Callum

12 June 2012

NB: Please do not send sweets

Callum and his family are Christians.

Story written 2005

Callum was born at 35 weeks by emergency Cesarean and it was instantly apparent that Callum had problems. He was immediately transferred to the special care unit where he was put in an incubator and ventilated. Callum was critically ill and not expected to survive. But Callum was a fighter and after 48 hours started to turn the corner. Callum spent eight weeks in special care, where at six weeks after lots of tests, Callum was diagnosed with a genetic syndrome called Prader William syndrome. I had great difficulty accepting this at that time and even now I sometimes struggle with the diagnosis. But on the whole we take one day at a time.

Callum as a baby was very floppy just like a rag doll and he did not support his head until he was one. He didn’t cry and barely woke up, he had to be woken for feeds. But as the months went on Callum became more alert and responsive. Callum started to support his head at one year, was sitting by 20 months and could walk at 2 years 10 months. From the age of two onwards an insatiable appetite kicks in and people with P.W.S feel constantly hungry. They cannot satisfy their appetite and if allowed, a person with P.W.S can eat themselves to death. Over the last six months or so Callum has shown a increased interest in food and has asked for snacks. But to date Callum has had a very healthy diet with only three meals per a day and no extras. I just hope I can keep things this way so Callum stays slim and healthy.

Callum for the past year has been having a nightly growth hormone injection, as adults with PWS tend to be on the short side with small hands and feet. The growth hormone should allow Callum to be of average height with normal sized hands and feet though. It also has other benefits including increased energy and can help with muscle tone. Callum has grown 9cms the past year and is catching up with his peers and his feet have grown 3 sizes. Callum has learning difficulties and delayed speech and he attends a special school three days a week. He is due to start mainstream two days a week in September and we will see if a dual placement works for him.

Callum is a very happy sociable little boy and has given our family so much. We are very proud of him and all he has achieved to date. Callum has worked very hard over the past four years.

Update 6th May 2008

Callum has been really well lately, but has put on a bit of weight. His interest in food is a lot stronger now, although it is still manageable.

We have just been to Wales for a week which was really lovely. We stayed in Cerbra’s holiday home.

Update 31st January 2008

It has been a while since i wrote but have been really busy with Callum as he has had a small accident. On the 9th December on the way to a Christmas party Callum caught his little finger in a fire door. He broke his finger and the nail came out of the nail bed. I took him straight to the hospital where he had to have a small operation to put the nail back in the nail bed. He was put straight on antibiotics but the finger became very infected and all through December except for Christmas day we had to go to the hospital to have finger checked. Towards the end of December, Callum was given a third course of antibiotics from the hospital and then finally was discharged from hospital on the 8th December. After a couple of days though the finger started swelling again and was extremely red so we went to his doctors and he was put on a 4th different antibiotic, but towards the end of the week course the finger started looking worse. Well, he is now on a 6th course of antibiotics and the finger is looking a bit better. We are due to go to Wales on Saturday so we saw the doctor on Monday and he has given me some antibiotics for Callum to take while we are in Wales. I’m going to see the nurse Friday evening just for her to check his finger before we go.

Other than that Callum has been really well (it must be all those antibiotics). Callum is having a sleep study on 14th February and at long last we have got an appointment to see an ear nose and throat doctor on the 26th February to see why his speech is very nasal.

I know this is late, but i would really like to thank everyone for the Christmas gifts and cards.

Update 2nd December 2007

Callum has been very well and happy over the last few months. Callum saw his consultant last week and he is very pleased with his progress overall. His mainstream school have managed to get funding for a laptop for Callum to use in class. Due to his low tone he is still finding it impossible to hold a pencil and to put pressure on paper to write or form letters. He is enjoying his wheelchair and i am developing muscles in my arms. I have just bought Callum a puppy (a llaso Apso) and the puppy will be able to go out for short walks in a fortnight, so hopefully this will encourage Callum to walk more.

We wish everyone a very happy Christmas and new year.

Update 1st October 2007

Callum has been very well over the last few months, although he is still having lots of problems with his speech and low muscle tone. Callum is waiting to see an ear throat and nose consultant to see if his tonsils and adenoids are affecting his speech as his speech is very unclear. Callum was issued a wheelchair last month so this is making trips a lot easier, as more often than not i would end up carrying him, as he got so tired walking.

Update 15th August 2007

Callum has generally been very well over the last few months. His muscle tone has not improved and generally finds walking very tiring, so has just been measured up for a wheelchair. His food interest is more apparent now than what it was, but is still generally manageable. He can get quite cross when i say no but i am firm and do not give in. Thankfully we do not have this situation often at present.

Update 3rd June 2007

Callum has been really well throughout the winter months. He had just a couple of chest infections which he got over quicker than past ones. Since i last wrote his interest in food has stepped up a notch but i am still finding it manageable. His latest trick after eating something and finishing it is to say ‘i did not like that mum i better have something else’ to which i say no! Sometimes he accepts this, but other times he gets a bit cross. His latest sleep study and thyroid check where both fine which we are thankful for as it is very common for children with P.W.S. to suffer with sleep apnea.

Update 1st December 2006

Callum is very well at present after his spell in hospital. Growth hormone is going very well, Callum saw his Endocrinologist last week and he is very pleased with his progress height wise as he is now average height for a five year old. There is still not much improvement in his muscle tone though. Callum and I would like to wish everybody a very happy christmas and a massive big thanks to everyone who has written and sent cards to Callum.

Update 24th November 2006

Up until last week Callum had been really well but last Tuesday, at school, Callum started vomiting. It is very rare for somebody with P.W.s to vomit and can be very serious. Callum’s school phoned an ambulance and he was admitted to hospital where he spent 48 hours being monitored and trying to find the cause of him being sick. He had scans and x-rays and was seen by doctor after doctor and surgeons but nobody could find the cause. Children with P.W.s have a high pain threshold and this can mask the symptoms of a serious illness and it might not be until they vomit that anyone is aware of a serious illness which can be life threatening. On discharge from hospital all the doctors agreed on one thing – they had no idea why Callum was sick. Callum is fine now and all he talks about is having another ride in an ambulance.

Update 20th October 2006

Callum has been very well over the last month, he has just had a small cold which didn’t last too long. Callum is waiting to have a bone scan as the growth hormone he is on can age his bones, so hopefully this will be done next month. Callum’s interest in food has stepped up a notch – he keeps saying he is not full after his meals and will often say ‘i havent had my tea yet mum’ more or less straight after lunch. I expect this is the start of how things will be. Callum talks about food quite a lot but hopefully i will be able to manage it and it will not affect his health too much.

Callum has a new Computer which Cerebra (a charity for children with brain injured or brain related illnesses) bought for him. He loves it and has a special mouse so he can play lots of games and do school work.

A big thank you to Julie and Alan this month.

Update 3rd August 2006

Callum has been really well and happy over the last couple of months. He has just started swimming lessons to hopefully improve his muscle tone which is still very poor. He is now showing a great interest in food and will say after a meal ‘i am not full yet mum’ so it seems his food awareness is now becoming an issue. We would like to say a big thank you to Julie and Alan Barret for all the cards and gifts they have sent.

Update 6th June 2006

Callum has been quite poorly over the last two months; he has had one chest infection after another but seems to be on the mend now. He spent his birthday in bed though.

I would just like to say thank you for Callum’s cards and gifts that have been sent to him. Callum loves all the cards he gets; he keeps them in a pile and often takes them out in his backpack.

Update 30th March 2006

Callum has been really well this past month. He has been working very hard with his speech therapist and his speech is really starting to develop. Callum saw a dietician at school last week and she is very pleased with his weight – it is spot on for his height which is really good for someone with P.W.S.

Callum has had lots of post this past month. So lots of thank you’s to all who have sent post and gifts to him. A very special thank you to Stephen who sent Callum a wonderful Corgi Old Fashioned red bus. Sue, we do enjoy your little notes you send Callum. Kate Dee, thank you once again. Emma and David – Callum has had great fun with the medal you sent him. Nicky, we tried so hard to do the Maze game and thank you once again to everyone else.

Update 3rd March 2006

Callum has been very well over the last month. Callum saw his consultant on the 28th Feb and he was very pleased with Callum’s progress over the last six months. His speech is improving slowly but surely. His daily injection of growth hormone is still working well as he has grown quite a bit and is now average height for his age, which is fantastic as a year ago before starting G.H. Callum was well below average for his height.

Thank you for my cards over the last month. A big hug and a sloppy kiss for Kate Dee for the great bus and the fantastic London bus snow globe, which will be taking pride of place in my bedroom (Callum has not stopped shaking the snow globe he really loves it, thank you so much Kate). Also thank you to Tez for the letter and for Splash the Orca.

Update 27th January 2006

Callum was so glad to go back to school after the Christmas holidays. After being back a few days Callum became unwell with a temperature and now has a chest infection. He’s now on his second course of antibiotics; because his very poor muscle tone means he cannot cough to clear his lungs. He also has an upset tummy which i think is from the antibiotics. Callum is a real drama queen when he is ill and keeps saying I am ill mum.

