moon letters. We are so proud of her progress, she is working very hard.

We have made a decision in that we feel extremely lucky that Summer has been treatment free for nearly two years and feel that it is time for Summer to move on from Post Pals so that it gives a chance for other children in need to receive the wonderful support and smiles that you can give on a daily basis.

I cannot begin to explain the happiness and positive thoughts that Post Pals has had in our lives over the past few years and it has certainly helped Summer to keep on fighting through her journey and keep her smiling every day. Summer wants to be a postman when she grows up like her daddy so she can deliver some cards to children who need a smile.

We will still regularly check on the other Pals and send post though and keep you updated on Summer’s progress.

We would also like to send a cheque to Post Pals to show our appreciation and to keep the smiles going.

Thank you all so much!!

Update 30th November 2008

Summer is remaining well apart from a lump on her right eye lid. It is looking like she will need an operation to remove it as it is getting larger, so we are going to be moving forward her eye appointment.

Summer has also recently started a dual placement where she attends mainstream school 3 days a week and a Visually Impaired school 2 days a week and it’s working out well. We are so proud of how Summer has settled and she is working so hard. She is now reading words in moon which is a type of braille and she is so happy about it.

Summer is delighted to be a Christmas Elf again this year and I think if she could she would love to buy everyone a gift!

Thanks to everyone at Post Pals who continues to send post to all the Pals, including Summer, it really is an amazing charity and well done to Viks for her award, it’s so deserved!

Update 11th November 2008

Summer had such a wonderful posty month and from people in America too!

Summer has had quite a well month apart from that very nasty sickness bug that everyone had.

We enjoyed a few days away at school half term with friends in Abersoch and the children loved the freedom of being outdoors despite the freezing weather. We also took a trip to Gloucester to collect Summer’s new red trike and she was so so excited it was wonderful – so we have wrapped up warm and been on a few short bike rides.

Summer has got an eye appointment in December so we will be able to find out if there are any changes.

Summer would like to thank everyone who kindly sent her cards (including handmade ones), letters, and craft presents. Thanks to Erin and Kyle for the dolly and pony, Kate for the amazing craft box, Laura for the cuddly squirrel, Maria and Michael for the Halloween card, Maddie for the Summer card, Margaret in America for the Smile Card, Helen for the fabulous Campervan Card, Jane for the Disney CD, Garce for the pencil holder maker and jewel box set, and so many more, apologies if we haven’t mentioned everyone but Summer is so grateful and feels so lucky to receive post!

THANK YOU POSTPALS!!!

Update 30th August 2008

Summer has been busy having lots of days out on picnics, feeding animals, quad bike riding, collecting shells on the beach, lots of craft activities, horse-riding, and it has been great fun.

Summer had her MRI Scan this week and despite her appearing extremely well and healthy with no symptoms; the scan has revealed a new mass next to her brain stem. The Oncologist cannot confirm whether this is tumour or not but there has been growth since the last scan. It is too risky to biopsy, so the plan for now is to observe until her next scan in January. If there is more change then Summer will need to start weekly chemotherapy again for two years! As you can imagine we are pretty gutted but have decided to have as much fun and experiences between now and January just in case our journey takes a different path.

Summer has received some beautiful cards and gifts this month, all very thoughtful. We really appreciate the time and thought that goes into making these beautiful cards, thank You! Thanks for everyone’s continued support it are very much appreciated.

Update 4th August 2008

We have been enjoying the start of the Summer Holidays – in fact the time is going very fast. We had a few days in Stratford last week and took Summer and her baby brother to the Cadbury’s Factory. We had a great time tasting chocolate and the tour was great. We then went to Abersoch for a few days and stayed with friends – Summer and her daddy went quad biking! I couldn’t believe how brave Summer was – she was having the time of her life!

Summer didn’t enjoy swimming lessons and she said ‘please don’t take me back’. To be fair, it must be frightening with little vision, so we have decided to wait until Summer feels more confident in the water. She loves her horse riding lessons and this week is going on a special Horse Riding Picnic at a different Riding School – she is very excited!

Summer’s scan is in two weeks and she is getting a bit anxious now and asking questions. She also has to have two teeth taken out while she is under anaesthetic, so your thoughts will be appreciated on that day. In the meantime, we plan on sharing lots of experiences with Summer and her little brother before she goes back to school.

Thank you to everyone who sends Summer post and follows her journey – apologies for not making the Post Pals party but hopefully we can attend in the future.

Update 3rd July 2008

Summer has had yet another lovely month of post, thank you to everyone from Post Pals! Thank you to everyone who thinks of little Summer and ALL the brave children!

Summer has started horse riding and absolutely loves it. We were not too sure whether she would like it or not but want her to have as many experiences as possible. She is going again tonight and the horse that Summer has been riding is called Libby.

This weekend Summer is going to start swimming lessons. She is confident now about going into the water, whereas before she couldn’t go because of all her chemotherapy treatment and central line. We will let you know how it goes.

We have been back to the hospital and have been told that Summer will require daily injections for many years but we have time to make our decision. Summer’s next MRI scan is in August! We have everything crossed for that.

Update 6th June 2008

We have had a brilliant time – in the half term holidays we picked an activity or an outing out of a hat so everyday we had something nice and fun to. We went on a walkabout picnic, swimming, did craft activities and Summer actually let us paint her hand so we could have her and Phoenix’s handprints, yay! We had a great day out with National Children’s Blind Society and Summer loved it, she got to play on the drums and electric guitar, meet people similar to herself, jump in the ball pond, pick some eggs the hens had laid – it truly was a fantastic experience for all of us!

This weekend we are away again in our VW Campervan to a show – weather is looking good. Plus baby Phoenix will be 1 this weekend so Summer is very excited for him.

Appointment wise, this month we will meet with Summer’s Endocrine doctor to discuss treatment plans and also the Dentistry Dept have sent their referral through so we have a few things to be going on with.

Summer has received some lovely cards this month – she said “I cannot believe how nice people can be to send cards and pictures to me!” Special thanks to the Post Pals Team and Laura H for the wonderful craft set and fluffy bag! To Jim for her wonderful smell card, it was very impressive and thoughtful. To Kate W again for a beautiful card, Shirlayne, Elidh, Emilia and Aine for their wonderful hand crafted Braille card and Hayley Thorn for her beautiful handcrafted postcards. We hope we haven’t missed anyone out. Thank you all so much!

Update 1st May 2008

We got some news this afternoon regarding Summer’s blood results. Unfortunately they are not what we wanted to hear – she is going to need growth hormone injections daily. So we’re really gutted for Summer as she has been through so much in her little young life.

Update 31st April 2008

We are all doing fine. Summer and Phoenix have had a wonderful month of post and parcels thank you all at Post Pals.

Summer was in hospital last Friday to have hormone level tests and ultrasounds – she was beyond brave – she was starved from Thursday at midnight and couldn’t eat until Friday lunch time. Over the course of 4 hours she had 9 blood tests and she wouldn’t eat and drink after the tests so when she went to ultrasound she didn’t have enough fluid inside, so after another hour we went back and they were able to do the scan. We are awaiting the results now to see if she needs growth hormone or any other medication.

Summer has also got the dentist next week. She needs to be referred to the hospital to have her tooth taken out as she has had an abscess and due to the chemo and diet on treatment, her teeth are now very weak. So we will keep you posted on news.

Special thanks to Shirlayne and family for cards, jokes and the fabulous card making set. To Post Pals for the Louis Vuitton bag! Grace for the hair accessories, she loves them! Also to Lynn for the beautiful fairy doll. Thanks to Jenn, Helen F and Seren S too. Thank you all for putting a smile on Summer’s face, it makes more of a difference than people realise. She was especially happy when she knew her brother had received mail too so thank you!

We are so grateful and overwhelmed that so many people take the time to think of our precious children and to put smiles on their faces everyday .

Update 11th April 2008

We would like to thank everyone at Post Pals! Summer received a lot of mail this month and she was so excited everyday.

March was a very eventful month for us. It started with Summer’s 5th birthday, where she received a staggering 60 birthday cards and all the princess goodies that you can buy! She was extremely happy to receive some sweets through the post, a reiki teddy, handbag, hair accessories, cd’s, stickers, everything that she could have wanted and much more.

Summer then went on to have her MRI scan, which she was very worried about going for, but again amazed us with her bravery! We are delighted to say that her tumour remains stable after a year off chemo, but she does require further endocrine tests, which she is going for this month. She is having her hormone levels checked and an ultrasound.

Then it was Easter! Again, thanks everyone for their lovely Easter cards. I don’t think Summer could believe she had much more post than mummy and daddy and she shared it with her baby brother! We did a treasure hunt which she loves.

The end of the month we had a week up in Scotland, it’s so relaxing we could have stayed there! The children loved the freedom and enjoyed making some new special friends. We had days out to an animal farm, a castle, crafts, it was brilliant.

Now it’s back to school!

Update 29th February 2008

Summer has had a fantastic month with Post Pals, thanks to all who have sent Summer cards and presents, even Valentine’s cards from abroad!!

Summer has had a mixed month complaining of head aches and falling over far too regularly, bless her. She is doing brilliantly at school and her progress is great. She has learnt to type S in Braille and can spell her name verbally.

She has been very socially active – swimming, days out, picnics, playing with friends, the cinema, and lots of birthday parties!

Summer is going to be 5 on the 14th March – what a celebration for us all! It is 3 years since Summer’s diagnosis. Her scan is on the 17th March and we have to wait 8 excruciating days for the results, but as soon as we know we can let you know.

Summer has grown 3cm in the last six months but it is very below average
compared to her weight and age, so we will be meeting with the Endocrine team to discuss if Summer requires any intervention yet, but hopefully not .

We are going to Scotland for a week at Easter and really looking forward to the sea air and quality time with Summer and Phoenix.

Thanks Everyone!

Update 30th January 2008

Apologies for it being late, but I would like to thank everyone who sent Summer parcels and cards at Christmas!

Summer is still doing really well. She has settled into school and is very popular, especially with her being pretty small as everyone wants to look after her. This is nice but Summer is very independent and likes to feel that she can manage on her own, which is understandable.

We went to Euro Disney for 4 days last week and had a magical time. Summer was so happy to meet all the Princesses (her favourite being Cinderella) and Phoenix loved all the characters. It was an experience we can treasure forever!

Summer is going to the dentist this week for 2 fillings which is pretty bad at her age, but I think the chemotherapy has had an impact on her teeth. I will let you know how that goes!

Summer is 5 in about 6 weeks which is an absolute miracle for us especially, after her diagnosis at 2, so an extra celebration for us. Two days after her birthday, Summer has her next MRI scan to determine if there has been any further tumour growth. She will have been off chemo for nearly a year by then. So fingers crossed.

Summer has started learning Braille in reception class now and seems to be enjoying it. She can spell her name but cannot write it yet. We are so proud of her!

Thanks again to Post Pals for their continued support, it really helps!

