Story written 2003

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

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

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

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

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

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

 

Update 30th October 2007

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

 

Update 8th August 2007

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

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

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

 

Update September 2006

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

 

Update 25th May 2006

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

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

 

Update 2nd December 2005

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

 

Update 25th September 2005

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

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

 

Update 20th June 2005

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

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

 

Update 1st May 2005

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

 

Update 31st March 2005

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

 

Update 5th March 2005

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

 

Update November 2004

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

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

 

Update October 2004

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

 

Update September 2004

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

 

Update June 2004

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

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

 

Update May 2004

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

 

Update September 2003

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

Update 8th May 2006

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

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

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

Update 12th April 2006

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

Update 4th April 2006

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

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

Update 7th March 2006

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

Update 28th February 2006

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

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

Update 16th January 2006

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

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

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

Update 31st December 2005

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

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

Update 16th December 2005

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

Update 28th November 2005

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

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

Update 6th November 2005

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

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

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

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

Update 30th October 2005

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

Update 13th October 2005

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

Update 26th September 2005

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

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

Update 15th September 2005

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

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

Update 12th September 2005

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

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

Update 9th September 2005

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

Update 22nd August 2005

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

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

Update August 9th 2005

Jacob is starting an intensive chemo block.

Brief rundown on the next 7 weeks:

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

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

Story written 2008

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

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

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

Update 18th August 2010

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

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

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

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

Update 3rd August 2010

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

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

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

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

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

Update 23rd April 2010

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

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

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

Update 14th January 2010

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

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

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

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

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

Update 8th December 2009

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

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

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

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

Update 2nd November 2009

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

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

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

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

Update 30th July 2009

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

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

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

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

Update 20th May 2009

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

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

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

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

Update 3rd March 2009

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

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

Thanks for stopping by and catching up.

Update 6th February 2009

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

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

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

Update 5th January 2009

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

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

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

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

Have a safe and happy 2009.

Update 4th December 2008

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

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

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

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

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

Update 1st November 2008

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

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

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

Thanks for stopping by and catching up.

Update 8th October 2008

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

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

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

Update 30th August 2008

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

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

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

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

Update 31st July 2008

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

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

Update 11th July 2008

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

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

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

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

Update 6th June 2008

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

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

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

Jack received a quilt from Claire at Quilts4Leukaemia  – it is stunning and has blocks on it made from people all over the world. Claire contacted us through Post Pals – there is a photo of Jack with his quilt on their website http://quilts4leukaemia.blogspot.com/

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

Update 14th May 2008

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

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

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

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

Update 1st April 2008

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

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

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

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

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

Update 28th February 2008

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

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

Thank you to all our new Post Pals!

Story written 2005

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

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

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

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

Story update March 2007

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

Update 2nd January 2009

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

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

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

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

Update 3rd November 2008

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

Update 30th August 2008

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

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

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

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

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

Update 30th July 2008

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

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

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

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

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

Update 6th May 2008

Thank you all so much for your messages and emails.

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

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

Update 17th April 2008

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

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

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

Update 9th April 2008

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

Update 2nd February 2008

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

Update 23rd December 2007

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

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

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

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

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

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

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

Update 3rd December 2007

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

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

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

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

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

Update 8th October 2007

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

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

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

Update 30th August 2007

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

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

Thank you for continuing to support us.

Update 30th July 2007

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

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

Update 11th June 2007

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

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

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

Update 27th May 2007

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

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

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

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

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

Update 29th March 2007

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

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

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

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

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

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

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

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

Update 2nd March 2007

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

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

Update 27th February 2007

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

Update 7th February 2007

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

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

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

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

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

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

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

Update 6th February 2007

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

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

Update 29th December 2006

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

Update 28th December 2006

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

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

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

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

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

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

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

Update 30th November 2006

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

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

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

Update 28th November 2006

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

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

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

Update 31st October 2006

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

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

Update 1st October 2006

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

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

Update 3rd September 2006

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

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

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

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

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

Update 4th August 2006

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

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

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

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

Update 29th June 2006

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

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

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

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

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

Update 31st May 2006

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

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

Update 29th April 2006

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

Update 30th March 2006

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

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

Update 27th February 2006

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

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

Update 28th January 2006

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

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

Update 16th January 2006

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

Update 30th December 2005

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

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

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

Update 19th December 2005

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

Update 16th December 2005

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

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

Update 29th October 2005

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

Update 15th October 2005

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

Update 10th October 2005

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

Update 25th September 2005

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

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

Update 18th September 2005

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

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

Update 5th September 2005

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

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

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

Update 4th September 2005

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

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

Update 25th August 2005

Update 22nd August 2005

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

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

Story written 2004

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

Story update 2007

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

Update 3rd January 2011

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

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

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

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

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

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

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

Sue xx

Update 30th October 2010

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

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

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

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

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

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

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

Update 30th August 2010

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

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

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

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

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

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

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

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

Update 8th August 2010

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

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

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

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

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

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

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

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

Wishing you all a lovely summer and great summer holiday!