On a different note, Callum saw his Endocrinologist last month and he was very pleased with Callum’s progress since being on Growth hormone. His results from sleep study where fine and his thyroid levels where fine as well.

A big thank you to everyone who has sent cards to Callum.

Update 4th January 2006

We hope you all had a lovely Christmas. Callum sent his elf a Christmas card thanking her for her wonderful kindness. I would like to say i was completely overwhelmed by all the parcels and cards he received. Thank you once again everybody.

Update 8th December 2005

Callum has been very well and we have had no problems at all. Callum is due to see his Endocrinogilist 19th December to check all is well with the growth hormone which Callum has daily by injection form. Callum had lots of cards and postcards and gifts last month which we would like to thank everyone for. He loves his Post. Callum is excited about christmas.

Update 9th November 2005

The colder weather is here and unfortunately Callum seems to get lots of coughs and colds in the winter. He currently has a chest infection and due to his poor muscle tone he cannot fight these coughs and colds. He is now on his second course of Antibiotics, but this does not stop Callum smiling and laughing.

Thank you very much for all the cards, letters and gifts Callum has received.

Update 26th September 2005

Today Callum received his lovely posty project and would like to thank the lady who made it. Callum will have great fun writing in it. He would also like to say thank you for all the gifts and stickers he has received.

Update 7th September 2005

We have just been in hospital for a sleep study and to have Callum’s thyroid checked so waiting for results of them at the minute. Callum is due to start his new nursery at local mainstream infants tomorrow; he will be doing a dual placement with the special school he currently attends.

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Bethany B

12 June 2012

Story written 2004

Bethany was diagnosed with cerebral palsy when she was nine months old. She was a premie baby born 8 weeks early. She was then diagnosed with epilepsy and registered blind before her first birthday.

In 1998 she had a peg fitted to feed her through and then in 2000 she had surgery on her left hip. After surgery she suffered 3 fractures to the left leg. She was diagnosed with Osteoprosis.

In 2001 she had surgery on her stomach to stop her vomiting, in Great Ormand Street. Then in 2003 she had surgery on her right hip which sadly did not work and left her in a lot of pain. She had surgery on the hip again at Bristol Childrens Hospital in November 2004. She will be back in in December to have her cast removed and hopefully find out that the surgery has worked, although she will be prone to fractures for twelve months.

Bethany is a happy go lucky girl. She never complains about any of the pain she is in.

Bethany doesn’t have use of her hands, but can pass small objects. She has visual optic nerve damage and is totally dependant on carers.

Story update 2007

Bethany has had six years of surgery and we are hoping she does not have to undergo any more. Her epilepsy is starting to cause a real problem at the moment. They are bigger and last a lot longer than before. She is still a great Westlife fan and just the mention of Mark’s name makes her go all giggly. Life is getting harder in the fact that she is much bigger and not having every thing to hand when we go out or away makes life difficult. She still needs to attend Bristol Children’s Hospital and Frenchay for regular check ups. Her right hip seems to be popping in and out of its socket which is a real pain as she had a operation in 2000 to put it back in. We will leave well alone as it does not seem to be causing her much pain. She has an eye for the boys at the moment and is very cheeky.

Update 14th March 2010

I think it is time for Beth to move on from Post Pals now. She is 18 and although she is still having health issues, I just think she is growing into a young lady who is more into her TV, music and boys.

We can never thank you all enough for the wonderful cards and gifts she has received over the years. We have made great friends with a lovely American lady who we will always have contact with.

I would like to thank everyone that sent post for her birthday, Christmas and world book days.

You are all great and I wish you every luck in the future.

Update 2nd November 2009

We have had quite a few issues with Beth over the last few months. For some reason Beth has stopped eating enough for her to get all the nutrition she needs. She is now being pump fed. Her VNS was turned back on as we had no choice due to no medication working for her seizures. Sadly the last ramp has made her voice slightly croaky again and liquids are a slight issue as she is coughing yet again. It sounds like the VNS is causing these issues as I had thought in the past. Where we go now I am unsure.

On a happy note, Beth is going to Orlando to celebrate her 18th, where have those years gone to. She will be flying upper class as she does not sit well enough for economy. We decided it was her 18th and she is hard to buy for so why not. We will be out there for 3 weeks.

Update 9th August 2009

Beth is having a few problems with seizures at the moment. She seems to have stopped eating as much so is being topped up with peadisure as weight is falling off her. We are all struggling with the school holidays and the process of her going from children to adult services.

Update 2nd July 2009

Sorry for late updates but it is manic here with Beth transferring to adult services this year. There is so much work to be done. It worries us that we will miss something.

Beth is fine. She is still having the odd seizure, but has had a good couple of months. We are all looking forward to school holidays so we can chill.

We are planning for her 18th birthday at Walt Disney World. Beth has a real treat with flying upper class. This is because she can not fly economy any more due to poor balance and so we need her to lay flat. That’s not until November, but she has lots of theatre shows to see that will keep her going.

Update 1st April 2009

Beth has had an ok month. We’re still waiting for tests to be done for her problem with swallowing liquids. We are run off our feet with appointments for her transition to adult services. It’s hard going.

Update 4th March 2009

Beth has had quite a few seizures this month. She needs to under go some tests due to her being unable to swallow liquids. Her vns has now been turned off and she will start a new medication soon.

Update 1st February 2009

Beth has been having some side affects with her VNS and we really need to chat to the doctors about it. We’re not sure yet what they will do, but we have basically had enough of them as they are not fair on her, so we may request they turn it off. This will be a real disappointment. She has had some seizure activity too this month.

Update 2nd January 2009

Bethany has had her surgery to re-site the VNS. Sadly and as usual, all did not go to plan. Firstly, they could not find a bed for her even though we were half way there (phoning after 11.30am and being there by 2pm is not possible from Cornwall). We decided to carry on and would go shopping so not to waste a journey.

Before we left, her respite home had said she was not too happy about being moved, which was suspicious. When we got to the new shopping centre we went to change Beth and when we moved her she screamed very loudly. We made a visit to the children’s hospital to be told she was too old by a week. We went straight to BRI and i must say they were fantastic. They did lots of tests and said they thought the femur was catching against the pelvic socket again.

We then had a call saying they had a bed at Frenchay for her. BRI contacted Frenchay about giving Beth a nerve block whilst she was under and they agreed, but when we got there they said she was too complex. Thankfully we have not seen a problem since. It’s a bit strange, but we are counting our blessings. She had surgery the following morning which should have taken 1 1/2 hours but it took 4 hours. We were all concerned; apparently the wire had broken so they had to redo the whole procedure from scratch. They then had her in recovery for 3 hours as there was no bed for her. We were finally allowed home the same evening, although it was rather late when we did get home. Anyone that spends time in hospital will understand the urge to leave no matter how far you have to travel.

Bethany then developed an infection in two of the three scars which cleared up with antibiotics. Sadly the scars look like train lines and we are not happy. The VNS is still switched off and we are waiting for them to turn it back on. We have to start from the beginning again which is a pain. She has also had some bad seizures over the last three days. We are going to Bristol again on Wednesday for an outpatient appointment to check her spine.

We would like to thank Post Pals, Marcene, Julie, Judith and Clare for all the lovely gifts Bethany has received for her birthday and Christmas. If there is anyone i have forgotten i am very sorry, but a big thank you to you all.

Update 28th November 2008

Bethany went to spend sometime at the local college today. She was a little quiet but said she liked it.

She is going into hospital in a week to have the VNS replaced to where it should have been put in the first place.

She is also looking forward to her birthday on Monday; i can not believe she will be 17.

Update 2nd November 2008

Bethany has had an ok month and her seizures are much the same.

Update 28th September 2008

Bethany is having a problem with her seizures. We are going to Bristol in a couple of weeks to look at having the VNS put were it should have been to begin with.

We have just had our first visit to Little Bridge House which is a children’s hospice. We had a lovely weekend and all feel a few pounds heavier.

Sadly, two of Bethany’s cats passed away in September. They were both very sudden and unexpected. This upset Bethany a lot.

Update 30th August 2008

Beth’s seizures have not been good at all. We also learnt that the surgeons put Beth’s VNS in the wrong place that is causing no end of problems. It looks like they will have to redo the surgery.

Update 31st July 2008

Bethany has not had a good month due to really bad seizures. They are becoming quite worrying.

She has just been offered a place at Little Bridge House. We are all looking forward to our stays there.

Thanks for all cards and letters.

Update 1st July 2008

Bethany has had a good month, although she has had quite a few seizures. Her vns has now been switched on although we are not allowed to use it until the middle of July.

We have been to see Westlife in Cardiff and she had lots of fun at the concert.