Update 4th December 2007

Summer has caught a cough and cold from school and it has wiped her out, bless her. We had two hospital appointments last month, one with our local Paeditrician to see how Summer’s growth and weight is. After all the chemo she has had we are waiting and observing at the moment, but next March we might have to intervene with growth hormones if Summer doesn’t start growing soon. Hopefully all will be ok. We also saw the Eye Specialist who was over the moon with Summer, he said she was very co-operative and a little angel. He also said her vision has not improved, it’s her ability and confidence that has, we are so proud of her! Our next MRI Scan is on the 17th March just after her 5th birthday (which will be another personal and double celebration for us all).

We are all very excited about Christmas. It is extra special for us this year as it will be the first Christmas we will be at home as Summer isn’t on treatment at the moment. It will also be Phoenix’s first Christmas too.

We are very fortunate enough to be going to Lapland next Tuesday, we haven’t  told Summer yet so it is a bigger surprise.

We would once again like to thank everyone including Post Pals for all their support and parcels and cards that Summer has received this year. We are eternally grateful and are so happy to be able to be an Elf this year and make someone else happy.

THANK YOU

MERRY CHRISTMAS AND A HAPPY NEW YEAR!! 🙂

Update 1st November 2007

Summer has had a brilliant month receiving post it’s been lovely for her. We also have some really great news! Summer’s scan results were positive; there has been no tumour growth since the chemo completed in April, so 6 months off treatment now.

Summer’s scan day was very traumatic for her, they put magic cream on both hands and tried 4 needles in one hand and two needles in another before deciding that she would have to be put to sleep with gas as her veins have collapsed and they couldn’t put a cannula in. It was so upsetting for her and for us, when she woke up from her scan she was hysterical as she thought something was still happening to her so it took us an hour to calm and reassure her that she was ok.

We can now celebrate our first Christmas in three years with Summer well and we cannot wait.

We all had a fantastic time in Scotland, Summer held a giant cockroach! She touched lots of animals, we visited a farm, a transport museum and even saw an Old VW Campervan just like ours!! We also went to a science museum which was very busy because of school holidays, but it was very tactile and sensory and was a great day out for us all! At night we would walk along the beach and enjoy the sea air and Summer made lots of new friends.

In the half term holiday we took Summer to visit Thomas the Tank Engine Tour which was at Llagollen Railway and she thoroughly enjoyed it. We also went swimming, Summer was so brave she went into the water with the arm bands and enjoyed splashing her legs while we held onto her. She has been a very busy little girl.

She is very tired this week as she has got a bad cough and a high temperature but nothing we cannot fix without lots of cuddles and kisses as she has lots of birthday parties to attend to; she has a better social life than mummy and daddy!!

Thanks to everyone at Post Pals who has sent Summer post, we really are very lucky.

Update 30th September 2007

Summer has started school and is really enjoying herself and making new friends. Phoenix is nearly 4 months – time is flying! We are going to Malcolm Sargent House in Scotland in October, just before her next MRI scan. We have all been invited to watch Disney on Ice this coming weekend, which Summer is really excited about. Friends of ours are doing a Charity Party in Aid of Summer and Alder Hey’s Ronald McDonald House.

We would like to thank everyone for their continued support and to post pals for sending Summer’s cards and gifts! She loves it when the postman comes!

Update 12th August 2007

We have been doing a lot of camping lately with Summer and her brother Phoenix, taking them to various VW Shows around the country.

We had a letter through the beginning of last week to say that Summer’s operation to have her central line removed was going to be 2 days later. We were surprised but relieved as we were hoping that it would be taken out before she starts school in September. She was extremely brave as we had to starve her from 7:30 Thursday morning and she didn’t go down to theatre until 4:30 in the afternoon. She was very patient and understandably got bored, but didn’t ask for food once, bless her. We are very proud of her. So the next day we took her shopping and she picked some Cinderella glass slippers from the Disney shop but was more excited about going to McDonalds for lunch! Easily pleased!

Can we take this opportunity to thank Post Pals and all the people who send and have sent Summer cards and parcels throughout her treatment. Summer will continue on observation until further treatment is required in the future. Her next MRI Scan is booked for the 22nd October. We are due to go to the Malcolm Sargent House in Scotland in October too, so we are looking forward to that.

Best Wishes,

Julie, Brent, Summer & Phoenix.

Update 9th July 2007

We have received Summer’s MRI results from last week and we are extremely happy to share the good news that Summer’s cyst and tumour remains stable even after completing chemo in April and she has had no new growth which is such a relief.

Summer is staying well and looking really healthy. She has been enjoying attending a few afternoons at the Primary School which she will start in September.

She is doing a great job of being big sister, we are so so proud of her. She was really brave when we took her back to hospital after having a three month break and the difference is unbelievable – she is so aware of what is going on and is always asking questions.

Thanks to Post Pals for their continued support. Summer loves receiving her cards, they always make her smile.

Update 11th June 2007

We have our new baby! Phoenix Ethan was born on 7th June at 8am. He weighed 7lb 1½oz. Summer is very excited and is besotted with him. She is such a good helper it’s great.

Summer has her next MRI Scan on the 5th July, and then we meet with her Consultant on the 17th July for the results. Summer has been very well since completing chemo and her appetite has come on in leaps and bounds, we are so proud of her.

Thank you to everyone who has sent Summer presents and cards, it really does make her smile and she loves waiting for the postman in the mornings.

Update 6th May 2007

Summer completed her last chemo on 12th April but she required blood transfusions and had to stay in hospital for 5 days afterwards to recover from an infection. The relief of the chemo being completed is strange but wonderful. Summer looks much healthier but is a little confused as to why the hospital visits have stopped. We would like to thank Post Pals for their surprise card announcing Summer had completed chemo we will treasure it forever!!

We have had a meeting with Summer’s Oncologist and he has decided for Summer to keep her central line in for a while longer so that if surgery is required in July to remove the cyst growth, it will be easier for her. More decisions will be made at the next MRI Scan on the 5th July, so feeling rather nervous.

Summer’s baby brother is due in 4½ weeks so we’re very excited now!

Update 3rd April 2007

We have had a mixed month with good news and bad news. Summer celebrated her 4th birthday which was a very special day for all and she thoroughly enjoyed it. She is now very excited about the Easter Bunny coming.

Summer had her ear operation just after her birthday. The brilliant news is that while she was under anaesthetic, they realised she didn’t require any grommets. Whatever was there had resolved itself and the relief was indescribable. We were over the moon!

Summer had her MRI Scan last week and we have been informed that while the solid mass tumour is still stable, we have had no more shrinkage. Summer has new Cyst growth very near to the tumour and it is one that could give cause for concern, possibly surgery. We meet with Summer’s Oncologist and team at the end of the month as Summer is completing Chemotherapy next week after nearly two years (another private celebration) and starting observation. She is to have a kidney function test this month to check on her kidneys now that the chemo will be finished and have regular hearing checks too. Obviously, we have mixed feelings of excitement and fear, but we are staying positive.

Summer’s next MRI scan is the 5th July so we will wait and see what happens next. Fingers crossed. Summer’s baby brother will be about 3 weeks old, so we will be very busy and occupied which will be good.

We would like to thank everyone at Post Pals for sending Summer parcels and cards for her birthday and for all the supporting messages that she has received on her Website. Summer was post pal of the month and it was her birthday too – she received lots of cards and presents, so thank you to everyone who posted to Summer. She was extremely excited and waited for the postman every day!

At the moment Summer is very well, she will probably require blood transfusions at the end of the chemo cycle, but then she will be put on the waiting list to have her central line out which will be fantastic. Summer is already telling everyone that when “Wilbur” (central line) goes in the bin, we are going to teach her how to swim!

Update 2nd March 2007

The last couple of weeks have been very distressing and upsetting for Summer as she has not been happy about going to hospital and having her treatment or co-operating with the hearing tests. She has been so brave throughout all her treatment and is now probably fed up of being touched and the constant invasion.

She completed her chemo cycle yesterday and her blood levels are all low but because she is border line they are not transfusing just yet.

Summer has her ear operation booked for the 16th March just after her 4th Birthday which will inform us of what is in her ear and if they can remove it.

Summer also has her MRI Scan this month on the 29^th March and double chemo the same day, so a very busy month for her and us.

I was in hospital last weekend with a false alarm for an early labour (I’m only 26 weeks pregnant!) I think all the stress is catching up with me, but I have to say Summer was a little super star and has been my little helper all week and is looking after me. We are so proud of her.

Thank you to everyone who sent Summer post, she received some great gifts including: – comic relief ears, some cd’s, a hand puppet and more. It really made her smile.

Update 20th January 2007

Summer is currently in hospital at the moment, she completed her 3 week cycle of chemo on thursday and all her blood levels are low and she needs platelet and hb transfusions. Her temperature also went to 38.6 so they started her on IV drugs for 48 hours. We were hoping to take her on a little holiday tomorrow but hopefully will be able to go on Monday if she is well enough.

Summer is going to be a big sister and is very much looking forward to it! We are having a baby boy!

Update 30th December 2006

Summer had to go into hospital Christmas day tea time but luckily was allowed out 4 hours later with oral antibiotics.

Summer received lots of Christmas Cards and was very excited every morning when the postman arrived. Thank You to EVERYONE who sent Summer post in December. Thank you to everyone at Post Pals who sent Summer a Christmas present and to Summer’s Elf; as it really made Summer’s Christmas a special one and despite being poorly she was still happy and Post Pals made that happen.

Update 1st December 2006

Summer has received a lot of post in November and it made her very happy and excited every morning. She has had a good month, maintained her weight and is still currently having chemotherapy. She will be home this year for Christmas which is fabulous and her next MRI Scan will be 21st Dec 2006. Thank you to everyone who has put a smile on Summer’s face!

We would like to thank all the children at a School in Manchester who sent Summer letters and pictures about themselves, that was lovely. Big thanks to Kate, Despina, Nikki, Cheri & Itsy Dog, Kelly, Charlie beautiful pic, Aamilah & Uzayr, Julie Barett and many more.

Update 3rd November 2006

Summer has had her MRI Results from September – her tumour is still stable but no more shrinkage. She will complete Chemotherapy next April. She has another MRI Scan on the 21st December. She had two transfusions last week and has just come back from a holiday at Malcolm Sargent House in Scotland.

Summer would like to thank Hwee Hoon for her lovely postcards from Singapore, Tibet & Turkey and her bracelet it was also touchy feely. Also thanks to Julie Barrett for the Halloween card and balloon.

Update 1st October 2006

Summer had her MRI Scan last week and we are painfully awaiting her results, we will let you know as soon as we can. She is pretty well at the moment; she is having a kidney function test and hearing test this week before starting her 3 week block for chemotherapy.

Summer received a touch and feel book which she loves and a handbag that you make yourself. Summer loves receiving mail (her daddy is a postman!) and the postcards from around the world are fantastic, so thanks everyone!