Update 9th June 2010

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

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

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

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

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

Update 1st May 2010

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

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

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

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

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

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

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

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

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

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

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

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

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

Update 4th March 2010

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

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

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

Update 8th February 2010

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

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

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

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

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

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

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

Wishing you all a great February Half Term holiday.

Update 15th January 2010

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Update 28th November 2009

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

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

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

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

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

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

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

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

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

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

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

Update 9th November 2009

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

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

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

We have an online appeal where donations can be left – should anyone reading this feel they’d like to! We’ve only got ten pounds as I write this… http://fundraisers.everyclick.com/info.xq?id=1158100&fundraiser-name=Suzanne-Gilmore

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

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

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

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

Update 29th September 2009

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

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

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

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

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

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

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

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

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

http://fundraisers.everyclick.com/info.xq?id=1158100&fundraiser-name=Suzanne-Gilmore

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

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

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

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

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

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

Update 30th August 2009

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

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

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

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

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

Update 8th July 2009

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

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

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

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

Update 6th June 2009

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

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

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

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

Update 7th May 2009

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

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

Update 1st April 2009

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

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

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

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

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

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

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

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

Update 28th February 2009

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

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

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

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

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

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

Update 10th February 2009

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

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

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

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

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

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

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

Update 5th January 2009

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

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

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

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

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

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

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

Update 5th December 2008

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

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

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

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

Update 2nd November 2008

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

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

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

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

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

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

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

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

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

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

Update 8th October 2008

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

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

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

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

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

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

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

Update 30th August 2008

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

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

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

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

Update 8th August 2008

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

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

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

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

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

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

Update 1st July 2008

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

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

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

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

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

Update 3rd June 2008

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

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

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

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

Update 30th April 2008

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

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

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

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

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

Update 2nd April 2008

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

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

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

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

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

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

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

Update 2nd March 2008

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

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

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

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

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

Update 4th February 2008

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

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

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

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

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

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

Update 18th January 2008

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

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

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

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

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

Update 2nd December 2007

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

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

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

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

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

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

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

Update 9th November 2007

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

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

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

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

Update 30th September 2007

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

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

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

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

Update 1st September 2007

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

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

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

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

Kind thoughts to all until next time xx

Update 4th August 2007

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

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

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

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

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

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

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

Until next time – Happy Summer!!

Update 2nd July 2007

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

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

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

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

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

Update 4th June 2007

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

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

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

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

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

Update 1st May 2007

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

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

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

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

Update 31st March 2007

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

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

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

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

Wishing you all a lovely time at Easter.

Update 3rd March 2007

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

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

Update 8th February 2007

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

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

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

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

Update 5th January 2007

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

Update 1st December 2006

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

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

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

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

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

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

Update 1st November 2006

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

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

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

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

Update 8th October 2006

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

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

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

Update 30th August 2006

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

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

Update 2nd August 2006

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

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

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

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

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

Update 6th July 2006

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

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

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

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

Update 31st May 2006

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

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

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

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

Update 1st May 2006

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

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

Update 30th March 2006

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

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

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

Update 28th February 2006

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

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

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

Update 31st January 2006

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

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

Update 30th December 2005

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

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

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

Update 28th November 2005

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

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

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

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

Update 30th October 2005

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

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

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

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

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

And he says ‘Mom’… Definitely!

Update 15th August 2005

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

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

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

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

Update 22nd June 2005

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

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

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

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

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

Update 18th June 2005

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

Update 28th May 2005

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

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

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

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

Update 25th March 2005

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

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

Update 5th March 2005

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

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

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

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

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

Update 20th January 2005

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

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

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

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

Update 31st December 2004

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

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

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

Update 22nd December 2004

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

Update 12th December 2004

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

Update December 2004

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

Update November 2004

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

Update October 2004

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

Also special thanks to Kate Dee – beyond words.

Update September 2004

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

Update August 2004

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

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

Update July 2004

Since joining very recently, we have been inundated with stickers, craft kits, teddies, water balloons, colouring books, blanket, balloons, cards emails etc.

We share and show Harry as much as possible and have all the things displayed everywhere!

Receiving all these items from thoughtful folk who want to be in our lives, means so more than we can ever express!

There is SO much LOVE in Post Pals it’s fantastically touching! Our lives are richer for sharing our sad times with you! Love Su

Update June 2004

Harry received lots of cards and presents for his birthday, including stickers, soft toys and lots more for his birthday, some people “even spent a long time making posh artwork”. They were very touched and pleased, and say a BIG thank you to you all.

Story written 2006

Hannah’s Dad Roger had NF1, and passed away from cancer when Hannah was 2. She was diagnosed with the same condition a week later.

Hannah initially was affected very little by her NF, she had the brown patches (Cafe-au-lait spots) and there was a slight symmetrical difference in her face which you couldn’t quite put your finger on. Over the following years we discovered that Hannah has a Pleziform Neurfibroma tumour above her right eye and another one on her back, the Sphenoid bone at the back of the orbit is the wrong way round and learning difficulties which are associated with NF1. Seeing Hannah every day reminds me so much of Rogers condition.