Update 9th June 2008

Bethany has now had her surgery. The VNS has been fitted and on the 20th June it will be turned on. Her spine is fixed which means she can not be straightened. This is good and bad. It’s bad as nothing can be done now but good as we do not have to make any choices and wonder if we chose right.

Sadly the Westlife concert was cancelled to a later date but she did get to the Boyzone concert which she thoroughly enjoyed. It was hard work for me as she is getting bigger and it was uncomfortable for Beth due to such a long journey. This is now something that will not be possible in the future, which is quite sad but that’s life.

Thanks everyone for your kind cards and gifts.

Update 30th April 2008

Sadly, Bethany has had some more seizures and they have not been very nice. She will be going into hospital on the 4th of June to have a VNS fitted and for the orthopaedics to look at her spine.

In the meantime, she has an exciting few weeks as she is going to see Westlife and Boyzone in concert.

Thank you everyone for your cards. Bethany loves opening them.

Update 30th March 2008

Bethany has not had too bad a month. She has had another seizure and we should be hearing any time now about having the vns fitted. She also had a visit to the dentist and they said her wisdom teeth are coming through. Unfortunately her body seems to have gone over again slightly so we guess this is her spine again. She was fitted for a new wheelchair which we collected last week but it seems too small for her. She is not happy sitting in it for very long so we are trapped in the house which Bethany hates. She is very excited though as she had Westlife and Boyzone tickets for Easter.

Update 28th February 2008

Bethany seems to have had a settled month which is good as she has had a horrible time with seizures of recent.

Thank you all for making Valentines day really special for her.

Update 1st February 2008

We visited Bristol this week and sadly it was not good news. Bethany has pelvic tilt and the doctors are unsure why. What this means for Bethany we are unsure of. The doctors are going to having a meeting over this. Her seizures are still bad and we have had a new drug introduced for her. Only time will tell if it works.

Update 2nd January 2008

Bethany turned 16 in December. Where does the time go! I am sorry to say her seizures are not very good at all. She has to have rescue meds daily at the moment and this is not good.

We have just come back from Orlando. Bethany loves it there, but sadly this was our last trip, as Bethany did not travel too well and had a lot of seizures out there.

I would like to thank everyone who sent cards and gifts for Bethany’s birthday and Christmas. A special thank you to Marcene Lee, Kate Dee, Judith and Julie Barrettt. You have all been so kind to Bethany. Thank you.

Update 30th November 2007

Bethany is having a lot of bad seizures at the moment. The doctors want her to have a vns, which will mean a small operation. There is a 5 month waiting list.

She has been busy in school and we are going to Orlando on Friday for two weeks.

Update 30th September 2007

Bethany has had some really bad seizures this month. Apart from this she is really happy and gaining the weight she much needed.

Update 30th August 2007

Bethany has had a good summer holidays. We have done lots of day trips. We went to see Beauty and the Beast last week in Plymouth and she really enjoyed this. Sadly, her seizures are getting worse. We are going to see the doctor next week.

Update 30th July 2007

Bethany has had some bad seizures this month. The doctor has now put her on the list for Vaguel Nerve stimulator. The list is about 18 months long. Apart from this she seems happy and is enjoying an all terrain buggy that Victoria and David Beckham bought her. We were able to take her right on the beach and she enjoyed hearing the sea.

Update 10th July 2007

Victoria Beckham’s mum rang here tonight as we applied to the David and Victoria charity. They have agreed to buy Bethany an all terrain buggy for disabled.

How cool is that!

Update 2nd July 2007

Bethany went to Bristol children’s hospital for some possible surgery on her right hip again. Thankfully the surgeon gave her an injection for pain relief which should last 6 months. We came home the following morning. We were all very relieved and happy. It seems to be doing the trick.

She is in her school play ‘Shrek the musical’ this week. She will be Maid Marian.

She had 1 seizure last week which was a shame as she has not had one in two months.

She is in a really good happy go lucky mood at the moment and is looking forward to the long school holidays.

Thanks to all for cards and gifts.

Update 4th June 2007

Bethany is due to go into Bristol children’s hospital on 19th of June. The surgeon is going to put some dye into her hip to see what is happening. He will then decide what to do from there. We are not sure how long she will be in for. We have not told her yet as she will just worry.

She has had a few minor seizures but nothing major. The doctors have started to reduce her epilepsy drug as they want to get her off it again.

She has put on a little weight which is good news.

Update 1st May 2007

Bethany has had to go to Bristol for an emergency outpatient appointment. She has had some pain in her right leg again. Sadly the bone has grown back, so we are waiting to go in as an emergency. They are going to have a look whilst Bethany is asleep. They think they will have to remove more femur and put her in traction. She has had a couple of seizures again.

We’ve also been to London Wembley arena to see Westlife in concert.

Update 2nd March 2007

Bethany seems to be in some pain in her right leg again which is very worrying. Her eyes say it all when we move her. She has had 4 seizures. She is her happy go lucky self though.

Update 8th February 2007

Bethany is doing so so this month. Her only real problem at the moment is her seizures which are really horrible when she gets them. She had 4 last week. She really gets upset with them. Apart from this she is really happy and cheeky.

Thanks to everyone who sends cards and gifts to Bethany. They really make her day.

Update 30th December 2006

Bethany spent a wonderful ten days in Orlando for her birthday. She really enjoyed all the rides although cat in the hat was her personnel favorite. We met up with Marcene Lee and Jennifer. We have not had so much fun and laughter in years. If we mention Marcene to Bethany she starts laughing. We met Marcene through this site.

She met with her surgeon who operated on her back. He is very pleased with her and we do not need to go back until Jan 08.

On a bad note her seizures have been playing up and she has had some really bad seizures. Her worst was on Christmas Eve.

We would like to thank everyone for the cards and gifts Bethany received for her birthday and Christmas. A very big thank you to Marcene lee and Jennifer for coming all the way from Atlanta Georgia to Orlando and spending four wonderful days with us. For all the gifts you gave to Bethany, Lindsey and I. You are a true angel.

Update 11th December 2006

We have just had a great holiday with Bethany in Orlando. She really enjoyed it this year. We meet up with Ms Marcene Lee who we meet through this site. Her daughter Jen came as well. We had great fun.

Bethany is doing well although having a few seizures.

Update 1st November 2006

Bethany is enjoying being back at school. She did have a large seizure a couple of weeks ago though. We are looking forward to going to Orlando at the end of November. We will be meeting up with Marcene Lee, a dear friend we meet through post pals. Her daughter Jennifer will also be joining us for 4 days.

Update 30th September 2006

Bethany is great at the moment. We are really having a good spell. She loves every moment of school and is doing really well. All the doctors are happy with her. We are doing a drug reduction at the moment as one of the drugs is not working as well as it did. She is on a new one and we are hoping this will not cause a problem. Thanks all.

Update 31st August 2006

Bethany is doing really well at the moment. She is looking forward to school and our upcoming holiday to Orlando later in the year. She enjoyed meeting Westlife and their concert. She sang and screamed all the way through. She was very quick to blow Mark a kiss and he made her day by kissing her on the check. Thanks Mark if you read this. You have made her truly happy.

A big thank you to all who have sent things to Bethany, especially Marcene and Julie. Thanks to all who nominated her to meet Westlife.

Update 29th July 2006

Bethany is doing really well. We can not believe she had major back surgery 11 weeks ago. She is so happy and all the doctors are happy with her. She won a contest to meet Westlife from our local radio station Pirate FM. Thanks to all that nominated her.

Update 30th June 2006

Bethany is doing really well. She now has her new wheelchair and is back to school part time and she loves it. We are now able to go out for around 2 hours at a time which is great.

Update 31st May 2006

Bethany is doing really well. She is still on some pain relief although we are reducing this. She is still not eating a great deal but this is getting better. We are going for a wheelchair fitting this week but will have to wait a month for it. We did buy her a special needs baby jogger on eBay and i must say this was a great buy although a tad too small for her. It will get us through this period though and i will certainly be looking at getting the next size up as they are so light to push. They are great on sand and uneven ground.

Thanks to all who sent Bethany gifts and well wishes. We are looking at her doing some time back at school before the long summer holidays. We are really looking forward to life getting back to normal, what ever that is. She is going to see Westlife in concert in August. They are doing a concert in Falmouth. We are taking her to Florida in December as a birthday treat. We hope to meet up with Marcene who has been a great support to us all and a true Angel. We met her through this site and will now be long term friends.

Update 16th May 2006

Bethany just spent 24 hours in our local hospital. She is severely constipated and has an ear infection. They were also concerned with her chest x ray. We are home again. I think we will get there but it will just take a little extra time.

Update 12th May 2006

Just to let you all know we are home. The operation went well and Bethany seems to have grown 2inches. We did have a problem with her bowel as it stopped working. She spent 4 days in HDU. She was starved for 48 hours and thankfully the bowel started working. A week to the day and we are home. She is in some pain and her back is badly bruised. She has been a very brave girl.