Update 21st September 2006

Summer has her next important MRI scan on the 27th September.

Update 2nd August 2006

Summer is still in hospital with a high temperature. She has been given a third antibiotic because she is neutropenic (no immune system). Her bloods have just come back and she needs a platelet transfusion and magnesium infusion together with other medicines. Tomorrow they are going to give her a blood transfusion along with the antibiotics and then she will be transferred to Liverpool Hospital for Chemotherapy on Thursday.

Story written 2003

Simon who is 6 years old, is suffering from Acute Lymphoblastic Leukaemia. He was diagnosed in June 2002, it was a big shock to the whole family being told what the diagnosis was.

During the first week of June 2002 we were on holiday, on a boat on the Norfolk Broads. Who could have suspected the nightmare we were soon to be experiencing.

Simon had been feeling ill for some time, with constant sore throat, or colds. During our holiday Simon was always dropping off to sleep in the middle of the day, for no apparent reason. We thought it was just being out in the fresh air all of the time. It wasn’t until we saw the little bruises that kept appearing that we thought something was wrong.

On completing the week long holiday we took Simon to see our local GP, who said that, after examining Simon and listening to what we had told him, he was 98% certain that Simon was suffering from some sort of Leukaemia. We felt devastated. We left the surgery in somewhat of a panic.

Going straight form the surgery to Peterborough District Hospital we went to the admissions unit in the children’s’ ward. After taking blood and running a couple of tests it was thought best that we were transferred to the “Children’s Oncology Unit” at Addenbrooks hospital in Cambridge.

There we stayed for a long 6 and a half weeks.

Update March 2007

Simon is now doing extremely well; he is now only seeing the consultant every 2 months. He is gradually catching up at school. He is now beginning to live a normal life again. He also now has a little sister, Lilly, who is about to celebrate her 1^st birthday. Simon will be 9 years old in April.

Thank you for all you did for him during his illness and for all the support given by people through the site.

Update April 2004

Simon went into hospital in April with pneumonia, his father, Martin was then admitted with the same thing after collapsing on the ward visiting Simon. Father and son are now on the mend again and Simon is back at school.

Update Summer 2003

Simon has now been having treatment for just over a year and is responding quite well. His treatment has been intense but he has tolerated it very well for someone of his age.

Story written 2007

Sammie was diagnosed with Cerebral Palsy at the age of 2 when I noticed she wasn’t developing as quickly as other children her age. We thought it was because she was born 8 weeks early.

Sammie eventually learned to walk but walked on her toes and has to wear splints and special shoes. She had an operation at 8 to stretch her leg shorter than the left leg and now wears a built up shoe.

She now has a curved spine and suffers from low self-esteem. Sammie can not run like other children and often feels left behind, but Sammie still has a brilliant sense of humour and laughs at herself.

Her favourite thing to do is craft, especially if there is glitter involved and she loves to make cards for people to cheer them up.

Update 1st July 2009

Due to personal reasons unrelated to Post Pals we are having to “Move on” from Post Pals for the moment. Thank you to everyone who has sent post and supported us.

Update 6th June 2009

We are still fighting to get Sammie a place at special school and although she is suitable we don’t have a place as yet. She is much happier in herself I think and it is just knowing that she will not have to stay at the old school that has really made her happy.

Her foot is all healed now and she can wear shoes without her big straps. She is getting so grown up now.

Thank you to all that took part in the card blog challenge and sent the kids gorgeous cards and gifts, it really does make a huge difference to a child’s day. Thank you also to Lorraine for your lovely letter and for the wii game and the DVD. I am still watching it and know nearly every word. Thank you to Catherine for the sparkly flowers, and thank you to Alexandra for my images – I will be very busy.

Update 30th April 2009

Sammie is still struggling at school and we have made the decision to request that she goes to a special school. I am hoping that here she will get the help that she needs but we still have to fight for a place for her. Obviously she is very apprehensive about changing school yet again but fingers crossed it all goes smoothly. We have a meeting about this in May and hopefully the move won’t be long after this.

Sammie has been back to hospital and she has to go back again as her leg is now turning in and causing her to trip herself up, but she is now wearing proper girly shoes and this has pleased her no end.

I haven’t really updated the blog for the kiddies due to PC problems and loosing lots of the pictures I had taken when it went in for repair, but I wanted you all to know they have been receiving mail and a big thank you to everyone who has sent her mail. I think without it she wouldn’t have got through these last few months, but at least she is a bit happier now and this is all that matters to us really.

Update 10th March 2009

I am so sorry that i have not updated the page for a few months but i didn’t really have any answers and we do now.

Samara has had her pot removed and the operation has been a success. She has to wear a splint on her foot for a while until it heals fully, but she will be able to wear normal shoes and her foot looks really good. What a difference this has made to her.

She has to wear a big pair of trainers at the minute as it is still a bit sore but you cannot really tell that she has had anything done to her.

She had trouble with the walking sticks in the snow and kept getting her foot wet but she is without them now and can walk alone and is enjoying the fact she can get her foot in a shoe. She goes back to see the specialist in April and hopefully he will sign her off.

I just wanted to say a huge thank you to each and every person that has taken the time to send them post and although i didn’t manage to take photos this time, i promise i will from now on. It has just been very hectic and things have finally settled down. You have kept us all going during this very hard time and we really appreciate it, as do the children.

Big hugs to you all x

Update 6th January 2009

Samara had an operation on her foot the same day as Teej had his. She has had some bone removed from next to her big toe. She is able to walk on a special heel they have put over the pot but has to use crutches. She has not left the pot alone though and it is all falling apart – curiosity had got the better of her and she wanted to see what it looked like and now it is just a mess. She will go to the hospital tomorrow to have it seen to, I am hoping that they don’t put another pot on and just strap it up instead.

She has picked out some boots and some sandals for summer already. She has always had problems with her foot and now it looks so much straighter she will be able to wear shoes the same as everyone else’s. She has not gone back to school and will probably go back next week if she gets the all clear tomorrow.

She has been very down about it all and very quiet. She likes her freedom and being able to go where she wants in the house, but this has stopped her from moving from room to room and she is very impatient. She wants it all over and done with and hopes that the bullying will stop because she will be the same as everyone else. No matter how much I tell her she is perfect she doesn’t believe me.

Thank you to everyone who sent her letters, cards and gifts. She had a wonderful Christmas and it made her feel special that people know about her and sent her post. The generosity of people always amazes me, a small letter can change the day of a child and she had plenty of them and plenty of smiles to go with it.

Update 18th December 2008

Sammie’s operation has been cancelled as they had messed up big time. They are now both going in on 22nd December and fingers crossed they will both be home for Christmas.

Sammie will hopefully just stay one night if everything goes ok, but TJ is down for a few days depending on his amount of pain. Sammie is having her toe straightened and her bone shaved and TJ is having both his legs straightened and his tendons released (non weight bearing for a full 6 weeks).

So it looks like it’s going to be fun and games for us all again this Christmas.

Update 1st December 2008

Sammie is still having a tough time at school and is very upset about it. She goes in to hospital for an operation on the 11th December to straighten her foot up and is very excited about this. She has picked out some new boots already and some sandals for summer! As her mum I am the more nervous one I think!

The bullying at school has made me wonder if I should take her out of school and home school her, but then she wouldn’t get the social skills she needs. The other alternative is to put her in a different school, but this is her third high school and I think we just have to keep her there and try our best to help.

The amount of post she has received this last month has made her feel really loved and she loves reading about what you are all up to. Her blog is getting full of pictures now and she keeps going back to look at it and still cannot believe that people have taken time to write to her.

Post pals has had such a huge impact on Sammie, she is normally brushed to one side by everyone and for her to know that people care about her makes her feel special. A simple letter or postcard can change her day and brighten her world no end. Post Pals has been a God send, thank you to everyone.

Update 1st November 2008

Sammie has been having a tough time of it lately, she doesn’t understand why she has to grow up and why her body is changing and is finding it very hard and spends a lot of time in her room at the minute.

Sammie is also due to go in to hospital for an operation to correct her foot and she is surprisingly looking forwards to this. She will be getting some new boots and shoes soon as the foot is too bent to wear nice shoes at the moment and she has already picked out what she wants.

Sammie has received some lovely things through the post these last few months and a lady from Holland, Nicolette, has made her a gorgeous quilt with kitties on it and it is pink to match her room.

I have set up a blog for all the children so that people can see how happy they are when they receive post and there is thank you’s on for everyone. She loves the idea of being able to put pictures of herself and her brother and sister on the blog and knowing that people can see her. The link is listed above with Samara’s details.

Thank you to everyone who takes the time to write and send her post as she smiles and feels really special with each one she opens.

Update 10th September 2008

Samara has now gone back to school and this term she has a one to one and has settled in much better.

She has an appointment for a scan at the end of the month of her tummy. This means more poking and prodding, but it is for the geneticist. We still have no answers but at least they are looking.

Thanks this month to Becky and Tess.

Update 7th August 2008

Samara has had a good month in herself, she seems to be building up her self esteem and her confidence is coming back.

We still have not heard anything from the doctors about her genes so we still don’t know, but they say no news is good news and we are keeping our fingers crossed it wont be to long now.

Sammie would like to thank the person who sent the hama beads, she was very pleased with those. She was so excited getting lots of post she cannot remember who sent them, so I am sorry about that but if you are reading this, she loved them as they glow in the dark.

Update 1st July 2008

Sammie has had a busy few months. She has been to see a special doctor who just deals with genes and she has been prodded and poked, had x-rays, bloods taken, you name it she has had it. We are still no better off with finding out any answers but it all takes time and as they say no news is good news…

Sammie has also been to see the bone specialist who wants to shave the bones on her foot a bit so she can get a pair of shoes on. Her toes are curling out the wrong way and she is in a bit of pain with them. We have agreed to this and she is on the waiting list and I’m hoping she will have it done while they are on holidays as I don’t want her missing too much of school. Funnily enough she is looking forward to it, as she wants some ankle strap sandals because she has never had any.

Sammie has put on some weight and this is now a big issue with her so we have an appointment with a dietician to see if there is anything we can do to encourage her to eat a bit more. I have hidden the scales so she doesn’t keep weighing herself, she just wants to put weight on and in her words “be normal” but I have told her she is gorgeous as she is.

Sammie is still having a tough time at school and doesn’t seem to fit in no matter how hard she tries, but she has decided that what other people think doesn’t matter and she is trying her hardest at everything now. We held her annual review here last week and her scores are going up slightly so that’s a plus for her and she now does her P.E. lesson without a helper and is holding her own.

Sammie has started to get more creative and has been using fimo. It is similar to modelling clay but you bake it when it’s done. She also loves hama beads – they get everywhere but she makes some beautiful things and to her, crafting is the best thing in the world.

Thank you to everyone for helping to make her smile. Life can be very hard for her but just knowing that people care makes a very big difference.