Hannah’s sight has been affected by the growth of the tumour. Hannah has had a few scans but these are not done often as she has to have general aesthetic so she lies still, the consultant is reluctant to over prescribe them to children.

Hannah has regular eye checks; she has to have drops in her eye so the consultant can see to the back of her eye. Hannah hates this and screams. It’s hard as a parent to have to see your child hurting.

Hannah has learning difficulties and gets help at school; it’s very common for NF1 patients to have a spectrum of learning difficulties. Hannah tries very hard but easily becomes distracted and frustrated. Her behaviour can be difficult for others to handle, especially in a new situation and with new people.

The tumour above Hannah’s eye has got to a size where it is impacting on her sight and the older she is the more she notices what other people think about the way she looks. She has had some hurtful comments from children and adults especially when we are away from our home town. Therefore Hannah and I have decided for her to have an operation to de bulk the tumour. This brings risks but will hopefully improve her quality of life.

NF is such a varied condition from one person to another, there is no start, middle and end, you never know when another tumour is going to grow, how you’re going to be affected or when. It is very like a roulette wheel.

Update 19th February 2008

Hannah is doing well and is going for regular check ups. As those of you who are familiar with Neurofibromatosis will know, the condition is very much a lottery as to what is around the corner. I live in hope that all will be well for Hannah for the foreseeable future.

Hannah, Matthew and I would love to thank you all for your support, cards, letters and gifts over a difficult time for Hannah. To keep updated with Hannah please visit our web page www.elizabethtucker.co.uk Once again, thank you.

Update 30th January 2008

Hannah is doing well and is having regular check ups. Her eye sight has not got any better; however, there is no deterioration in her eye sight since her operation.

Hannah is going on cub camp this weekend!

Update 3rd November 2007

Hannah has an appointment in Manchester with surgeons and eye people next month; we will let you know how it goes.

Hannah has started singing lessons which she really enjoys. She is going for an interview today to join the academy which meets on a Saturday. It involves 1 hour of dancing, 1 hour of singing and 1 hour of drama to help build confidence.

Update 1st October 2007

Hannah has been to the orthodontist this week to see about having a brace. She had to have an x ray and is waiting for her next appointment to have a mould taken.

Update 17th August 2007

I’ve just returned from Florida and met Mickey Mouse and the Princess it was so exciting. Saw manatees in the river although I was too scared to get in the water and swim with them. The Disney Parks were brilliant, especially for children like me with special needs. I had a card that I presented at the start of every ride and where available I was able to use a different entrance so that I didn’t have to stand in line as long. I find that very difficult. The Disney Parks were also very helpful – better that some of the other parks in Orlando. On day 13 I was very tired and could not walk any further, so we hired a wheel chair which was brilliant for me. Mum thought I had done well to walk as much as I had as I’m not the best walker in the world and I get tired very easily. Access with a wheel chair is brilliant all over the theme parks. For some rides you have to leave the chair at the entrance and transfer on to the ride a short distance, but on the whole you can take the chair with you. I loved every moment of Florida.

Update 2nd July 2007

Hannah is till doing ok apart from a few headaches and a little swelling in eye. We hope to have a check up soon. We’re going to Florida in 4 weeks and it’s very exciting. Watch out Mickey, we are on our way!

Update 5th June 2007

We have just been to London to see the show The Sound Of Music and to visit London Zoo. Hannah loved it! Hannah has also just passed her green colour swimming skills certificate.

Update 17th February 2007

Hannah is still doing very well. She still has discolouring around the eye but the swelling has gone down.

Thank you to those who sent Matthew birthday cards. He feels left out with his sister and her condition requiring so much attention.

Update 30th November 2006

A week to go until Hannah’s operation. She has no colds or viruses so we are hopeful it will go ahead next week. They are de bulking the plexiform tumor.

Story written 2007

Gaby was diagnosed with a rare thyroid tumour in Dec 05, after being treated for something else for 15 months. It was a big shock! Following diagnosis, Gaby underwent 8 hours of surgery at Alderhey followed by radiation treatment at Christies, Manchester. She has been very brave and always has a smile for everyone! Her treatment will continue for the foreseeable feature but looks positive.

Gaby has 3 sisters, Steph, Cat and Emma. Steph lives aboard but Catherine and Emma have been a big help to Gaby. She loves being at school with her friends and has only missed school when she has been too ill to go!

Gaby has remained very positive and is grateful for all the opportunities her illness has given. She has made lots of friends, especially on our stays in Malcolm Sargent House in Scotland. She has been to swim with the dolphins, been in a pink limousine, and been to Lapland.

Despite having a 10 inch scar on her neck, Gaby loves having her photo taken and would really love to be a model. She would love to meet Tara Banks.