Update 27th April 2006

Bethany is very scared about her upcoming surgery. We do not know what to do for her to calm her fears. When we come home from hospital she will be stuck in doors for at least 8 weeks as she will need a new wheelchair. Hers will not be the right shape and due to her legs being different lengths an ordinary wheelchair will be no good. She had another major seizure this week; it lasted 3 to 4 minutes. She had a visit to the dentist which was very hard going; she will need to have two teeth filled and is on the waiting list for our local hospital as she needs a general anesthetic. This will be later in the year.

Update 15th April 2006

Bethany will be going in on the 3rd May to have her operation on the 4th of May. Lots of prayers and TLC please that the operation goes to plan and that it does not get put back.

Update 30th March 2006

Bethany is doing a little better this month. She is gaining some weight and is feeling a little heavier to lift. We have heard that her back surgery will be done by the end of June. We will keep you posted on this when we know more. Thank you again for all the cards and gifts. They truly put a smile on her face.

Update 27th February 2006

Bethany has had some seizures and her weight is not too good. She seems to brew her seizures and when this is happening she really isn’t good and she just wants to sleep. Her scoliosis is getting worse too, she must be so uncomfortable sitting and when in bed. She is now back on pump feeds, we are doing this slowly to begin with but hope to build her up.

Update 26th February 2006

Bethany had a major seizure on Thursday morning. She was in the bath at the time and lost consciousness, it lasted 2 minutes. She was taken to hospital by ambulance. She had a large one 3 weeks ago and the odd twitch since. She stayed the night and is now home. They are also worried about her weight as she weighs 21kg. Not a lot for a 14 year old. She will now be fed over night by a pump feed. She seems happy now though.

Update 30th January 2006

Bethany is not too bad at the moment. Her scoliosis is getting steadily worse by the day though. She has changed rapidly since the surgeon last saw her. Life is a bit bitter sweet at the moment as although we do not want Bethany to have any surgery, as she has had 5 in the last five years and all have been major, the sooner the better. This is having such a huge affect on her life as she is not able to do the things she likes to. Her new wheelchair she had in August is a completely different shape to her body, so we are not able to go far. She had a major seizure last weekend and then had several small ones through the day. This is such a shame as she has been very well controlled all but the odd twitch. It has not really come at the best time. She has had a few doctors’ appointments and the most worrying thing about them has been how Bethany has been at the appointment. She has been a very frightened child. She’s been shaking and whimpering throughout, so much so that the doctors decided not to examine her. She had three nights of dreaming in her sleep. She was not waking but crying and moaning out loud. I am very worried about this as I worry it might have a great effect on her wellbeing when she has surgery. She is still at school which is great. She did have a few days off though as she got a very mild infection of impetigo.

I’d like to say thank you to Marcen for being a wonderful friend to Bethany. You are truly an angel sent from god to us. Thank you to everyone else as well. I am sorry we have not got back to any of you but our lives are very busy at the moment.

Update 30th December 2005

Bethany has had a lovely Christmas and was thankfully healthy for the first time in 2 years to enjoy it.

Thank you to all of you who sent Bethany cards and presents for her birthday and Christmas. We’d like to wish you all a happy new year.

Update 18th December 2005

Bethany had her appointment in Bristol and she will be having surgery on her back. She is now on the waiting list for surgery and it should be within the next 6 months.

Update October 20th 2005

Well she is still in school full time. Which is great, she is enjoying her time there and I do not know what to do with myself.

We have an appointment on the 7th of December to see the doctors about her back in Bristol and we are due to see the Orthopaedic doctor on the 8th of December. So we shall have a night in Bristol. It will be good to find out if it is best for her to have surgery or not. She is waiting to see the pain team in our local hospital. We are going to try to work out what is the best way to deal with her pain.

She is really looking forward to having a great birthday and Christmas this year as the last two have not been to good due to her being in so much pain. So we hope she keeps on going as she is even though she suffers with pain in her back it is not as bad as she has had in the last two years.

Thanks for all the e mails, cards and gifts.

Update September 25th 2005

Bethany is back at school full time and although she is enjoying being with her friends she is in a lot of pain. We will need to keep a close eye on her.

Update August 16th 2005

We made it to Orlando and stayed in Disney all star music. The weather was warm. Over all Bethany enjoyed her holiday but sadly she was in a lot of pain. On one occasion we had to sedate her as the pain relief was not working. We did all the disney parks. She really enjoyed the shows. We also did some good shopping.

She is now back to school full time and enjoying it. She is at respite at the moment as we are having the bathroom adapted for her. She has a lovely Hydrotherapy bath that fundraisers bought for her.

She is on a waiting list to be seen by a back specialist at the Bristol children’s hospital. Sadly her back has got worse and her left leg is also pulling over to the right due to her scoliosis.

On the whole she is happy when she is not in pain.

Update August 25th 2005

Bethany is doing well at the moment. She is starting to put some weight on. She is really excited about her holiday to Florida in 8 days. All keep your fingers crossed for her to stay well for the trip and when she is there. Thank you for the cards and gifts. Thank you Marcene for your continued support.

Update July 2nd 2005

She is a lot better although still a bit tired and in a small amount of pain.

Update June 23rd 2005

Just a quick note to say Bethany is now home. She has had a very hard time but is getting a little better everyday. She has a nasty pressure sore on her elbow and her stomach is sore. She is eating tiny amounts of food. She
has lost a lot of weight. It was a very big shock for us all.

Update June 21st 2005

Bethany is still at Bristol Children’s Hospital. She has been a very brave girl. She will probably be there for at least another week. She is starting to ask for food, but has to wait until they know her bowel is working. She is much more aware of her surroundings and has listened to lots of stories over the weekend. She is fairly comfortable and we have seen some of her beautiful smiles. Just hoping she will be well enough to come home soon.

Update June 15th 2005

Hi, this is Bethany’s aunty, just letting you know that Bethany had a three and a half hour operation at Bristol Children’s hospital last night. She had to have her bowel untwisted and part of it removed. She will be at Bristol for a week and probably home then to convalesce. She is more comfortable since the operation but very quiet.

Update June 14th 2005

Just to let you know Bethany is unwell and in our local hospital. They think her small bowel may of stopped working or that she has a blockage. She will either stay in Treliske Hospital on Fistral Ward or go to Bristol Children’s Hospital.

Update June 10th 2005

We went to Bristol today to see the orthopaedic surgeon who operated on Bethany in November. He is really pleased with her progress and said he did not expect to see her this well so quick, which is great. We also talked to him about the back surgery. He feels it is the best thing for us to do for Bethany’s sake. He says there is a minimal chance the rods may come lose but no more than anyone else. So we will be going ahead with surgery. We will be having a holiday first though, as Bethany has had 4 major surgeries in 4 years and this will be her 5th in 5 years. We are going to go to Walt Disney World in Orlando. We booked to go in December for her birthday, but will now be going in September as she would of had surgery by December and will be convalescing.

Thank you all for your cards and for the lovely ones that were made for the competition. They were all winners in our eyes.

We will let you know when she is to have surgery.

Update May 20th 2005

Bethany has had her plaster off and is back doing 2 hours a day at school. She has a one to one and a special time table due to her being vulnerable. She is enjoying her time at school.

We went to Exeter hospital to see the Doctor about her back. She sadly has a 90degree Scoliosis due to having no hip and because when she has a growth spurt her spine could curve any were up to 180degree. She does not sit well at the moment due to pain from her back and difficulty with seating and they are telling us this will get a lot worse. We now have to decide whether to allow them to go ahead with surgery on her back. This would be major surgery and we are at the moment trying to decide what to do. It is not the easiest of decisions we have had to make. Dad thinks we should do it, but I am not sure as Bethany has had a very hard time with the surgery she has had, but I also know life would be very hard for her if we did nothing. We will keep you posted.

Thank you all for your letters and gifts.

Update April 5th 2005

Just a quick update on Bethany. We went to the fracture clinic today hoping to have the cast removed. They did remove it and replaced it with another. A bit of a step back but thankfully all Bethany seemed to be worried about was the colour. After much debate we end up with bright green. So they are saying another three weeks. Oh well, we are all a dab hand with plaster now. We have ordered a cover for it so she can have a bath.

She seems happy enough apart from if we go out.

Her Scoliosis has gotten a lot worse and she does not sit for very long at all. They are trying to get an appointment with her back specialist.

Thank you all for your e mails, post and gifts it really keeps her smiling.

Update 4th March 2005

Just a quick note to say sadly Bethany has fractured her right leg just above the knee. This happened on monday. She went to theatre on tuesday and is in a plaster cast. This has really set Bethany back as she now does not want anyone to move her. All the work we have put in to build up her trust has just gone out the window. She will be off school for 4 to 6 weeks.

She did a week of mornings and now that’s it again. It seems to be 3 steps forward and 2 steps back.

Update 20th February 2005

Just a quick update on Bethany.