Can I just put a little thank you here for Shaleise too? She is really pleased with all her letters, cards and gifts, and she has asked me to thank everyone.

Since Sammie has been on Post Pals she has had so much post and it has helped her confidence and made her a totally different girl. No matter how bad her day is she will come home and sit and read her letters and cards. She has got a massive box full now and sits reading them all the time. She is even getting emails and one in particular has made her day so thank you Julia and Sophie. Although she can’t reply by email she will write, she doesn’t feel so alone now.

Samara has had so many hand made cards this month we have had to put a string up to hold them all, and they are all beautiful, thank you.

Samara has had 3 lovely letters and although it takes her a while to finish her own letter she is going to write back to everyone who has written to her.

Thank you so much to Karen who has sent her a watch, she has tried very hard to tell the time and is almost there. What a lovely thing for you to do.

Update 15th April 2008

Samara has been having a really bad time, so sorry for not updating this page for a while, but I have been focusing all my attention on her and she seems to have finally turned a corner. She has been happy, smiling and cheeky, back to her normal self and I have to say it is such a relief.

We have decided not to let her have a big operation as there was a good chance she would be left unable to walk, so we really didn’t want to take the chance and go through with it. When she is older, if she still needs it doing, it will be her choice.

I wanted to thank each and every single person that have sent her letters, gifts and postcards these last few months while she has been down. There is too many to name here, but I just wanted you all to know she is very grateful for it and her bedroom is now full of post and she sits reading it everyday. She even got a cross stitch kit which she was over the moon with.

She joked yesterday that she could wallpaper her room with all her cards and letters now and that it has made her so happy. When you think back to how upset she was a few months ago I never thought she would be back to her normal self and post pals have helped a great deal with this, by showing her that people really do care and are genuine.

Sammie is finally happy at school and the bullying seems to have stopped. We are trying to teach her to tell the time now and she is so funny with it – she said I want a digital watch then I don’t have to bother. She also had some more good news, her film has won another award and she won another amount of money which again she has put in her bank account for when she is older. She wants to be a vet’s nurse and is taking a real interest in animals at the minute.

Thank you once again.

Update 30th January 2008

Sammie has had a brain MRI and stayed awake for it, she didn’t like it very much but at least we will get some answers. She has been this morning to see the specialist and he wants to break both her hips and reset them with pins in, but it will mean almost a year of her legs and then it may not even work. Sammie would love to have this done as she thinks she will be normal afterwards, but we have some serious thinking to do before we reach any decision.

Sammie’s 12 year old best friend has died and she went to the funeral. I felt she should go to get some kind of closure and she said it was nice hearing about her growing up, but she has been very upset and asked a lot of questions. I think I have explained it the best I can, but she is still very upset about her friend and says she will never forget her and I have encouraged her to start witting her feelings down.

Fingers crossed that next month is a happier one for all of us.Due to the unhappy time Sammie has had lately, this site has been a Godsend at cheering her up and making her smile, so thank you to everyone that has taken a moment of their time to do this; it really does make a huge difference.

Update 3rd January 2008

Sammie started the month sad because she lost her Nanna, but with the excitement up to Christmas she soon got over it. She has had the best Christmas ever and was showered with gifts and cards and was so impressed that, in her words, special people had bothered to send her a gift and a Christmas card.

She has met her aunty and has been to stay at her house and she was telling her aunty how special people had sent her cards and gifts and said they must be people that are angels!

She got so excited on Christmas morning she didn’t feel well at all. Her pile of presents was huge and she was still opening gifts at 1pm. She said she took her time as she wanted to appreciate each and every thing she got.

Sammie wants to thank each and every person that sent her a Christmas gift. She had a really good time and loved being part of Post Pals this Christmas.

As her mum, i have been overwhelmed by the kindness and generosity of people we do not even know. Sammie thought she was alone in her disability and has really enjoyed the last year of receiving letters and gifts from people and this has helped her self esteem no end, thank you. Thank you to everyone.

Update 2nd December 2007

Sammie has had some good news. The animation she made won a children’s BAFTA and she has also won another cash prize. The school has asked if we would mind them showing it and putting it in their newsletter, so we said yes. If it highlights disability, I don’t mind where it goes.

Update 30th October 2007

Samara has had an imp month – which means she has spent most of it in her room having time out! She is growing up so fast and has been so cheeky. Whilst most mums would be annoyed at the change in behaviour, to me this proves that she is happy, confident and back on track. She has even had a detention…

Her health has been really good and she has also put on more weight, so things are on the up for our little imp!

Thank you everyone who sends Samara post, it has really changed her life getting letters and cards from people she doesn’t know and some from far away. It has restored my faith in people.

Update 10th October 2007

Sammie is learning to play the oboe. It’s meant to be a nice sound, but it’s awful! The parrot even joins in with her!

Sammie has been to see the specialist again. She will have to go for a brain scan and to see a surgeon as her feet are curving, so it’s looking more and more likely that she will need yet another operation.

The film that Sammie made has been nominated for a BAFTA award so she was really excited at the thought it might win! Fingers crossed it will! Unfortunately we couldn’t make it all the way to London as there were no trains home when it finished, but she doesn’t mind.

She is really enjoying her new school and they are so good with her and are always phoning me up and asking my opinion. She has even made some friends and is so happy, the difference in her this month is amazing…

Thanks to Becky for writing to Sammie and thanks to Julie whose cards always make her smile.

Update 17th August 2007

Sammie is going from strength to strength and has put on some more weight now, so things are looking good. She has now been allowed to take Kei-Kei to agility and help train her up and she is even trying with Foggy now (Foggy is a dog we are training up for Canine Partners who train dogs up to work with disabled people). Her behaviour is getting quite impish again so I know she is back to herself and the Sammie we all love and know…

We are facing yet another battle this time for a dropped kerb but we keep going and Sammie now understands we do this for her not because of her.Sammie also had her eyes re tested and needs some new glasses, so she was happy too…

Thank you to Becky who always makes Sammie smile and a thank you to Helen for the crafting things she sent Sammie, she had a great time doing them.

Update 1st July 2007

Samara has now been removed from school and is getting home schooling until we can find another school to taker her. She was suffering from bullying and seemed to be relieved that it is all over now…

For the first time in months she is now eating and sleeping so in my heart I know we have done the right thing for her, it’s just a shame it had to come to this…

Samara is a very happy little girl at the minute, and we had a letter from London to say the animation she made “The Wrong Trainers” has just won four more awards making that five in total. She got a cash prize; bless her she told me she was saving it in her bank account for college…

Samara has had lots of letters and its great knowing that she isn’t alone and people from all over the world are witting to her.

Update 26th June 2007

Sammie is having a bad time at the moment and is very upset, but I am trying hard to make her feel better. She is going to be home schooled for a while.

Thank you to Sue for emailing me and Sammie as her kind words were really nice. Sammie appreciates every email she receives, so thank you to all the people who have taken time to email her – it makes her feel really special.

Update 10th May 2007

Sammie had an operation yesterday to remove adult teeth from her bones in her mouth. She was in at 7.30am and didn’t get home until 8pm. Her face was very swollen like a hamster and she is very sore. She is in her room chilling out but is bored…

The specialist phoned me up and told me Sammie’s results from her MRI scan had come back ok, so she has got the all clear for another 2 years. This is brilliant news because it means she isn’t getting any worse.

Thank you to our friend Becky who is keeping Sammie’s hopes up. Again, I think this service is brilliant and to know people out there really care is amazing, thank you for your help in making my child feel extra special.

Update 7th April 2007

Sammie went for an MRI scan last week. She was very nervous and they offered to make her sleep while they did it and she told the nurse that she was brave enough to do it awake! She did and it went really well and we should have the results next month.

I was cutting my hair for Canine Partners (a charity that trains dogs up to work with disabled people) as I was getting sponsored for it and Sammie decided she would have her hair cut too. This was a big decision for her and I didn’t think she would do it, but she even shamed her big sister Liddie in to doing it. We cut off 8 inches of Sammie’s hair and Liddie cut of 7 inches. We raised a total of £174 and we are sending the hair to Little Princesses, and she looks so gorgeous with shorter hair…

Post Pals has made such a huge difference to her. She was so tired of just getting appointments through the post and it does make her smile and feel important. Thank you for her birthday cards and gifts and a big thank you to Becky Bulter who has been witting to Sammie and sent her a poem book, she loves it… The sparkly stickers were also a big hit, and thanks to Julie who made an Easter card for them all with chocolate on. They don’t want to eat them – they are that nice!

Story written 2006

After months of hospital stays, EEG’s, MRI scans, and blood tests, we were given the diagnosis of Temporal Lobe Epilepsy, caused by a lesion, probably a cyst, in his left temporal lobe.

Sam continues to have up to 20 seizures in any one day, causing him to feel tired and dazed for much of the time. His current medication is not having any effect on the episodes.

We had our first appointment with the neurologist at Great Ormond Street on Tuesday, and he has suggested a change of medication, a further MRI, and an overnight, with a view to possible surgery to remove the cyst, which is scary, but I think we would consider anything which may help at the moment.

Sam attends a mainstream playgroup and a special needs playgroup at the moment and is doing so well that in September he will be beginning at a nursery 5 afternoons a week, supported by a 1:1 teaching assistant due to his epilepsy and personal care.

Sam is such a loving and loveable little boy, full of cuddles and his is so happy, but he can also be a monkey, full of mischief and giggles. He is loved to bits by his brother and sister, and they worry a lot about Sam.

Sam has Complex Partial Seizures, lasting around 1 minute, which are very frightening to watch and we have not got used to seeing Sam experience them. He looks terrified during a seizure, but copes amazingly well, and seems to recover quickly from a seizure.

We are hoping that over the next year, Sam will become seizure free, one way or another, and we look forward to that day. Until then we are taking each day as it comes. Epilepsy is so unpredictable, it is hard to make plans for the future, but giving Sam the best chance we can and seeing Sam happy here makes it all worth waiting for.

Update 29th January 2011

Sam is having an up and down month. He loved Christmas but found it very stressful and it was his 8th birthday on 1^st January – thank you so much for all the gorgeous presents and post he received, we were blown away by your generosity again!!! It is not ideal for someone with epilepsy and autism to have a birthday so close to Christmas, its too much too close together, so we decided next year we will save his birthday until a couple of weeks later so its better for him and he has time to look forward to it.

Sam is getting by day to day and making good progress with his speech and communication, but he gets really frustrated sometimes and lashes out which we can understand, but it is hard to cope with when he shouts and screams constantly. Sam still wears a nappy in bed which he absolutely loathes and he gets so angry each night. We’re trying to think of ways to encourage his dryness, but apart from limiting his juice we are stuck!!! And the sleeping isn’t great at the moment, I think we need to look at the meds again soon for his sleep, and the others too as he has grown so much they may all need the dosage changed.