Whilst Gaby is having her treatment she has to be in isolation due to the radiation but always manages to smile. In Dec 06 she was awarded “Cancer Research UK Little Star Award” for being such a little star!

Update April 2011

Gaby is moving on from Post Pals. She has so enjoyed her time here and has had many smiles from her post. Lots of the gifts and cards sent to her are displayed in her room.

Michelle (from Chelsea’s Angels) knows how much Gaby loves and uses her laptop. It helps Gaby keep in touch when she can’t get out. It’s good to know that there are so many caring people about.

Thank you to everyone who has made Gaby smile. I’m sure that we will keep in touch with many of you via facebook. Do send me a message there if you would like to know how Gaby is doing. Her journey continues.

Thanks to Viks and all her helpers for keeping Post Pals going, I know its not an easy job.

Update 30th January 2011

Gaby wasn’t too well over Christmas, she had flu and a bad cough but has bounced back.

She has been enjoying her skating and is getting quite good now!

I can’t think what else to say about her progress as it’s all so slow with this. Waiting, waiting!! Her last blood results didn’t show anything different so we just carry on!!

Thank you to everyone who sent gifts to the girls at Christmas, they loved them all! We had a very quiet Christmas, but it was nice just to be at home I guess!!!

Update 10th November 2010

Gaby has a usual month. The only thing that seems to have changed is that her blood results have begun to slowly move down at last! In herself, she remains cheerful and has only missed 3 days of school!

She had a great time at Alton Towers, though it was a very long day. She is looking forward to her new bed being delivered tomorrow. Her ‘old’ one which was only a year old collapsed! So she is having a pretty white iron one! Hope it fits in her room!

Thanks to everyone who sends post to the girls! It is really appreciated!

Update 1st October 2010

Thank you to everyone who continues to send mail to the girls. It always brightens their day!

Gaby managed to get to Disney Paris and had a great time, albeit with no insurance as the company wouldn’t cover her! She was ok though. It was very special too as a friend is working there and Gaby loved having “Minnie” make a great fuss of her!

She has settled well in her new school. Nothing has changed with her, so we just carry on as usual. Back to hospital next week!

Update 31st August 2010

Gaby has enjoyed a break at the seaside this month and the weather wasn’t too bad! She has been well, apart from being very tired at times. She is looking forward to starting at her new school on Thursday and we are going to Disneyland Paris this weekend so she is excited about that too! She has managed to do well at her skating as well and has passed several grades!!

Thank you to everyone who has sent her gifts over the last month or two. She has had some very pretty jewellery and also a nice book and a Monopoly game!

Update 4th July 2010

Gaby is well in herself, nothing new. Yet again this month her treatment has been changed though as it wasn’t holding things in check. She is coping with it though.

Gaby starts high school in September and is really looking forward to it, although is sad to be leaving her old school. She is taking part in a leavers play and service and the school are having a disco for them. She has most of her new uniform!

Thanks to everyone who has sent post to Gaby and her sisters. She had a lovely letter from Alba in Spain and many others. They get taken away before I have a chance to look sometimes, so not easy to mention everyone, but thank you so much!

Update 1st May 2010

Gaby has been overwhelmed by the amount of mail she has had this month. Cards, letters, emails and gifts! So many! Thank you all so much! Far too many to mention but Gaby has started to write replies to some of them and has replied to some emails. She hasn’t managed to do many though as her laptop needs fixing and she has to borrow her sisters when she can.

Gaby remains much the same though her treatment has been changed as her TSH levels were rising and that’s not good news! So it has been increased. She seems to be alright with the new regime but is still very tired. She has had a few infections lately but has fought through!

Gaby received her love quilt recently! She really loves it and has it on her bed. Thank you to all the sewers from Lovequilts, its lovely and must have taken a lot of thought and hard work to do it!!

Thanks again for all the kind thoughts! It makes Gaby smile every day!

Update 28th February 2010

Gaby is going back to Christies tomorrow and not looking forward to it! She has had the usual visits and bloods this month. She is well enough in herself, just tired. Her sisters went skiing with school during half term and we had a well earned spa break, with Gaby going to my friends for a few days. I’m so grateful for her doing this as we haven’t had any time to ourselves for over 4 years and it was much appreciated!! It’s so difficult to get a break from all this!

We have had some lovely things this month! Emma says thank you for all her birthday wishes! We had several valentines’ cards from… who knows?!! And a lovely parcel of valentines gifts from Caroline in France!! Also some nice things from Samrana! And, of course, we had Percy’s update! Thank you all! I know Gaby had a lovely bracelet with her name in beads but she took it upstairs so fast i don’t know who sent it – she loves it though! Hope i haven’t missed anyone but sometimes it’s hard to remember!

We have managed to get a break away in August arranged so we hope we get good weather. All we want is to play on the beach!

Update 31st January 2010

Gaby has been feeling very tired this month and at the minute has in infection which isn’t helping. She was at the hospital last week and is again next week and back to Christies the week after! We won’t really know anything until after that. She really hasn’t been up to anything other than school, though did manage to dance for a while today.