First of all her pain in her right hip is getting less and less by the day. She still does not like it moved in certain ways. It is a lot better though. We never thought we would ever be able to move Bethany without her screaming. It is just so great. We are all so less stressed. She still does not sit for very long and by 2pm is normally having her daily nap.

We went to Great Ormand Street Hospital and they were pleased with her although she has not really put any weight on. Much to be expected for all she has been through, although she seems to be eating chocolate a lot. We have to go back in a year.

We are due back in Bristol for check up in July. It is amazing we do not have an appointment for 5 months. Never been heard of before.

We have just booked a treat for her for the end of the year. She will be going to disney for her birthday.

Thanks again for all the mail and gifts she receives. She gets the most mail now.

Update 7th February 2005

Bethany went for her out patient’s appointment at Bristol children’s hospital. They are very pleased with her progress and the fact that she can now move her leg. She was not able to do this for over a year due to the original surgery going wrong. They said still to expect some pain. We will be going back in July.

We are due to go to Great Ormond Street hospital on Tuesday for a check up on surgery she had in 2002. She started part time school two weeks ago. She did two mornings but then sadly got the flu. She has been quite poorly for the last week but is slowly on the mend.

Take care and thank you all for you cards, gifts and e mails. They really help to cheer her up.

Update 11th January 2005

Just a quick update on Bethany. She has had her Spika removed. Sadly she is in a lot of pain and this has really knocked her confidence. We are due to go to Bristol the end of the month and are hoping this is normal and the surgery has worked. We were only given a 50% chance it would work so fingers crossed.

She would like to thank everyone for the e-mails and the gifts she has received. It has put a smile on her face.

Many thanks to you all.

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Ben

12 June 2012

Story written 2005

Ben was diagnosed with Spina Bifida and hydrocephalus at birth. When Ben was born the leison on his back was open, this was closed at 2 days old. At four days old he had a shunt put in situe (to drain the excess fluid from his brain) as the spinal fluid was still leaking from the lesion even though the lesion had been surgically closed.

Due to the severity of Bens Spina Bifida he is unable to use his legs and relies on a wheelchair to get around, he also has some fine motor problems.

When Ben was first born we were told that he would not sit, possibly feed himself, or even attend mainstream school. Ben now enjoys attending his mainstream school (is in the same class as Pal Nicole B) and enjoys mixing with others and Ben goes to an after school club one day a week. Ben has recently joined the local Beavers group.

Updated September 2007

Ben has “Moved on” from Post Pals. Thank you to everyone who has sent him post over the past 2 years.

Update 30th July 2007

A huge thank you to Julie and Alan for the continuous smile they put on Ben’s face.

Update 6th June 2007

Ben is now home from sunny Spain. We had a fantastic holiday, it was the break that we all needed.

Ben found the different culture a bit strange, but he soon got used to it. We went out for meals every night but Ben didn’t like the fact there were lots of street sellers around as he said they were bugging him.

Update 18th May 2007

Ben is slowly coming to terms with the sudden death of his dad.

Ben has just been doing a week of sats tests and has found it very difficult and has been very tearful about it today.

On wednesday Ben is flying out to Spain for a weeks holiday with my new partner, his daughter and myself and we are all really excited.

When we come back, Ben will be joining cubs (the next step up from beavers and I am in the process of looking into changing Ben’s school as the older he is getting, the more help in school he is requiring.

I had the results back from Ben’s fine motor tests and even though his chronological age is 8 yrs and 5 months, his developmental age has been put at 5yrs and 2 months.

Update 15th January 2007

Ben has re-joined Post Pals, he is doing well and is a lot bubblier now.

Update 28th June 2006

Ben is still doing well in school and we have some brilliant news for post pals!

Ben is going to be getting 2 brothers and a sister. I have met a new man, who loves us both dearly and we are going to be getting engaged at Christmas. Ben’s new brothers and sisters are older than him, 16, 14 and 10. I hope our news makes you smile as i can’t stop smiling at the moment!

Update 2nd June 2006

Ben’s health hasn’t changed at all. We had a scare the other evening, i had to rush Ben to A&E with pains in his right kidney (it’s his bad kidney) and he was becoming distant and very tired. The consultants were concerned that Ben’s right kidney was possibly starting to fail and he has now been put on strong antibiotics 3 times a day.

Update 27th February 2006

Ben would like to say thank you to everyone who has sent him post this month.

Update 22nd February 2006

Through the problems we have been having with Ben’s school, I got a speech and language adviser to see Ben, and she has picked up that Ben has got learning disability as well as everything else. It also looks as if he has got a condition called chiari malformation it affects children with hydrocephalus and when their cerebellum is deformed due to the hydrocephalus. This is not common but does happen once in a while. Ben might out grow this or he might have it for life. So this means that Ben can only have smooth, soft textures and if we have proper meat (not packet) Ben will have to have his slightly pureed.

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Ayesha A

12 June 2012

Story written 2009

Ayesha was diagnosed with a rare auto-immune disorder called Wegener’s Granulomatosis in October/November 2008 after 3 years of being misdiagnosed with severe asthma. This disease is quite rare and she is quite a rare case.

She has had chemotherapy and high dose steroids to treat it and it now seems to be in remission. However she has permanent lung damage and a very low lung function from when the disease was active. She still has maintenance chemotherapy and steroids to keep the disease in remission. However she still has a lot of problems with her lungs and she requires a high flow of oxygen 24/7 and a type of ventilator overnight. She uses a wheelchair when out.

Currently we have been refused a lung transplant due to the rarity of her underlying disease and it not having been performed before in Wegener’s. However, she been to see a specialist in her condition and the lung transplant team at Great Ormond street. The specialist seems to think it may be worth the risk to try and transplant and has asked Newcastle transplant team to consider if they will asses her now since he believes the underlying condition is in remission and will not return post transplant which is a main worry. So as it stands we are waiting to hear from the lung transplant boss at Newcastle for his views.

Update 1st March 2011

I received the call for transplant on the 13th of February at 12.26 am and went to theatre at 6.25 am. I was in ITU for 4 days and am now on the regular transplant ward. I’m moving in the right direction with some good days and some bad, but overall improving.

I think it is time to move on from Post Pals now as I feel someone else may benefit from the service more. I hope that is okay and thank you for all the support.

Update 30th September 2010

I had a very quick admission to hospital for only a few days, which was really good considering I was very sick when I went in! Also, I’m due to have a portacath inserted ASAP.

I have started 6th form which is a lot of hard work. I am taking Biology, Chemistry, Physics and Maths A-levels. I have fallen back a fair bit already and hope to catch up soon!

Thanks to whoever sent Sadiya an animal card game from Amazon and the Wii game.

Update 30th August 2010

Hi sorry for not updating in a while. I have some fab news though – I got listed for transplant on the 23rd of July!

Things have been fairly stable and I’ve been spending lots of quality time with my sisters over the summer holidays. We have been to Center Parcs and Flamingo Land which was a lot of fun.

I also got my GCSE results and I did very well with grades between A* and B. I’m going onto A-levels and hope I get my transplant soon so I can go to sixth form more. I also have my driving test in a few days time!!

Update 3rd May 2010

It been a fairly settled month and things with the transplant are slowly moving forward (there are just a few more tests to be done). Apart from that it has been a quiet month.

Thank you for all the birthday cards for Ayesha and Fatimah and thanks for all the birthday gifts too!

Update 1st March 2010

Everything is just the same this month and I am waiting for transplant assessment which is this month! So hopefully I should have some news soon!

Thank you for the world book day books!

Update 8th January 2010

Hello, December was both a good and bad month. I was in hospital until Christmas Eve and had quiet a nasty hospital admission causing me to end up in intensive care for a few days. However, this lead to my transplant assessment here at Newcastle being brought forward, so the ball is now rolling and I saw the transplant consultant in clinic on the 4th of January. There are still some tests to be done to rule out some further complication that could occur due to my underlying condition, so at the moment I am home again.

I had a wonderful Christmas at home and a lovely New Year. I would like to thank everyone for all the cards and gifts and thank you to the elves.

Update 10th December 2009

Ayesha is in hospital at the moment and is quiet poorly with her bad lungs.

She received some presents my mum took in for her today though and that cheered her up – I think the card said from Milly and Alice!

Update 4th December 2009

The last month has been pretty good as I’ve been stable and out of hospital. I managed to get to a Jonas Brothers concert too and meet them – it was fabulous!!

Also, yesterday I was at a Brave Hearts Awards ceremony and I won a bravery award!!

Thanks to Post Pals for the gumball machine – they have nearly all gone!!

Update 31st October 2009

I have been doing okay over the past month. I did catch swine flu but thankfully it wasn’t very bad and I was only in hospital for a day. I thought if I caught it I would be very ill because of my low immune system.

Apart from that all has been well and I am enjoying receiving cards and postcards in the post. Thanks everyone for the post.