Anyway hope you all had the best Christmas and New Year possible and big hugs to everyone who has posted anything our way, it is much appreciated, they still get so excited!! Take care xx

Update 30th October 2010

Sam is coping OK with everything so far this winter. The winter is generally a hard time for him when he becomes a bit down and depressed, as he loves getting out and about in the fresh air, and as the nights draw in he finds it hard to cope. Last year he got measles which was a terrible ordeal for us all to face and he did not completely recover until April. This still haunts him and he often says ‘measles is gone now, have I got spots now or are they gone?’.

He is not sleeping great and finds it hard to drop off, but he is frequently awake until after midnight, which is wearing on us all. Sam’s reflux seems to have returned with a vengeance and occurring daily. His seizures are still under control but could be occurring, manifesting themselves in a different way. We are due to have another appointment at GOSH in the New Year.

Many many thanks to all who have sent Halloween gifts, the children have been overwhelmed with your kindness. Thanks to Lauren, S.R Gilligan, and many others. Sophie and Sam loved the bags and cards and even Joe was pleased with his Halloween gifts. We have been making the Post Pals Christmas cards pictures and enjoyed doing them a lot.

Happy Halloween to you all and take care xxx

Update 2nd October 2010

Sam has had a great summer and is enjoying being back at school. This is usually a very hard time of year for Sam, and he begins to go downhill in both his health and behaviour during the winter months, so we are all keeping a close eye on him to make sure we notice if he begins to show signs this is beginning to happen. We are not sure why this happens – last year he got measles in December and was unwell for 2 months beforehand too, in fact he did not get back to normal until the April following this. He seems very depressed in winter as the weather gets colder, and he can’t run about as much outside due to the bad weather.

At the moment he is fine though, we had results back from last EEG in May, and it seems the seizures are under control at present, which is great news.

So many thank you’s for all the wonderful post we have been getting, we are so grateful. We have had Legoland tickets from Post Pals, and letters and gifts from across the globe. Some great balloons arrived in the post yesterday, the children love opening the post and on hard days it really brings a smile to their faces.

Times are hard here and everywhere else and there’s no spare money for treats what with Christmas coming, so we really appreciate your kindness.

Sam is really desperate to go on a plane and we are lucky enough to have a friend who has arranged for him and I to go on a short flight in October, so we are really excited!! Sophie is loving Twilight at the moment, and Sam is into Toy Story, he loves the RC car and Woody goes everywhere with him – he has lost his boots and his hand and he is still Sam’s favourite!!

Hope all Pals are doing as well as possible at the moment and thank you again.

Update 10th June 2010

Sam and Joe and Sophie have been getting lots of super post from all over the world recently, with some amazing gifts and cards from Marjolijn from the Netherlands. Thank you SO much. The children are over the moon with their cards and presents, Sophie loves to hear about your guinea pigs and Joe was thrilled with his World Cup book. Sam loves his instruments too!!

They also got some gorgeous post and gifts from Karen Standy from Bedfordshire. Thank you so much, Sam loved his musical toys and Sophie loved the photos of your lovely pets.

Sam got a postcard from Darwen, Australia, from Andrea Holmes-Chadwell and also a gorgeous letter from Sean in Ireland which he made himself. Thank you for all your wonderful kindness, we really appreciate it.

Sam is becoming easier to handle, but his autism makes it hard for him to have compassion for other people, but he is very loving at times. He struggles with his emotions and quite often is very very happy or very very angry for no apparent reason.

Sam has been in Great Ormond Street for 3 days to have a 48 hour EEG and other tests to see if he is still having seizures. He hated being attached to a machine with wires glued to his head for 2 days and nights, but he really tried to be good. He still has his head covered in glue 3 weeks later so I’m going to have his hair cut short! He hates his hair being brushed now as it hurts him so much. We are awaiting an appointment to get the results of the tests.

Sam also has to have a blood test next week to check his levels as he is on risperidone, I am dreading this as Sam hates needles.

Sophie is doing really well and has her first ice skating competition on 5th July, and her grade 1 piano and grade 2 trumpet on 6th July. So she is a busy girl at the moment. And it’s her 10th birthday on Sunday so she is very excited too!!

Joe is looking forward to the World Cup and has planned his life around England’s games!!

We are going to the Starlight Wish Party on 29th June; we are lucky to be invited and can’t wait.

We also hope to come to the Post Pals party on 26th, and hope to meet lots of other Pals there.

Thank you to Viks, Kate, and the team for all your hard work, it means a lot to us.

Update 8th March 2010

Sam has had a good February on the whole and finally seems to be recovering from the after effects of the measles. He is tolerating more music and songs, and is not completely distraught every time anyone sings a song or turns the radio on.

He is slowly getting back to the way he was 3 months ago, enjoying himself playing on the computer and with his new Scooby Doo House toy.

We have had a couple of appointments at GOSH, the first to see a clinical neuro psychologist, who assessed him for 4 hours and put his ability at 3 years ten months for one test, and up to 5 years 10 months for another, with the rest falling around the 4 years 8 months level. This is really positive as previously Sam was assessed at the level of a 2 – 3 years old on these tests. He wasn’t too happy sitting for these tests and I think he could probably have done better if he was more cooperative!!

On another visit Sam had an MRI Scan to see if there was any change in his brain following his temporal lobe resection which had caused his recent change in temperament. The results were clear with no swelling, regrowth, or pressure apparent, so that is good news.

That means the reason for Sam’s recent downturn is probably related to the measles, autism, epilepsy or any of the above. He has been referred for an overnight EEG to assess if there is any underlying electrical activity which could be causing Sam some discomfort. This has come through for the 18th March, so we will see what happens then. We are slowly ruling out each possible factor, and trying to discover the reasons behind why Sam is such a whirlwind of emotions at the moment.

As it happens, Sam seems to be finally getting better on his own, though we don’t know why? He is being really loving and affectionate, and I feel we have the connection back that was lost while we were all trying to cope with measles and all its side effects.

Many many thanks to everyone for all the lovely post the children received recently. Joe got a book voucher all the way from Houston, Texas, from Mary Johnson. Sophie has been given a gorgeous necklace making machine for Valentines Day, and a paint your own jewellery box. Sam has got a fab Doctor Who book, handmade card and bookmark from Alison.

We are so grateful for all your kindness; the children get such joy from Post Pals. We have also had many cards and postcards sending love and kind thoughts – many thanks to everyone who has thought of us.

A lot of pals are heading through hard times at the moment and our thoughts are with them and their families.

Update 5th January 2010

Sorry to say that Sam has not had a very good Christmas at all as he came down with measles on 19th December. This was after being really sad and angry for most of December (which was obviously when the measles was starting). He had a horrible itchy rash, ear infection, conjunctivitis, fever, sleeplessness, and was really angry and screaming a lot as he didn’t understand why he felt so ill. It was a quiet Christmas for us, as we didn’t leave the house for 2 whole weeks.

Sam only started to get better on 1st January. He finally started to sleep a little, but he is still very up and down emotionally, easily upset and cannot stand any loud music/songs. We can see he is worse because of the autism, and not being able to understand why things are happening.

He has, in general, not coped well with winter this year. He is struggling to cope with school and the demands placed on him. We have got an appointment in February at GOSH, to arrange an MRI scan to check there is no change in his temporal lobe, new growths or pressure etc, so we can rule that out, and try to understand him better and why his emotions are such a roller coaster.

The doctor recommended a trial of Risperidone to calm his temper, so we are trying that at the moment. He has also been prescribed Chloral Hydrate for those nights when he awakes at 1am and will not go back to sleep, although thankfully these are not the norm as they were while he was ill over Christmas.

Sam’s birthday was on 1st January and we kept things quiet. We just went for lunch at the Harvester, followed by a long walk in the forest, so Sam could get some fresh air and exercise.

He did cope well with the day and opened some lovely post – many thanks to everyone who sent both Christmas and birthday gifts to Sam, and Joe and Sophie. The knowledge that people all over the world are thinking of us really helped this Christmas, as it is probably the hardest one we have faced.

Joe and Sophie did not get to go out and do a lot, as we were waiting to see if they were going to come down with the measles, but thankfully they didn’t get it and they are all back at school now.

We wish all the Pals, volunteers and families, a very Happy and Healthy New Year, and thank you again to all the kind people who sent post for the children and the Schwauer family from the USA. It was lovely to see them open the parcels and cards.

Update 28th November 2009

Thank you to all of you who have sent post this last month, it is much appreciated. I am keeping the presents for Christmas morning (if I can!) but Sam has loved opening the craft pack he received and we are having a crafty evening in the week, making some cards and decorations.

Today we went to the Winter Wonderland in Hyde Park, and saw the circus, did ice skating and lots of rides. Sam lasted well, and apart from a couple of small moments he held himself together, even going on some quite hair-raising rides and a bungee jump!! He usually gets a bit unsure and nervous in crowd situations and with lots of noise, but today he coped with the tube and taxi without too much fuss.

I told Sam that Father Christmas can see him through the burglar alarm sensors, and see if he is being good, which made him stand there staring at the corner of the room for 10 minutes, talking to ‘Father Christmas’, and it works if I remind him and takes his mind off his temper sometimes – shame it won’t work after Christmas!!

Merry Christmas to all, hope you have the best Christmas possible and a peaceful New Year too.

Update 1st November 2009

Sam has had some lovely post this month, with lots of emails from all over the world, some great postcards, including one all the way from Japan!! He’s had some super cards too. He loves opening the card and he gives it to me and says ‘What do this say?’.

Thank you so much for the wonderful Chinese paper lanterns, we set them off last night and they looked stunning, floating away slowly into the night. We could see them for absolute miles and miles, I wonder where they ended up? Thank you too for the Snowman book and CD, another of Sam’s obsessions, I know that book off by heart now!

Sam has stopped wearing nappies at night time, which is a huge step for him, not too many accidents either! Well done Sammy!

He went to the opticians yesterday and we were laughing because when he was looking at the chart, he had to name the pictures and he said ”House, Car, Flower, Plane”, then he saw a kettle, and he said ‘Nice cup of tea, Car,” etc, the optician wasn’t amused when we laughed, but that’s Sam all over, doing what he can to communicate, and he usually makes himself understood in the end, even if he’s not using normal words!

Sam had his first trick or treating experience last night and we think he really enjoyed it, dressed as a pirate.

Hope all the other Pals are doing as well as possible, this is a hard time of year, and we are thinking of all of those facing hard times.

Update 29th September 2009

Sam has received lots of postcards and notes from the US recently, and a big thank you to Kim Craft who sent Sam a great Fireman Sam Sticker Book, he has had a lot of fun doing the stickers and sends a big hug. Also, thank you to Margret from the USA for her lovely postcards for Joe, Sophie and Sam.

Sam has settled in well to his new class at school, and he is amazing us with his ‘writing’ which is random letters jumbled together on a page, to which he says ‘What that say?’ He is really keen to get reading and writing and the speech therapists etc are saying he is functioning at the level of a 4 year old, so he is doing really well, and has made good progress.