She has been trying some cross stitching and has also got into Sequin Art which I quite fancy trying myself, looks very impressive!!

She has been pleased with the post she has had this month and has passed the time in bed with her craft bits that came and also the changing eggs! The Ted Baker bag has also been well used, for school! It was meant for Emma but she let Gaby have it! We have had post from all over the world recently and its very kind of you all to think of Gaby and her sisters.

Update 4th January 2010

Gaby has remained stable this month and she enjoyed her birthday and Christmas for the first time in 4 years without a hospital in sight!!

Thank you all so much for the gifts for her birthday and for Christmas wishes! She has still been very tired and had some pains but has really enjoyed the Christmas break. Back to school tomorrow and hospital appointments next week though!

Thank you all so much for thinking of Gaby and her sisters. There are too many to thank individually, but every one is appreciated!

Update 29th November 2009

Gaby has just done an audition for Britain’s Got Talent, so fingers crossed! I was so proud of her!

She has had a good month and her blood levels have dropped by about 1.3! Only another 60 to go! It has taken 4 years to get to this point, it’s a slow job!

She is looking forward to her birthday and Christmas and hopefully no sign of hospitals this year!

Update 4 November 2009

Gaby has been a bit unwell this last month. She had a few days where she got really down and wouldn’t eat or drink and only slept, but seems to be better now. She had a good rest over half term! She has had her normal bloods done, no change there again. Nothing here seems to move very fast! Guess that’s how it is with this!

She has just heard though that her dance group has an audition for Britain’s Got Talent on 28th March! She is very excited; they are going to Manchester for it. The episode of secret Millionaire that she was on at Donnas’ Dream House was also on again this week! Well it was an update. That is such a great place and Barbara and Len who run it are great!

We’re trying to decide about holidays next year; Gaby would love a beach holiday but the weather here is so unreliable. We have decided that travelling abroad with her is not that easy at the minute so we’re taking the easy route. Though just for once, hubby has managed to book time off work in August!

Gaby loved the Chinese lanterns we received this month, though we still have some and thought we may use them at New Year! Thank you to those who have sent cards to the girls this month, including Leslie and Wendy! To Jane and Tam for the post cards… Gaby loves polar bears Tam!

Update 30th September 2009

Gaby has just come back from Outdoor Education at Loggerheads. She had a great time and enjoyed all the activities there! She came back exhausted though!

In herself she remains the same, happy and smiley girl. She is very excited because her long awaited wet-room is almost finished, so she will be able to wash and bathe more easily!

We are going to have a break next week, courtesy of Christian Lewis, to whom we are very grateful. She is looking forward to that!

We are in treatment limbo again, as it seems that the scan wasn’t that conclusive. It may be that they just go ahead, which is what Gaby wants, but after so much radiation they are being cautious. Not knowing is almost worse than when we were diagnosed. At least then we knew what was going on… ish!

Thank you to everyone for all the post!

Update 31st August 2009

Gaby has loved the gifts she had this month. Her sister wanted the cushion from La Senza as it matched her PJs! And the teddy is lovely! She has had lots of cards wishing her well with her scan. The ones from Megan and Sakiba in Manchester were lovely! She also sends her love to Percy!

Ahhh the scan! Gaby went to Christies twice this month, once for a PET scan that they decided to do rather than keep blindly treating her. Gaby wasn’t keen on the cannula but the scan went well. Then they decide that it will only tell us what was happening on that day and it is not a be all and end all as we’d hoped! Also, her blood results which have so far either been static or dropping have now gone up! So we are no further on. It looks like this is as good as it will be! They will continue to run her thyroxine high to suppress any tumour growth.

In herself, Gaby has been ok (the same old tiredness and stuff). We haven’t done much over the holiday but she has swam a bit and been out with friends.

We are going to Christian Lewis caravans in October. Let’s hope the weather stays good! She is also going to Outdoor Ed with her school next month but it is only a few miles away if there is a problem. She is still hoping to get up the Eiffel Tower one day! It’s a good job that Gaby has the strength for both of us, as some days its hard going not knowing what’s happening!

Again, thanks to everyone who sends mail to the girls, it brightens their day! It is nice to know that people have time to think about them.

Update 3rd August 2009

Gaby has been back to Christies twice so far this month. She is having a PET scan on Wednesday and isn’t looking forward to it. Due to it involving her head, she has to stay still for almost 2 hours without talking! She has been crying a lot and trying to get out of it and I’ve had to resort to bribery! In addition to that, the blood results, having either been stable or heading the right way for ages now, have shot up! As usual though, she is bearing up, being her happy little self. She has been just the same, tired out most of the time!

She is looking forward to going to outdoor education in September with the school. Rather them than me!

I’m sure Gaby would appreciate some TLC this week. Thank you to all who sent mail, especially Sarah for the bracelet that she loves and Wendy for the so cute bunny!