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Armani

12 June 2012

Story written 2008

Armani was diagnosed with Neuroblastoma in September 2007. He has stage 2 N-MYC positive so is high risk. He underwent 8 rounds of chemo every 10 days for 80 days. Then he went on to have surgery in January 2008. He has also had a stem cell harvest followed by high dose chemo. He is now on retinoic acid whilst waiting to start 3 weeks radiotherapy.

Armani is an inspiration, he has continued to laugh and smile throughout.

Armani is now 23 months old and like any other 2 year old toddler. He takes his tablets without complaining and is such a brave little hero.

Update 3rd July 2008

Armani is due to start radio therapy in a few weeks time for 3 weeks, his hair has now come back and he is loving life so much. He is doing remarkably well and we hope and pray he continues to do so.

Thank you all so much at Post Pals. Armani loves to receive his very own mail in the post and the surprises waiting to be opened. You are all stars. I would like to thank Hwee hoon, Hayley Thorn, Kate Dee, Sarah, Susan, Laura H, Isobel and everybody else that has sent Armani post these last few weeks. They put a smile on his face every time he opens them. Thank you all so much for your generosity.

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Kyle G

11 June 2012

Story written 2011

It was November 2010 and Kyle was coming home from school covered in bruises, tired and not wanting to go to school (he had previously loved school with his twin sister). We didn’t know what to think but as true protective parents we immediately started on the offensive and went on a hunt for a bully that was obviously picking on him

Of course the bully didn’t exist and at the beginning of December our local GP, one of many medical heroes we have met along the way, sent Kyle immediately to Birmingham Children’s Hospital following a hastily arranged blood test. Within a couple of days we were sitting in a small private room receiving, in all our lives, the worst possible news that Kyle was to receive 3 years of treatment, during which time he may not survive, he may not get better, but he was definitely going to have many ups and downs in a rollercoaster of a treatment plan. However thanks to some amazing leaps forward in treatment since my nana died of leukaemia in the 1950’s the odds for success are very good.

We have discovered that Kyle is brave, high spirited and very comical, and he has kept our family sane throughout the first 6 months of treatment so far. His twin sister has also found great confidence and coped exceptionally well with being split from her brother and mum for the first time since they were born and has been very caring and understanding when he has been very ill from the treatment.

August has seen the start of his second bout of intensive chemotherapy, with the steroids course he is taking causing the most insatiable appetite. This weekend he has (amongst other meals and takeaways) devoured over 60 tinned hot dog sausages and 10 family bags of microwave mash (we sound like bad parents but trust me when I say when a child is on steroids he knows what he wants and woe betide anyone try to suggest anything else). Of course, Kyle and Lydia are on their summer holidays, with Lydia desperate to go somewhere but most days Kyle just can’t rouse the energy, so they are both a little frustrated. Again though, Lydia has been understanding and started to paint and paint and paint, with Kyle picking up a paintbrush, doing a few strokes, and then retiring to a chair to watch his sisters art work flourish and be glad she is there with him.

Update 12th March 2014

We have decided to move Kyle on from Post Pals. Both Kyle and Lydia love to receive their post from Post Pals but I have said that now that Kyle isn’t on his treatment that we should let other children who are going through the toughest times get the mail instead.

We really have had 3 very supported years from everyone at Post Pals and the Post Pals team themselves, I have a huge box full of every letter and card that they have received over the years and we sometimes have a look through and remember how they helped us in the darkest hours.

Thank you for everything and we hope to see you at the Post Pals party this year.

Update 3rd March 2014

Kyle and Lydia’s Christmas was excellent and Post Pals made a huge difference, with loads of cards, letters and gifts from the reindeers and Santa’s Elves. Sandwell Academies pupils chose Kyle and Lydia again and the thoughts and effort that went in to the gifts and handmade cards was amazing. The twins are still getting hours of fun out of the gifts.

New Year was a little tougher with steroids for Kyle and his now usual Highlanders Broth feeding frenzy! We also had nana with her foot in plaster to live with us for a bit.

The end of January was a landmark for us all as it was the last chemo and steroid in Kyle’s 3 year treatment for Leukaemia. Although a bout of croup for Kyle nearly put a spanner in the last part of the treatment, an extra dose of steroids saw him through! Now Kyle will have monthly blood tests for 12 months to check no Leukaemia cells re occur, then these will become less frequent for the following 4 years, every landmark bringing the odds of reoccurrence down.

Following 3 tough years, we are left with a very brave Kyle and Lydia, a firm family resolve, amazing Post Pals, both great and some not so great memories, 48 tins of Highlanders Broth, 8 tins of hot dog sausages and 3 bags of microwave mashed potato.

One month on from end of treatment, it is great to see Kyle get bigger and stronger everyday, less and less reliant on his buggy, and even biking a little further than ever. He has a rash over his face and body, but we are assured that this is normal as the chemo toxins leave his body.

Update 3rd December 2013

November was the usual roller-coaster month beginning with steroids, which this time brought its usual food cravings, with Kyle polishing off 9 tins of Highlanders Broth and 6 steak slices a day, with meals in between! Kyle has also had a bad cold so we have been on red alert monitoring his temperature to ensure that it didn’t turn into something more serious.

Both Kyle and Lydia have received loads of cards and letters towards the end of November, again from all over the world including a letter from Mrs Santa Claus! Kyle has continued to enjoy the letters independently as his reading improves and has had great pleasure reading his regular farm updates, mail from Israel, reading many messages from children from other schools sharing their support, hobbies and interests amongst many other supportive messages. Kyle has also received a gift for Christmas, which when he opened the parcel and saw that it was gift wrapped insisted that it had to go to Santa for Christmas Day. I’m sure that when I was 7 there would have been no way I could have resisted ripping open any parcel put in front of me but I guess he has built up a lot of patience during his 3 years of treatment!!

With his continued determination, Kyle has started to play football one evening after school. It is tough for him and mostly he stays in goal as he struggles to run around for the hour, but it has been great for him and so far he cannot contain his excitement every time he comes home from his game. He tells us about every kick, save and incident of every game, his only frustration is that he is unable to run as well as the others and told me that if he had a super power it would be to run super fast as he doesn’t like to be the slowest and then he would also be able to do the cross country with his sister (typically Lydia can run like a whippet!).

We were unable to get to an organised Fireworks display this year with Kyle’s cold so we had some friends around and the kids watched me set off a box in the garden and we all had great fun watching these and eating burgers.

Excitement is building for Christmas and as we are painting ceilings and walls in the living room Kyle and Lydia decided that they would set about putting the Christmas decorations in their bedrooms and much fun was had.

Update 30th October 2013

October has seemed like a long but mostly enjoyable month. Thank you to all of Kyle’s and Lydia’s Post Pals who have provided a lot of letters and cards for Kyle and Lydia, again from all over the world including Australia, USA, Canada and Israel. Kyle has become more independent with his letters and is really enjoying learning all about different countries, farming, and this month lots of new history about ancient Egyptians!

Kyle has been to a couple of Stoke games this month and is enjoying seeing a more exciting style of football this season but unfortunately with little reward so far. He has become a keen collector of Match Attax and is learning more about other football teams. We took him to the Arndale Centre in Manchester on Monday where they had a Topps Festival including Match Attax and lots of other collectible cards. He had a great time collecting some free cards, swapping his doubles and playing against the Match Attax ‘Master’ in an attempt to win a limited edition card (unfortunately the ‘Master’ was a little better than Kyle and his dad!!). The down side for us was that because they were giving away different collectible cards he has now decided to start to collect Alien Attax (Doctor Who) and Force Attax (Star Wars). I presume this is Topps desired result in giving away a few taster cards!! However we had a great day, we were there for hours swapping cards and getting close to having all the Stoke players!

Kyle has also finally started to swim without floats and Lydia is not far behind now.

In terms of treatment, he has had his penultimate Lumber puncture, which he took in his stride and steroids week was another odd one as yet again he had a tough couple of days with no particular food apart from his Highlanders Broth staple diet and Crunchies!! Yet again he has his ceaseless and uncomfortable cough which he never seems to be free from but again he gets on with it without any complaints.

Update 29th September 2013

Back to school month has been very good, Kyle and Lydia have settled in with their new teacher and are really pleased to be back with their friends again.

Their mum took them to our local shopping centre to meet Peter Andre, who was promoting his new perfumes in Stoke! The feedback was that the only person to be really impressed and star struck was mum, Kyle and Lydia were not too impressed!

We visited the Museum of Science and History in Manchester with friends and we had a great time exploring and getting involved, we even made a short lego animation.

Steroids arrived in the middle of the month and Kyle tried hard not to let them beat him but he could not make a full week in school and spent the Friday resting and recuperating with his nana. He picked up a little for his cousins seventh birthday though soon ran out of steam as the party went on, but even then it didn’t spoil it as he just sat and watched the other kids play. As soon as Sunday arrived and his last dose of steroids had gone, he started to come back quickly, and we visited Gladstone Pottery Museum – we had a great time spinning a jug and discovering the history of toilets!!!