Most importantly Sam is having a happy time at the moment, with no major problems. He still uses Melatonin at bedtime to help him drift off to sleep, and he is still the most stubborn boy in the world, but there are definite signs he is maturing, and becoming a little less like a terrible two year old!

Sam’s autism is the main issue at the moment and this is something he will, and we all will have to learn to live with, but he is a healthy little boy at the moment, free of seizures, and long may it last.

Thanks to all the lovely people sending postie to all the Pals, you are making someone smile every time you send something, which is an amazing thing when times are hard.

Update 18th September 2009

Well Sam went up to the next class at school in September and he seems to have settled in well. He says ‘I love my teacher!’. He still needs Melatonin to help him get off to sleep, which is the only thing to have worked, and we are so grateful, as it means we have some normality with the other children.

When Sam didn’t go to bed our whole evenings were taken up with him. One of us had to lie down on the bed with him, sometimes for 3-4 hours, and then he would wake up again by 3-4am, and it was really hard. Now he is asleep by 8 or 8.30 pm and we have time to be with the other two for an hour or two before they go to bed, which is lovely. Sam is still often awake by 5am but you can cope with anything if you’ve had a few hours interrupted sleep!!

Sam has really made progress in many areas. His speech is coming along well and his level of comprehension is becoming better. He is able to understand so much more now. I feel we are so lucky to be able to say this, as a couple of years ago things were so up in the air and we didn’t know what the next day would bring, if he would be having 20 seizures or none overnight, and if he would ever be able to use a toilet or not.

Sam’s autism was diagnosed last year and he has many typical autistic tendencies, such as flapping his hands and bouncing, and he cannot cope in many social situations. He started Beavers 2 weeks ago, and he is settling in slowly, but after half an hour he says ‘Can we go home now?’ so we are letting him do it at his own pace as he is not used to being in a mainstream group, and I feel he is able to do this, in his own time.

We have tried a couple of medications such as Straterra and other ADHD drugs but they didn’t have a positive effect and made him depressed. I am glad we can now rule these out and work with Sam to help him control his own feelings and behaviour.

Christmas is around the corner and I am sure he will get lots out of it this year.

Sending love and hugs to all other Pals and families, some of whom are facing hard times, as we have done in the past. Thinking of you all with love xxxxx

Update 30th May 2009

Sam has been very up and down this last couple of months with his temper being very erratic and he is being exremely loud and shouty! The teachers think this has a lot to do with his brain surgery and the after effects of actually going into his brain, along with his autism and frustration from not being able to communicate as effectively as he wants to. We had a behaviour specialist in yesterday who said she thought he was capable of doing really well, if we can get past the frustration and all the bad tempers. He spent the hour telling her ‘Go home now! I finished now!!’ which I can understand as he is sick of being pulled around and told what to do, but he did sit nicely in short bursts and she thought he did well. We are hoping she will be able to go into school on a weekly basis to offer help and build a relationship with him. We’ll try anything to get throught to him!

His sleeping pattern has been awful of late, he has been waking up at 1 or 2am and ready to face the day. We just can’t keep going like this and I am seeing the school doctor on Wednesday to try and get something to help him through the night, as we are all too tired and ratty to cope with anything!

Sam is still just Sam though with his funny cheeky personality and (most of the time) we wouldn’t change him at all! He is glad the weather has turned at last and is loving the garden and mum’s swimming pool. Last year he wouldnt go in it, but this year he loves it. Maybe that’s autism for you, or maybe that’s just kids for you.

Update 1st March 2009

Sam has had a good month, with lots of cards from Post Pals all over the world, many thanks to you all for sending your best wishes to us, we appreciate it loads.

Sam has become a lot more vocal in his wants now, saying “I want go there!” or “I want play that!” so it is great to see his personality developing, but also hard as he is so determined to get his own way, and we have to spend a lot of time explaining things in a simple way he can understand.

Sophie broke her arm for the third time last Monday and we are beginning to think she could have a problem such as Hypermobility. Poor thing had to spend two nights in hospital and now has a pin in her arm. We are seeing the orthopaedic surgeon tomorrow and will have to pursue this, as things are not looking good – she broke it tripping over while getting off a bed?? All her breaks have been while falling over, once while falling from an armchair onto a carpet! She would love some extra smiles as she is finding it hard being a bit left out, as we have to keep Sam busy.

Take care and sending all the other Pals our love xx

Update 1st February 2009

We had a busy Christmas and we send so many thanks to all the Christmas elves and everyone who sent Christmas post to the children as they really had fun opening the presents and cards.

Sam had his 6th birthday too and we went to the ball pit with a few friends and cousins which he loved. He got some great birthday post too, big hugs to you all!

Sam began a trial of the medication Equasym just after Christmas, which was recommended to us by two different Great Ormond Street Departments. The drug is a reuptake inhibitor, which is supposed to slow down Sam’s reaction time by making the messages to the brain take longer to get there. For most children with autism / ADHD, this is supposed to have the effect of improving concentration and helping to get more out of school. However in Sam’s case the medication just made him very sad. He went from being bubbly and extremely bouncy to being unresponsive and depressed whenever he was given the medication. His teachers at school noted he did a lot more flapping and his processing delay was far worse. We gave up after 5 days and he is back to his usual self, which is great to see. We thought it was worth a try to see if Sam could be helped to maintain his concentration at school, and to minimise his mood swings, but this is not the case.

We have all got this rotten cold and cough going around, and we are having a day indoors today, with Sam watching Ratatouille, Wall-e, and playing on his V Smile all day. Joe and Sophie are a bit unimpressed by this but if Sam is happy then we all have a bit of peace. Joe wants to get the wii out soon, so I am taking Sam upstairs to read some books.

Update 2nd January 2009

We had a lovely, busy Christmas, but we have all succumbed to the coughs and colds going around, so we haven’t been up to much else! Sam enjoyed opening his presents and got some super Christmas postie and i have sent some pictures for the gallery. Sam’s current favourite DVD is The Snowman, and he was overjoyed to get the book of the DVD! Joe and Sophie also got some lovely postie, Sophie got some lovely art stuff and girlie bits, and Joe got a great wrestling calendar to name a couple of things. Thank you so much to everyone who sent post to all the children!

Sam’s birthday was yesterday so he had yet more presents and cards, and some lovely postie including lots of cards and a lovely soft Wall-e toy from Julie Barrett, which he slept with last night!

Sam finds the holidays with no routine a stressful time, and as we have all been unwell and unable to get out, it has been harder for him to cope, so we will all be glad when term starts again.

Sam was officially diagnosed with autism and ADHD last month, and we have started a trial of Equasym to see if it helps his attention span, but this was stopped due to having a bad cough and cold, but we will be trying it again once he is better.

I would like to wish all the Post Pals staff, volunteers, helpers and families, a Happy and Healthy 2009, thank you so much to you all for including us in your thoughts.

Update 23rd October 2008

Sam enjoyed his summer holidays, even though it was hard for him to understand why there was no school, and even harder for us to find ways of entertaining him! He attended the summer play scheme run by the council which he loved doing. This was two days a week, which gave us and him some much needed time off to regroup!

We went away to Somerset for a week and it rained every day, but we had fun. For some reason Sam refused to go swimming, we cannot explain it, his autistic side is becoming more and more apparent and he feels really unsure in unfamiliar situations which can be hard for all of us. For example, we are taking the children out for a meal on Boxing Day, and in order for this to go smoothly we are having to do a couple of trial runs so he is familiar with the restaurant and is happy to be there on the day.

He remains seizure free at the moment, although there are no guarantees this will not change. He still has reflux and is frequently sick, vomiting up everything in his stomach, something he seems to have no control over. We are used to this and just get on with it, even Sam just says ‘Finished now-sick gone’.

We have been referred to a specialist to have his autism officially diagnosed and are waiting to hear from them. This is an important step for Sam, who may need this diagnosis one day to access services.

Went to see the neurologist at Great Ormond Street on Tuesday and had a positive meeting, discovering that the EEG Sam had in the summer was ‘normal’, and the MRI Scan showed that the site of his temporal lobe resection has shrunk, and the brain is functioning normally at present, so this was really good news.

Sam is still visiting other departments at GOSH and has his next appointment for developmental Epilepsy and Speech Therapy on November 3rd.

Thank you so much for the cards and little gifts we have received in the post for Sam, Sophie and Joe. We really appreciate it and Sam gets so excited now, he has reached a stage in his awareness where he anticipates what is inside the present and rips the paper off really fast.

Before now it was a struggle, he did not grasp the concept that there was a gift inside for him, he was in another world a lot of the time. It took all day to get him to open a present himself, but now I can’t wait for Christmas, he will be such fun (fingers crossed) on Christmas Day and will be able to join in a lot more. However, there is always the fear that it will all be too much for him and he will not cope with it, so we will have to try and keep it calm for him.

Update 29th May 2008

Sam is coming on amazingly well, and on 1^st June it will be 1 year exactly since he had his brain surgery.

He has made amazing progress in the last year. His speech has improved and his vocabulary has increased, but the most important thing is he has had no seizures in the last year. We are so grateful to the surgeons and staff at Great Ormond Street, as without their expertise Sam would be having a very different life to the one he is enjoying today.

Sam still has major learning delays and communication problems, he has trouble pronouncing words and suffers from a bad stutter, but he is progressing every day. Sam’s behaviour is very up and down and he gets very frustrated with his lack of communication skills and he does like getting his own way! He is exhibiting some autistic behaviour such as hand-flapping and obsessive behaviours with certain objects, which is very frustrating for all of us.

However, Sam is very funny with a fantastic sense of humour, who makes us appreciate all the little things in life, and he is a huge part of our family life. We wouldn’t have him any other way (except at bedtime!)

I would like to send big thank you’s to Berenice, Callum and Emma, Fiona, Helen F, Chloe G, Karen (Sami), Linda B, and Julie Barrett, for all the homemade cards, gifts and kind thoughts you have sent our way in the past month, they are really appreciated.

We are thinking of all the pals who are struggling at the moment and remembering this time last year, when we too were living minute by minute, hoping for a miracle. Sam is living proof that miracles can happen, so keep strong if you are going through hard times.

Update 4th April 2008

Sam is doing fine this month. He still has a bad stammer, but is coping well and has good and bad days. His behaviour is up and down, but his sleeping is better now he is on melatonin to help him drift off to sleep. He is looking forward to going back to school and wakes up each morning saying ‘I go school today?’ Bless him, let’s hope it lasts!

We have had a lot of post and special thanks go to Jade Boyd, who sent really thoughtful gifts to all the children – THANKYOU! To Kate Dee for lovely cards and to Bereneice, Callum and Emma for great postcards from Cornwall. Also to Karen and Sami for a lovely homemade card. Lastly, thank you to the lady who sent a beautiful handmade Tomblibooos card for Sam, he loves it.

Update 12th March 2008

We have just got back from Disneyland Paris, where we went courtesy of a local charity. Sam had a fabulous time; he loved seeing all the characters and the rides. The weather was cold but fine and we are worn out from all the walking!