Update 4th June 2009

Gaby continues along the same path. Her latest scan “warrants further investigation”. So we wait!

In herself, she hasn’t been too bad, though has had a few days when she has overheated and been hallucinating. I think it’s down to the good weather we are having! Her skin still itches but she isn’t scratching so much so that’s something! She managed to do the field events at school sports day but the track events were a bit too much for her.

She has been thrilled with the post this month, some beautiful cards, particularly from Chris and Wendy, thanks so much! And to Jean for the chocolate from America which was soo beautiful, Gaby was stunned and it’s a shame to eat it! It even moved her to write a thank you but so far it’s still unfinished so I will pass on her appreciation here. She is usually too tired after school to do much and last weekend didn’t move far from her bed. Thank you to everyone who takes the time to write to Gaby, it really means a lot. And thanks to Viks and the team too.

Update 1st May 2009

Gaby continues to be well but tired. She has just come back from an outdoor education trip for 3 days and looks worn out! I’m sure she had a great time though!

She is waiting to see another consultant about her skin problems. Other than that we just plod on!

Update 3rd March 2009

Gaby has been to see the X Factor tour this weekend and really enjoyed it. She got very tired though and was struggling a bit with her tummy pains. She has had pains in all sorts of places this month! She goes back on her treatment regime this month. I haven’t told her yet but I’m sure she will take it in her stride! She has been itching a lot and has scratched her skin to pieces in places.

Thanks to everyone for her mail and for her sisters too. It was Emma’s birthday in February and she had lots of cards. Many thanks to all the new pals too. Gaby was amazed to get a book, with a lovely letter, from Joanna in Greece! Every mail is special and Gaby loves getting them! Thanks to stitched with love for Gaby’s cushion too, it’s on her bed!

Update 6th February 2009

Once again, thank you for all the wishes and cards sent to Gaby and her sisters. Every one is different and a pleasure to receive! We have had cards from some new posties this month so thank you! She was totally made up with her Miley Cyrus book!! And Mum liked the chocolates too!

Gaby has been tired this month, and has been feeling a bit off colour. She has been staying in bed quite a bit. She has also been itching badly and we’re not sure why. If anyone else says the word ‘virus’ to me I may scream! We seem to have got to the ‘watch and wait’ phase of her treatment, which is almost worse than knowing what’s happening! Just blood tests and scans! It’s hard to believe we have been on this path for over 3 years now. But she remains happy and she had fun out in the recent snow!

Update 6th January 2009

Gaby had her normal monthly scans etc last month and there is still no real change. We approached Christmas cautiously as the last few she has been ill, but she remained well and enjoyed her birthday too. She had a disco party and i felt so happy seeing her running around and having fun. She managed to get through all her school concerts too!

At the moment Gaby has a cold coming on which we try to avoid at all costs as she has no lymphatic drainage from her head on one side so her face swells up. It’s looking a bit puffy so we’re hoping it doesn’t get worse.

Last months post was overwhelming! There were parcels and mail almost every day! The girls want to say a big thank you to everyone! Emma had a lovely elf box from her elf, thank you so much! They opened it so fast I didn’t see it all. When i ask them “where did you get that?” the answer is usually “Post Pals”! Oh and when Gaby found her X Factor T shirt which Viks had cunningly disguised, she was so excited! I meant to take some photos but they were way too quick!

Gaby has started guides tonight. She has gone with her sisters and was so excited! It’s also Cat’s birthday today – thank you for all her birthday wishes!

I’d just also like to say that one of Gaby’s friends was been diagnosed with leukaemia over the holidays. My thoughts go out to her family, and hope that it all goes well. I think Gaby is worrying about it because of her experiences, so she could do with some cheering up.

Update 10th December 2008

I have sat and watched you on TV this morning! You are so amazing, I had tears in my eyes watching!

It’s Gaby’s birthday tomorrow and she has so much from Post Pals! I can’t work as much as I would like due to Gaby’s condition and all these gifts make so much difference to Gaby and her sisters! I just want to say a huge THANK YOU to you and all the regular posties… Kate, Julie and many more! It makes so much difference to Gaby and the whole family!

Update 1st December 2008

Well, for the first time in 3 years we seem to be going in the right direction! At last her thyroglobulin levels are falling! Though we have been told not to get too excited… it may be a one off! So we are having more bloods done again in December, as usual. At least this year for the first time in 3 years we will be home for Christmas (well so far it looks that way!).

Gaby is looking forward to her birthday. She is having a disco party. She went to a friends swim party last week and had a great time even though she spent the next 2 days recovering! I don’t think her tiredness will ever improve. It’s just something we have to live with. She has now got a really thick duvet on her bed as she couldn’t keep warm with these cold nights! You can barely see her but you can hear her snores!

We have had so many nice things this month! Gaby and her sisters say a great big thank you to everyone who takes time to send them things. They all had an anonymous parcel each with lots of things in… thank you so much who ever it was! Emma was over the moon with hers as it had a new black handbag in it and she absolutely loves it… she is a total bag lady!