This weekend we went conkering, I was amazed at how many huge conkers were just lying around, when I was a kid we had to work hard to get the best conkers from the tops of the trees with a stick. I guess there are too many exciting things to do these days before collecting conkers.

Kyle and Lydia have both enjoyed reading their regular updates from Dottie and the farm. They have also received a couple of really nice home designed cards too.

Update 30th August 2013

August was (as with most months) a very mixed month with Kyle and his well being. He started the month with pneumonia and spent time in hospital on an antibiotics drip and was taken off his medication for a few weeks whilst his immunity improved. Although, whilst he was poorly and in hospital it was a difficult time, when the antibiotics had cleared him up he was on top of the world, mainly because the side effects of his treatment had lifted and he was more mobile and had significantly more energy. We are all hopeful that we will see the end of Kyle’s lengthy treatment in April next year, so it was a real insight to see what a different child Kyle will hopefully become.

This lasted 2 weeks in total before he was introduced back on to his full treatment including his lumber puncture and steroid course. It was not all bad, as although his side effects returned, he was still very upbeat as we spent a week on the Isle of Bute in Scotland for our holiday. It took his mind off it all as both he and Lydia learnt to ride bikes without stabilisers for the first time!!  After this breakthrough we couldn’t get them off them during the holiday and he was able to ride the bike better on the flat than he is able to walk! Steroid food for the week continues to be Highlander’s Broth, but fortunately we took a sack full with us and they lasted until his steroids were over for another month.

Kyle and Lydia have been really happy receiving some lovely individual postcards over the summer with some real efforts put in to all the messages and drawings. They also received sticker books of their favourite characters that have come in handy for the hospital visits lately as they have both had to go as it has been the summer holidays.

Kyle and Lydia have just one more weekend left of what has been overall the best summer holiday since his treatment started and so far they are all prepared and ready to go back to school to see their friends and see what exciting subjects Year 3 brings.

Update 15th July 2013

June saw Kyle and Lydia celebrate their 7th Birthday, thank you to all their Post Pals around the world that sent them numerous cards, they really enjoyed opening them and reading them all and putting them up around the house!

As Kyle was due to be at the height of steroids on his birthday, they had their party the weekend before. Kyle had a great time with his friends discovering bugs at his bug party and Lydia created lots of fairy items with her friends at her fairy themed party, both at a local Wildlife Trust site.

Kyle had a rough ride in steroid week, so we were glad to have celebrated his birthday early. Again, no particular steroid food, but amongst eating lots of everything he devoured over 25 Crunchie chocolate bars, which was unusual as he usually goes off chocolate and sweets altogether!

We had a little break in South Wales at the end of steroid week and it quickly picked Kyle back up and we all enjoyed a great time visiting some great places in and around Tenby and Saundersfoot. One of the highlights for Kyle and Lydia was learning all about owls and getting right up close to a barn owl.

Update 31st May 2013

We went into the month of May very cautiously as it was the month of the Lumber Puncture, however apart from a day of sickness (unrelated to the Lumber Puncture) Kyle has been quite chirpy. He picked his steroid old favourite of Highlander’s Broth (for which we have to scour Stoke on Trent’s B & M shops as they are the only shop that appear to stock it) very early and also seemed open to a variety of other foods alongside this. So whilst devouring up to 8 tins a day he would also eat burgers and dinners in between!! All the food seemed to keep his strength up to enjoy things more, he still found walking hard work so we had to use his buggy and my shoulders to get him around but his mood was very positive.

Kyle and Lydia have really appreciated the many early birthday cards, a lot from schools and other clubs, which the children have put in loads of efforts to capture their hobbies and interests very well.

Update 1st May 2013

Another mixed month for Kyle. It started off great which was really lucky for us as we managed to get the absolute maximum enjoyment from our Easter break to Blackpool. It was not the best weather but with no rain we could cope with the ridiculous winds! His favourite day was the Pleasure Beach and especially the rollercoasters that he is now just tall enough to ride. We had to go on the Grand National 3 times – I sat at the back with Lydia on the third ride and I really thought she was going to fly out of her seat, whilst I panicked and held her tight she just took it in her stride and giggled!

I had a call from the Blood Donor magazine in the middle of the month, they are putting a letter I wrote to them encouraging them to use Social Media like Facebook more to drum up customers and they wanted a photo to put with it. I only started to donate after Kyle had made a lot of use of blood and platelets following his diagnosis, I just wish someone had encouraged me earlier as I feel I have wasted years of being able to help and support people who rely on the donations to survive. It does appear that they took notice of my letter as I seem to have every other alert on Facebook as Blood Donor information and they now have over 250,000 like’s!

The rollercoaster of a month came to a sudden dip with steroid week, strangely Kyle didn’t settle into a food and really didn’t eat a great deal compared to normal steroid weeks, he dabbled with previous favourites like Steak Pie, burgers, mashed potato. I think that was where the problem lay as the food seems to build him up to help him through the week. As it was, he was left very weak and pail throughout the week and just couldn’t make it in to school for the last couple of days. We had tickets to Stoke v Norwich that Saturday, which he insisted he wanted to go to so I took him fully prepared to bring him out if he was not up to it. He wasn’t too good but managed to get through the first 20 minutes, then he said he was tired and just wanted to rest his eyes for a few minutes – an hour later he woke up and asked if it was half time yet. I have no idea how he slept through the singing and celebrating that was going on all around him, he was very chirpy following his nap especially as Stoke managed to hold on for a much needed 3 points!

Steroids ended Sunday and by Monday he seemed to pick straight back up, he read his school book and we then had to read some pages in a Star Wars Annual he had from a Post Pal at Christmas and was very chirpy!

Update 30th March 2013

Steroid time again and the food of choice is Steak and Kidney pie, we have a fridge full of pies which without the influence of steroids he wouldn’t entertain eating, but is putting away 7-10 a day!!

It is the start of the Easter holidays and we are hopeful of a little better health for Kyle, it has been another tough one with coughs and sickness, resulting in a weekend stay in hospital for a course of antibiotics. It has been a while since he’s stayed in for that long and although it was tough, it was good to see all the nurses and staff who were amazed to see Kyle with hair and a lot more grown up. Hospitals can be very boring, especially at the weekend when all the good toys, craft and consoles are locked away when the play specialists are off, but yet again the Post Pals craft and books really came to the rescue!

We are planning a caravan stay at Blackpool for the second week of the holidays as long as Kyle is ok and as long as snow doesn’t mess up those plans. I’m hoping the country gets some well earned good weather but I’m not too hopeful.

Kyle and Lydia have both had some lovely Easter cards and letters, Lydia loves a princess pencil set she has received and Kyle has for the first time, without any help, built a lego set he received. He was over the moon.

Update 1st March 2013

Kyle’s had his toughest month in a long time, he’s had a bad cough, sickness and temperature on and off all month, but as usual he has battled his way through, helped with a lot of great post. He’s had amongst other post, Where’s Wally postcards, a late great Christmas package for all the family with his regular farm mail and updates from around the world.

His January steroids had a late steroid food entry of chicken and mushroom pasties, and in his last two days he polished off 15 Ginsters specials!! We are as usual in the middle of steroids as I write and as usual he has chosen his random steroid food, which resulted in an early morning trip to the shops to pick up 6 packs of Staffordshire Oatcakes. To those outside of Staffordshire who have not been lucky enough to hear of this delicacy, Oatcakes are a similar size and shape of pancakes, like a flat frisbee, but are a savoury oat taste, best eaten rolled up filled with a variety of fillings but Kyle has chosen just cheese.

Half Term holiday came in the middle of the month for Kyle and Lydia but with Kyle off colour we had a lot of home days, again still having hours of fun with the various gifts that Sandwell Academy children sent them for Christmas, they’ve never coloured in so many Moshi Monsters!! Moshi Monsters was the big event of Half Term with Kyle pushing himself to the limits to drag himself through a tough but great day at Alton Towers which brought together two of his great loves theme parks and Moshi Monsters who made an appearance at the park during half term. At times he really struggled but never gave up and found a new favourite ride in Sonic Spinball (he has just reached 1.2m, the minimum height), Kyle and Lydia loved it, but nana and dad had to be dragged back on after nana nearly collapsed the first time!!

Update 1st February 2013

Kyle and Lydia have spent the month discovering all the great gifts they received from Post Pals at Christmas and also catching up with some of the cards and letters they received too. Both of their reading has come on and it has been supported by the cards, books and letters they have received from Post Pals that they have been determined to read themselves.

Most of the month Kyle has stayed a little bit stronger than of late and it meant we were all able to really enjoy the snow, making snowmen and sledging. It is the first snow he has really enjoyed, because since he has been old enough to enjoy it, he has not been well enough. It brought back a very sad memory for me of when it snowed in December 2010 and I took Kyle and Lydia out to sledge, we hadn’t gone far and he started to moan and cry. I called him a wimp and sent him in to his mum, whilst I took Lydia out to have fun sledging. Three days later he was in hospital and we learnt of the drama that was to unfold for him over the next three years of treatment. I have never forgotten how guilty I felt and will remember the day I called my brave, strong boy a wimp forever. However it is great to see that although he can still get very ill with the treatment that in between times he shows signs of being stronger.