Sam is doing fine apart from the terrible stutter he has developed, which is so frustrating for both him and us. You can see him trying so hard to get the word out. The speech therapist says it is possibly due to his brain functions moving from the left side of his brain over to the right side following his operation last summer. It is a case of only time will tell.

We have had some lovely post this month including a Tombliboos card from Helen in Plymouth, some great homemade Easter cards, and a sweet little gift for Sophie from Julie Barrett. Many Thanks for all these things, we love opening the post and Sam loves all the cards and books/puzzles he gets.

The ideal age range to send Sam is 2 years plus, as he is developing slowly. His speech is becoming better, apart from the stammer, and he is attempting to say longer sentences all the time. We are so lucky he is doing so well.

Sam has been having some swimming lessons which he seems to love and now he isn’t having so many seizures, it’s less of a worry for us. He still needs one to one in the pool though as he still has trouble concentrating and needs constant supervision in the water, but at least he is agreeing to get in the water now!

Sam is developing into such a character, he is such a little monkey and so stubborn, but also such a loving and affectionate little man.

Update 30th January 2008

Sam turned 5 on New Years Day and had a little party which included rides on a real fire engine with some friends and he really seemed to enjoy it.

Sam has developed a stammer over the last couple of months, which makes talking really hard work for him. It is so frustrating for all of us to listen to him trying so hard and literally wearing himself out trying to say something as simple as ‘thank you mummy’. We begin 2008 with an appointment with the speech therapist who told us he has the worst case of stammering she has ever seen in someone so young. She is referring him back to Great Ormond Street to see a SALT there as she believes the stammer is a part of his recovery from his operation and should be treated neurologically. In the meantime, she would like us to try the Lindcombe Stammering therapy treatment, which involves lots of praise and acknowledging the ‘bumps’. She is not confident this will work as Sam has a very short attention span and a bad short term memory, but we will see what happens.

So many thanks to the lady who sent Sam a Christmas gift which arrived late (I can’t remember your name or email) but he LOVED the puzzle and the other gifts which were at exactly his level of 2- 6 pieces per puzzle. We really appreciate it. Also lots of thanks, as ever, to Julie who sent lovely gifts for Sam’s birthday.

Update 3rd January 2008

What a year it has been for us. Sam has been on a journey, starting 2007 with up to 10 seizures a day, hoping he would be suitable for surgery to remove part of his brain, and leading up to his operation in June which was both a difficult and fantastic day for us all. The roller coaster ride following the surgery, starting a new school, and settling in well there with the odd bad day here and there. We were warned Sam’s behaviour could deteriorate, and he has become very emotional, obsessive and controlling since the operation. We are hoping it is part of his recovery. Lately he has shown signs of the old Sam, with fewer tantrums and aggression and the old sense of humour is back, so we are hopeful.

We have had a very busy Christmas and New Year, with Sam’s 5th birthday on January 1st too. Joe, Sophie and Sam did very well this year; they were amazed to find they had letters from each of Santa’s reindeer and cards too! They also received presents from quite a few of Santa’s Elves, which were so thoughtfully sent, and quickly opened on Christmas morning! People have been so kind to us and a great support, we are very grateful. A big thank you to Bryan the Elf, and to Julie Barratt and all the other kind people for being so thoughtful. We are thinking of you.  

The room looks so bare now that Christmas is over. Sam is looking forward to going back to school, he gets overwhelmed very easily and this time of year really tests him, he will be glad to get back into some sort of routine.

Still no seizures so far, it has been 6 months now. We are still adjusting to life without the threat of seizures looming over each day, and are finally nearly believing they are gone for good. Sam has a check up at GOSH in January, where we will probably have more MRI scans etc to see the after effects of his brain surgery. They say we must give it a year to be sure of the long term diagnosis, but he is doing well so far. Tomorrow Sam is having his birthday party, with rides on a real fire engine, and we are hoping he will really enjoy it, without missing it due to a seizure. 

Wishing all the other pals a happy and healthy new year, we do read lots of updates to see how all the pals are doing, and will carry on reading all the news in the New Year xxxx

Update 4th December 2007

A big thank you to Brian the Elf for sending Sophie a Christmas gift already, she can’t wait to open it. Also a big thank you to Julie for sending lots of parcels and gifts, including an Advent Calendar for Sophie. Thank you everyone for being so generous.

Sam is keeping us on our toes at the moment, he does not seem to be able to sleep at all, and we are all very tired. His behaviour can be very disruptive and difficult, and his school is referring him to behaviour therapy. This bad behaviour could be due to the operation he had in June, a part of the normal recuperation following brain surgery, which will stabilise over time. It could be the effect of the reduction in the medication he was on for epilepsy, which was a mood stabiliser, or it could be that he is functioning at the level of a normal two year old and these temper tantrums and frustrations are a part of his normal level of development.

Anyway, we are hoping it calms down soon, as we are all feeling the strain – even Joe and Sophie cope with a lot of disruption and aggression from Sam at times.

We are looking forward to Christmas, and hope everyone stays healthy over the holidays. Sam has asked for drums!! We have got a few letters from reindeers which have arrived, which we will be starting to open tomorrow. I can’t wait to see Sophie’s face, Sam will not really understand unfortunately, but the pictures on the cards are sure to bring a smile. Many thanks to all at Post Pals for bringing us a happy 2007, and to all the kind people who send mail, it really helps to lift a day to know there are people who care enough to send a smile to us. Merry Christmas to you all xxx

Update 30th October 2007

Sam is getting on really well at school, with only the occasional tantrum if he does not get his own way! Luckily the staff are excellent with him and deal with him perfectly. He has developed some strange obsessions including flushing the toilet each time anyone uses the toilet, which he gets upset about if anyone else does it first, but we are stressing the fact that it is not his sole right to flush the toilet each time, and other people have ‘flush rights’ too!!

His autistic tendencies are becoming more apparent now that the seizures are stopped, and it is increasingly hard to get him to cooperate in certain situations. We are hoping this will be temporary, and part of the recovery from his operation in June.

Sam will be 5 in January and I don’t think he could cope with a party this year, so we have just booked for him to go for a ride on a fire engine, which we are hoping he will love!

Many thanks to our great friend Julie, who has sent many great little treats and gifts in the mail, including some fabulous Halloween pressies. The children all benefit and they send big hugs!

Happy Halloween to all pals and families x

Update 30th September 2007

Many thanks to Julie Barrett, who sent Joe, Sophie, and Sam each a lovely gift from her holiday to Cornwall. It is much appreciated, as are the wonderful letters received too.  Also to Sam, aged 6, who sent Sam a lovely letter, which we wrote a reply to.

Sam has had a good month; he had his MRI Scan at Great Ormond Street, to see why his head has started to swell up where he had the operation. We went back for the results last Monday, and the scan shows that in the space where they took out the temporal lobe, it has filled with cerebral fluid, which has caused the swelling. The consultant says that the fluid is not causing pressure on the brain, but is keeping an eye on the swelling. We have the next appointment in January, so fingers crossed there is no further swelling before then.

So far Sam has had no more seizures, and is continuing to do well at school; his speech is really improving in his day to day conversations.

The GP has requested attempt to withdraw the antihistamine medication that Sam was on to help him get off to sleep at night. He has had none for three nights so far, and it has been okay. He is still taking up to an hour to get off to sleep, and is waking up very early, so it has been quite draining, but it is better than before he had the medication, when he would take hours to get off to sleep, crying himself to sleep, wake up frequently at night, still crying, and be miserable all day!! So at least things have improved since then hopefully!

The weather is getting colder and wetter, so Sam is going to miss his outdoor playtimes when the rain really sets in. He loves to play out in the garden in his little red car and on the slide.

Update 30th August 2007

Hope you have all had a good summer. Sam recovered well from his surgery over the summer, but has had possible complications which became apparent when his head started swelling up last week. After a trip to A+E, a day at Great Ormond Street, and then an X-Ray, the consultant Surgeon said it is just swelling for no apparent reason, but was not anything major to worry about and has booked Sam in for a CT Scan to confirm this theory. We are pleased about the CT Scan as until there is proof there is nothing sinister going on inside his head, we find it hard to believe his head would swell up for no reason. Sam is fine despite the swelling, and more than ready to begin school next week. His sleeping has been awful these past few weeks and his behaviour has been very up and down, with lots of crying and screaming. He has also been unable to cope with any situation which is unfamiliar, or crowds of people. This has been frustrating for all of us. I am hoping he can be assessed for ADHD, and a mild form of autism, which is the only way I can explain his bizarre behaviour. Hopefully if he has ADHD or suchlike, we can get him the help he needs to cope with it.

Thank you to everyone who has sent cards this month and to Post Pals who sent Sam a lovely knitted toy (which is now sitting on Sophie’s bed!) Thanks for your support through this long hard summer, we really appreciate it.

Update 31st July 2007

Sam has still had no seizures since the operation in June, which is fantastic. We are seeing a big improvement in his speech and vocabulary, but he is still getting very frustrated when we cannot understand what he says. His sleep is still affected and we have had many broken nights, where he wakes up at 3am and is ready for the day and then falls asleep at 6am, leaving us exhausted for the whole day.

We have the follow up appointment at Great Ormond Street on 13th August, where they will tell us exactly what it was that they took out of his brain, a cyst or possibly a slow growing tumour, but the surgeon has told us not to worry (easier said than done!).

We have been busy in the school holidays with lots of trips to see friends, BBQs and daytrips. Trying to wear Sam out every day is hard work!

Our house looks a tip, I will get no house work done until they go back to school in September, AND the washing machine broke down.

Many thanks to everyone who has sent cards this month, Sam received a great Bob the Builder card all the way from Alabama, USA, which he laughs at every time he sees.

Have a great summer and hope everyone is keeping well.

Update 8th July 2007

Sam has still had NO SEIZURES so far, so he has done really well. His scar from the operation is healing nicely, and he is his usual cheeky self! The only complaint we have is that now the seizures have stopped, he is not sleeping! Must not complain, hopefully this is just a phase!

He has been spoilt this month, with gifts all the way from North Carolina. Many, many thanks to Susanna and her wonderful family for sending gifts to all the children, they really are over the moon with them. Sam got a gorgeous Fireman Sam blanket, Sophie got some cute stickers for her room, and Joe was thrilled with his Star Wars Beach Towel. Sophie has been excited to receive more cards and gifts from Julie Barrett, and photos of the dog Julie helps to look after, and Sam has had beautiful home made cards from Kate Dee, and from Ellyn from Alabama. We also got a lovely email from a lady whose son is going through similar to Sam and she found us through Post Pals, which I thought was lovely. I wish I had more time and could write and thank you all each time you are thoughtful enough to think of us and send something, please know we really appreciate it.

We got back from our holiday to Cornwall yesterday, which was a nice break away. The children spent lots of time playing on the beach and splashing in the sea. The weather improved over the week and we had lots of fun.