Update 3rd November 2008

Gaby has re started her scans and bloods again this month. Her scans are still showing nodes in her neck so we just have to wait and see what happens. She also has anaemia so is very tired.

We have just had a lovely break at Donna’s Dream House in Blackpool. It’s a great place and the people who run it are just amazing! Gaby was pleased we got up the tower but still wants to do the Eiffel! Pity the weather was so cold! The lights were amazing too!

Thank you all so much for all the gifts you have sent to Gaby and her sisters this month! It has really cheered them up!

Update 28th September 2008

Gaby is back to her hospital routine now. She had a break over the summer, to see if waiting any longer would show any new nodules. She has had 5 lots of blood taken so far and will be having her second MRI scan this week. She really hates having them as she has to lie still with her neck extended for 40 minutes which means that she can’t even see the dvd player that is there! She has also had a lot of shooting pains in her head and on top of that she has a cold! So a miserable bunny at the present! Needing lots of hugs!

Thank you Julie for the Pot Bellied Pig! She enjoyed looking at it! And thanks to everyone else who as sent mail to Gaby and her sisters!

Update 30th August 2008

Gaby has had a break from everything this month and we have been on holiday to Yorkshire. She has had some good days and some not so good! She is looking forward to going back to school next week. She isn’t looking forward to getting back to hospitals though! Next month she has another scan and a hospital visit.

She loves getting post and seems to get more than we do!! Cat and Emma also like getting letters and are often busy sending them too! Thank you all for thinking of us!

Update 7th July 2008

Thank you all for all the mail Gaby gets. She was especially impressed by Despina’s card from New York! And also from Mrs. Miles class at Summerhil School in Brighton! It’s very kind of all of you to think of her and her sisters!!

Gaby has had an easy month in June, with only one appointment. July is going to make up for it though! We are back at Christies for review on the 21st. She still has antibodies to the thymoglobulin, so we can’t really see what is happening, but it’s assumed that antibodies to TG mean that TG is present and therefore, also thyroid tissue, which we really don’t want! We are hoping that she hasn’t become resistant to the treatment.

In herself, she has been much the same! Still gets pain here and there but carries on regardless! On Saturday she did the Survivors lap of honour at our local Cancer Research Relay for Life! We would love to come down to the Pals party but it is too far for her to travel. We hope to meet up with Summer this week though!

Update 2nd June 2008

Gaby has been well but grumpy this month. She had an MRI scan which she hated as they had to hold her head still in a frame. The scan showed that there are still lumps in her neck so we are going back to Manchester soon for more review!

We’ve just had a lovely week down in the New Forest. The weather wasn’t at its best but it was nice to get away! Back to reality now though!

Gaby loves to get your mail and so do Cat and Emma. It means a lot to them so thank you to all who take the time to make their day!

Update 2nd May 2008

Gaby isn’t happy this month as she now has to have bloods taken more often and has to have a line put in to take them. She also has to have MRI scans which she hates as she has to lie still for so long! She has also not felt so good; she even had a few days off school which isn’t like her! She is looking forward to going on holiday to Bournemouth though at the end of May – let’s hope the sun comes out!

Thank you all for all her mail! She loves getting post, it makes her day!

Update 4th April 2008

Gaby has had a reasonable month and has been quite busy! She went to stay with her Grandparents for a few days after Easter which gave me a break. She had lots of Easter eggs and we have also bought the girls a trampoline with their Easter money! Let’s hope that was a good idea!

She has been well in herself apart from the usual tiredness and pain. However her blood results from her monthly tests are not showing the results we hoped for and it’s looking likely that the last treatment has not been as effective as we hoped. At the moment, all we can do is wait. It may take another few months before we have an answer. All we can say at the moment is that it’s possible that there is still some tumour somewhere.

Gaby would like to say Thank You to all of you who send her letters. She tries to reply but can’t always! She checks the post avidly each day and she loves it when it’s from afar! They do mean so much to her, especially on her bad days when she can only rest in bed. Thanks to Julie, Maria Kate, Jenn, Nicki, John and other Pals! Also to anybody we haven’t mentioned!

Our sponsored swim is still ongoing. We had a break due to problems at the pool but we hope to be under way again with some publicity!

Update 27th February 2008

We are still waiting for a verdict from the hospital on Gaby’s recent treatment but we don’t seem to be having much luck! However, she has not been well this month and seems to have far more off days than normal. We don’t seem to be able to get on top of the pain and nausea and she always seems tired and sleeps for most of the time that she isn’t at school! She always has a smile though! We hope that we will get a result from the hospital soon. She has yet another medicine now… from the dentist! She has given her a fluoride wash as the vomiting and loss of calcium is taking a toll on her teeth. She did manage a bowling party with a friend this week but spent the rest of the night in pain and nauseous! Hmmmm… maybe that was too much ice cream!