Sam has two weeks of nursery left, and then we will have the summer holidays before he starts at the special school in September. He has visited a few times and I think it will be lots of hard work for him, there is a long way to go, to improve his concentration, speech and understanding, but now hopefully the seizures have stopped things will be calmer for him, and he will come on quicker. Fingers crossed!!!

Update 4th June 2007

Sam is doing really well following his surgery on Friday. Thanks for all the messages of support you have sent, we really appreciate it.

Update 16th May 2007

All is well here, but very busy. We are preparing for Sam’s trip to hospital for his operation. We found out that Sam has been given a place at the special school we wanted too! This is a big weight off our minds, as now we know he will get the support and care he needs at school.

Many thanks to Kate Dee for the great cards, and to Julie Barrett for the lovely letters and gifts received this morning (Joe is most impressed with your wrestling knowledge!) Also many thanks and hugs to Susanna and family from North Carolina, who sent a big box of teddies and books. Sophie and Sam are over the moon with them and Sam has insisted on taking the Fireman teddy everywhere! He is practising the zip and buckle too. Thank you all so much, it is lovely to know you care.

Update 2nd May 2007

Well, we finally have a date for Sam’s operation. We will be going in on May 31st for a stay of up to a week. The operation is called a temporal lobe resection, and the surgeon is very confident that it could help Sam. They will only be able to remove 85% of the damaged tissue though, which lowers the odds of Sam being seizure free following the operation, but we are hoping it will still have some positive effect on them. It is very scary, but we just want to get it over and done with now. Sam has been very demanding over the past few weeks, being extremely angry and quick tempered, and the stress is showing on us all. Hopefully things will improve following the operation. Please send lots of extra smiles for Sam while we are at the hospital!

Sophie’s school has begun a Young Carers Club, and there are about 6 children in the school who have someone in their family who needs ‘special looking after’. She loves going to the club, where they are doing lots of art and craft projects, and talking about the person they help to care for. I am really pleased the school has recognized the special role that siblings play, and the effects on them, of having someone who is poorly in the family. Sophie showed her whole class the Post Pals website, and explained what it does to them all. Well done Sophie!

Many thanks to everyone who has sent post, especially Julie Barratt, who always sends nice things. We really appreciate it; Sam loves all the lovely cards, and Sophie and Joe love receiving post too.

Update 2nd April 2007

Sam has had a good month. We have been up to GOSH and he is finally on the waiting list for the operation. He should have it in July or August, but obviously it could be delayed. The surgeon told us about all the risks involved, which are not to be taken lightly, but we feel that we must give Sam the chance of a life without seizures now he has been offered the chance. Sam loves going on the train up to the hospital and loves playing havoc in the doctors consulting rooms!

Easter holidays are here and Sam will be spending time with Joe and Sophie. We are planning a few days out, which he will enjoy, especially to the farm which he loves.

Happy Easter and loads of hugs to all who have sent mail this month, we are really grateful. Sophie, especially, has had a good month with gifts from Julie Barratt all the way from Crufts. Thank you so much.

Update 3rd March 2007

Sam has had a good month and has been doing well at nursery, with the odd exception.

We have had news from GOSH that Sam’s case is being discussed on Tuesday, and they will decide if he can have the operation at the meeting. So fingers crossed for us!!

We have also been writing reports for Sam’s statement and doing all that we can to get him a place at a local special school.

Sam’s seizures have been quite bad, with lots of very little episodes that are wearing him out. He has been quite out of it at times, poor little thing. We are waiting to hear about a new medication from the local hospital.

Many thanks for all the kind postcards and cards for all the children, especially the Valentines cards!! Sam has been very lucky to receive a card and a gift all the way from Sweden this month. We really appreciate it.

Update 10th February 2007

Sam has been up and down this last month. As we have been increasing his medication, his behaviour has got more aggressive and violent; to the point where he was so hyperactive he couldn’t sit still. We realised it must be the medication causing this and have dropped the levels to what they were a couple of months ago, and we have our little boy back, still full of beans but calmer and more able to concentrate, and all the aggressive behaviour has gone. Just shows what effects medication can have.

We are trying to get Sam a place in a special school, and feel we are in for a bit of a battle, as the EP is questioning if he has learning difficulties. He really does have learning difficulties, but is so up and down that if you catch him on a good day he surprises you with what his abilities are. With the operation at GOSH looming in the summer, and the setback that could cause, I feel the only way forward is in a special school. Any advice on how to support our application for a place in a special school for Sam would be much appreciated.

Sam’s seizures are still occurring regularly, with no sign that the change in medication has made any difference, so it could be that the surgery is our only hope.

A big thank you to Julie Barrett, Alan Barrett and Kate Dee who always send delightful little cards and gifts, Sam loved the playing cards with Bob, Tweenies and Fimbles etc. Sophie loves receiving the letters and cards, and is attempting to write a reply. Joe loves getting things in the post too. Many thanks to everyone who have sent cards and gifts and been so supportive, it really helps to know we are not alone in this.

Update 1st December 2006

Sam has been doing okay. We have two appointments at GOSH next month, a psychological and neuropsychiatric assessment. These will be the final appointments before Sam is offered surgery (or not). Sam has been having frequent overnight seizures, which has been making him quite sleepy in the day sometimes, which in turn affects his speech and behaviour, and ability to learn. This is quite tough on all the family, but we are all looking forward to Christmas. Sam does not really understand about Christmas yet, but I am sure he will enjoy all the presents!

Many, many thanks to Julie Barratt, who has been looking after Sophie and Sam with lots of letters and gifts, they are very much appreciated, especially the advent calendar. Thank you to Kate Dee, Alan Barratt, and to Despina, all the way from the USA. Also, many thanks to some of the other postpals, who have sent Sam some lovely cards and stickers. He says a big thank you! Sam loves all the lovely postcards and we have quite a display now, full of bright colours and characters.

Wishing you all a Merry Christmas and a Happy New Year, Love to all xxxx

Update 1st November 2006

Sam has been up and down this month. We have had quite a few appointments, including the geatroentologist, neurologist, occupational therapist, speech therapist and a visit to the Royal Free hospital for a food intolerance breath test, so we have been very busy!!

Many, many thanks to Julie Barratt, who has sent some wonderful gifts and cards, to Alan Barratt, to Post Pals for sending Sophie a great art and craft bucket, and thank you for the card all the way from Singapore!!!

Sam is very tired at the moment and his seizures are still bad at night, he falls into bed exhausted each night. Happy Halloween to you all.

Update 1st October 2006

Sam has settled in to nursery well, and seems to enjoy his time there. We have an appointment at GOSH on Tuesday with the neurologist, to discuss surgery options for the removal of the cyst. Sam’s seizures are still very unpredictable, often happening at night, and are probably moving on from complex parial, to secondary general tonic clonic type seizures, which we will discuss with the neuro. Sam is on the whole coping well, but can get upset at times, as he doesn’t understand what has happened to him.

Many thanks to Julie Barratt for the lovely letters, gifts and postcards to Sam and Sophie, which we will reply to as soon as there is time. Sophie has loved receiving mail, and feels very grown up. Thanks also to Ruth, for the gorgeous tiger for Sam and the letters and also thank you to Kate Dee for the wonderful cards. We really do appreciate everyone’s kind thoughts; you really keep us going, especially on bad days.

Update 31st August 2006

Sam came home this morning from Great Ormond Street Hospital. He has been in for 3 nights for telemetry monitoring and an MRI Scan to see if he is suitable for surgery to remove the cyst from his temporal lobe, and the results show the seizures are beginning in the temporal lobe, meaning the Neurologist will probably recommend surgery, so we are now awaiting our next appointment.

We have an appointment at the Royal Free Hospital to see a Gastroentologist to see if Sam’s weight has stabilised following his recent change to a dairy-free diet, and for further investigations to see if Sam has more food intolerances.

We had a lovely holiday in Cornwall, and came back good and tired!

Sam has been so naughty this summer, both he and I are looking forward to the start of the school term next week, the summer has gone so quickly, and we have been so busy, but Sam likes structure, so nursery will do him the world of good.

Many thanks for all the lovely post for Sam, and the letter to Sophie from Julie was a treat, Sophie insisted on replying straight away!! Thank you also to Julie and Alan Barratt, Kate Dee and the Agawok girls.

Update 2nd August 2006

We had an appointment at the Royal Free Hospital on 5th July and saw a gastroentologist who recommended a dairy free diet for Sam, to try and resolve his bowel problems and very loose motions. We have managed to get him onto this, with good results so far!! We will review if the diet has been a success in 6 weeks at a follow up appointment. By the way dairy free chocolate is lovely, but do not ever eat dairy free cheese – YUK!!!!!!!

We have a date for Sam’s admission to Great Ormond Street at the end of August and we are looking forward to getting the results of the scans, to see if Sam is suitable for surgery or not.

Many, many thanks to everyone for all your kind thoughts, cards and gifts. Thank you to Julie Barrett for all the wonderful cards and postcards, to Alan Barrett for the toy tractor and cards, and to Becky Butler, it was lovely to hear from you, thank you for the lovely Bob the Builder book, Sam loves hearing this again and again! Thanks also to Victoria for the wonderful homemade dinosaur card, and to Cherie Vincent for the super homemade Giraffe card, and to Kate Dee for the lovely Jungle card. We have all the cards up on display and Sam loves looking at them and telling me to look at them!!

Sam is doing really well, and is still attending the mainstream playgroup, and also First Step, a special needs playgroup. Look for www.firststep.org.uk to see all the good work they do with a large number of very special children.

We had another trip to the hospital this morning for blood tests, which is quite traumatic for us all, as Sam seems to have barely any blood and it takes lots of attempts to get any blood out.

We also had a trip to A+E on Sunday night following a cluster of seizures and he had diazepam emergency medication for the first time, which was scary. Sam’s seizures are still very unpredictable, occurring both at night and in the daytime, but he is coping very well and is still a cheerful little chap.

Have a good summer everyone and take care xx

Update 19th May 2006

Sam recently attended an appointment at Great Ormond Street Hospital and is on the waiting list for overnight telemetry monitoring and an MRI Scan, to assess if he is suitable for surgery to remove the cyst in his temporal lobe. We are waiting to hear from them.

Sam is currently on a new medication and seems more alert and full of beans! The seizures are still occurring daily (and nightly) though. He has been seeing a speech therapist, and will be starting nursery in September. Sam’s bowels are still not quite right, causing him to be still in a nappy, but I am hopeful he will be referred to see a gastroentologist to find out what the problem is there.

A big THANKYOU to Victoria for the lovely homemade card, to Alan for the cuddly dog, to Julie Barrett for the toy tractor and the postcard from the New Forest, to Online Angels for the lovely blanket, to Post Pals for the cards to Joe and Sophie, and all the love we have received. It really helps us to know we are not alone. Sam loves opening the post every morning now.