Emma says thank you to everyone who sent her cards and gifts for her birthday. Thanks to Maria and Jo, and everyone else! Catherine seems to have written to most of the other pals this month! She is really into card making! Gaby has been really pleased with all her post! She has had a lot of cards and letters and I know that Cat tries to reply where she can but if we haven’t got to you, we really do appreciate the time you take to think of   us all. Thank you so much!

My swim continues… slowly! With school holidays and caring for Gaby it’s been a bit slow but I hope to get there! Every time I plan something, I either get called to work or Gaby is sick!

Update 1st February 2008

Gaby has had a quiet month. She went back to Alder Hey but we will have to wait a while longer before we know how her recent treatment went. Apart from her pains and tiredness she has been well. She has not been able to dance recently as she finds it all a bit much but maybe she will get back to it soon. She can mange to swim for a few minutes with her sisters, and has managed to swim 25m, albeit very slowly! She really enjoys getting mail from her friends here! Her card quilt was a great success!

Update 3rd January 2008

Gaby has had a busy month with everything going on! She has been to O2 arena to see High School musical! And it was Christmas and her birthday! She managed to get home from hospital in time to celebrate her 9th birthday with her family, but she was very tired after her treatment at Christies. We now have to wait and see how effective it has been. She is starting to pick up a bit now that she is back on her thyroxine but is still getting tummy pains. She decided when she was at Christies that she was a big girl now and doesn’t need to have “magic cream” anymore! So she had all her bloods without! This means that now she can have venous blood taken which makes life a lot easier for us all! I’m very proud of her! Today is the first day in ages she has managed to get dressed! We are back at Alder Hey next week.

Gaby remains happy though and has been so pleased with all the mail she has had this month. She has never been bored with all the things that have been sent for her to do. She has been making things with Cat for other Post Pals! It helps take her mind off things! Thank you to everyone who sent things to Gaby and her sisters! Gaby and Cat will try and reply to those with addresses, but if we miss you, thanks so much for your kindness, it means so much to Gaby and she loves getting mail especially when she isn’t feeling too good.

Update 19th November 2007

Gaby is going back to Christies for more treatment on December 3rd. She isn’t feeling too good at the minute, she is very tired and in pain, but she keeps smiling! Yesterday she got to fly with Santa in a helicopter! She really enjoyed it! She has also been keeping up with her dancing, winning a competition on Friday! We are not sure if she will be out of hospital for her birthday on the 11th so we have been getting her a few treats before she goes! She had a manicure on Friday and has had some new clothes. It always seems to be this time of year when she is having treatment – over her birthday and Christmas. We also have to fit in moving to a new house as well! The weather has got so cold and Gaby is   finding it difficult to keep warm, while her thyroxin is low. She has to stop taking it for 4 weeks before she has her treatment. Once she has had her radiation she has to stay in isolation as she is radioactive. This means I can’t go in and cuddle her – well only for a little one! It can take several days for it to clear enough for her to come out! It also makes her feel very sick and tired, so she isn’t really looking forward to it! It can be boring for her too as no one can visit!

Hopefully she will be back to her normal self in time for Christmas. Thanks for all your messages, she really loves getting them!! Do note the new contact address though!

Update 20th October 2007

Recent investigations have shown that Gaby’s tumour is re-growing in her neck. She has just spent a few days in Christies in Manchester while it was checked out and she will have to go back in December for another radiation treatment.

Gaby remains happy and has been really brave this last week while tests were done. She was so pleased to come home and find some Post Pals mail! It really cheers her up and although she can’t reply to you all, she knows each and every one of you! She keeps it all in a file and knows where everyone lives and who they are! Thank you all so much… it really cheers her up!

Update 12th August 2007

Gaby has been having a good summer playing on the beach and has even managed to get out on her new bike! It’s been a long time since she wanted to do that! She is back in Alder Hey next week and is actually looking forward to it! She hopes they will find out what is making her tummy so sore!

She loves getting all your messages and sends her love to all of you! She will try and write back to you when she feels able to!

Update 11th June 2007

Gaby continues to be a happy little soul even though she is constantly tired and in pain. We are waiting for a date for her to go into Alder for more surgery and some tests to find the cause of this.

She has managed to make some progress with her swimming now though, and our new car has made taking her out a lot easier.

She loves getting Post Pals mail! She keeps it all in a little folder and gets it all out and reads it! So thank you to all of you who take the time to make her smile!

Update 11th April 2007

Gaby is hopefully doing well. She is not going to have anymore radiation for the time being so has now been transferred back to the care of Alder Hey. She wants to thank you all for everything that has been sent! She runs for the post everyday and will try and get back to you all sometime or other! It really makes her day!

Caring for her has taken over everything and not being able to work has made things very difficult here. We were hoping to upgrade our car this year. It’s very old anyway and all the journeys to hospitals have taken their toll! But it will have to do for now. It has taken a lot this year just trying to keep her warm through the winter!! But just to see her smile makes it all worth it!

And thanks to Vikki and everyone for their time with Post Pals! It’s really great!