As always with the monthly update this week is steroid week and it is a bit of a funny one as he doesn’t seem to have a ‘steroid food’, if anything he is a little fixated on food he normally cannot stomach. He is eating a lot of sugary foods, unlike his usual savoury foods, things like Rice Krispies and Ginger Nut biscuits, very strange. He’s also been very poorly and although he has tried, he had to have a day off this week, he was just too exhausted, he couldn’t even stand up properly. He’s had dark rings around his eyes and when he hasn’t made it to school or when he’s come home, he’s slept.

Update 5th January 2013

December started with the usual bad cough following Kyle’s chemo injections and his steroid week and we’d been through an entire supermarket chains stocks of macaroni cheese during the steroid week itself. Every day of December was special this year with some amazing Advent gifts in the Advent gift bags they both received, they were amazing!! Both Kyle and Lydia had put in great efforts as a camel (Kyle) and a sheep (Lydia) in the school Nativity, as we expected the camels were the comic characters in fitting with Kyle’s personality!

Throughout December Kyle was gradually lifted by all the wonderful cards, letters and gifts from all over the world again, including for the first time, Israel.

I was contacted by a teacher from Sandwell Academy to say that her pupils had chosen to be Kyle’s elves and could she drop some gifts off to save paying a big delivery charge. My mum gladly agreed to make herself available to take in the delivery. A couple of days before Christmas I had a very excited mum on the phone saying that her flat had been filled by the delivery!!! I didn’t quite take this in until I went to pick them up and I filled my car and had to make two trips as I could not fit my mum in the car! It took Kyle and Lydia over an hour to open all the wonderful and imaginative gifts from all the pupils who had bought gifts to fit all of their interests. It then took another hour to read all the lovely creative and artistic messages and cards from the pupils to Kyle and Lydia.

This week is yet again steroid week with cheese and Jacob’s Crackers being the food of choice, he has as usual been very poorly, but as he is still off school and he still has loads of his gifts to play with and create with he has handled it far better than usual.

I hope everyone has had a great Christmas and New Year, thank you to everyone who has lifted us throughout December and into the New Year!

Update 2nd December 2012

Steroid food was a bit of a mix last month with microwave mash just topping the demands throughout the days and nights. This week is again steroid week and the mystery of what will be on the menu means we have cupboards of Highlanders Broth, Hot Dogs, etc.

Kyle also had his chemotherapy lumber puncture. Kyle seems to handle this minor procedure better every time he has it and although he missed a day of school for the procedure he bounced back for the next day and still continues to enjoy every second of school. His bloods came back as having very low immunity in the middle of the month, so he had a week off his chemo whilst they recovered, and fortunately he managed to get through without picking up any bugs and actually had one of his best weeks since before Leukemia.

Kyle and Lydia’s Nativity rehearsals are ongoing and they are both very excited to play their chosen animals, Kyle as a camel and Lydia a sheep, and we can’t wait to see the show. We also had Parent’s evening and were very reassured that although Kyle is behind due to missing most of his first years of school, he is really working hard to catch up this year and Lydia is helping him to do this.

Kyle and Lydia have already started to receive some Christmas cards and they were very, very impressed yesterday to find they had received a very special Christmas bag each which had been made up with great care and effort to include a gift for every day until Christmas Day like a big Advent Calendar!

Update 6th November 2012

We are the eve of steroids again and the mystery of the food fad of the month will be discovered in the next day or so, rest assured we are stocked up on soup, pies and hot dog sausages just in case. He’s had his monthly steroid injection and was asleep by 7pm, hopefully he will have a good night and wake up a little better tomorrow.

On the whole he has had a good month, for the first month in what seems like forever his cough has been a little easier and that has helped him cope with everything a lot better. We went to Warwick Castle for Halloween, which was scary but a lot of fun too, they especially enjoyed the Mad Professor making snap bangers with his science experiments. We went to a local bonfire and the fireworks were brilliant, Kyle stayed awake on my shoulders all through it, the last couple of years he has not been able to stay awake and we’ve ended up covering him in blankets in his buggy.

Update 2nd October 2012

Steroid week was tougher than usual this time, Kyle always has a few days of itchiness but usually a bit of Piriton and cream and he is ok again. This time, the Piriton and cream just wouldn’t work and he was itching so hard he was cutting his skin, it was an upsetting night and he ended up in hospital and had very little sleep but eventually we got it under control.

His food craving of the month was meat and potato pie, with him demolishing at least 10 a day!! Unfortunately we have cupboards full of 25 Highlanders Broth soup from last month, as this craving did not return (looks like dads got his lunch sorted for a month!).

At the end of steroid week, Kyle went to his first football match this season, Stoke vs Man City, his highlights were having 2 meat and potato pies and chips and he found it tough going so we had to leave just before the end. Once he was home and relaxed he told his mum how much he had enjoyed it and was keen to go again and Lydia would be able to enjoy a girly day again with mum.

Post Pals introduced Kyle and Lydia to Moshi Monsters and they have both started to really enjoy the Moshi Monsters on the computer where they can have fun, learn and make friends. We entered one of the competitions in one of the magazines that Post Pals sent to Kyle and Lydia and they have won a Moshi Monster Moshling Guide! They were really excited to receive the books in addition to the lovely letters, cards and gifts from Post Pals.

With the first month of Year 2 completed, apart from the day after the itchy night and a few hours for hospital appointments, Kyle has been able to attend school more than last year, this has been great for him to mix with his friends and he is slowly but surely catching up with his sister. They have both improved their reading which has been helped with trying to read the cards, letters and books received from Post Pals. The Space subject has really gripped them and every spare moment, Kyle is painting or drawing a space picture or telling anyone who will listen about planets!

Update 11th September 2012

Not much sun this summer holiday but Kyle and his sister, Lydia, have enjoyed it thoroughly with a mixture of days out with mum, dad and grandparents.

Steroid week came in the middle of the holidays which was tough for us all but without having the complications that comes with trying to keep up Kyle’s school attendance it was a little easier. Steroid food for this week was Highlanders Broth (no other variety would do), he was having 10+ tins a day and we were clearing shop shelves and really struggling to keep up with his demands (no thanks to grandparents introducing him to it on one of their days).

Last week saw the start of a new year at school, year 2, typically his lumber puncture coincided with the day before they were due back, all concerns were unfounded as he sailed through it and has thoroughly enjoyed learning about space at school, which is the theme of this terms subjects (I must admit I am quite enjoying it too!!).

Tomorrow is the start of another weeks steroids – we’re hoping for a smooth week but as there will be no respite I’m sure it will be a little more tough than in the summer. We have 25 tins of Highlanders Broth on standby but I will be surprised to see the same craving for food repeated, fingers crossed for a simple and cheap craving!

Update 19th June 2012

Kyle’s blood counts and chemo intake has been up and down in May but he has mostly stayed out of hospital and was able to enjoy a lovely family holiday in Wales at the beginning of June. We managed to avoid the floods and some tree falls of mid Wales and arrive on the Pembrokeshire Coast. As he was feeling a little better and doing his best to impress his Auntie and cousins, he managed to stay very up beat and cheerful throughout our stay. However, with his birthday coming up, he had his Lumber Puncture on Monday 18th June and was put back on the steroids. He’s a little bit under the weather but we hope his birthday party on Saturday will lift his spirits with all his friends and family around him.

Yet again he and Lydia have been receiving letters and some great postcards from all over the world! We are also having updates on all the goings on down at the farm throughout the seasons and I am getting just as much enjoyment from the exciting updates as they are! Kyle and Lydia are both getting a little better at reading the letters and cards but we are still having to read most of the longer letters and I really believe receiving all of the letters and postcards encourage them to learn. Some of the books have been really great too and have made it in to their favourite books choice, especially a great and very real story about a twin boy and girl.

I can’t wait for the next update to let everyone know their reactions to their birthday cards and presents that they have been sent by Post Pals.

Update 8th April 2012

March started off with Kyle’s continuing cough and temperature meaning he was in and out of hospital on various different antibiotics. One thing that kept all of our spirits up was a great amount of Post Pals messages, by email, postcard, letter and gifts, yet again from all over the world, which is really encouraging Kyle and Lydia to learn about different countries! Whole classes from several schools have sent Kyle some lovely messages about how they have very similar hobbies to him with drawings of their favourite characters. It was wonderful to hear both Kyle and Lydia give out full belly laughs when they received a Whoopee Cushion through the post, the fun lasted for days! Kyle’s favourite gift was an amazing canvas painting of Darth Vader that arrived all the way from Australia!

It was great for him to be the featured Pal on the website and to see himself on the front page whenever we went to the Post Pals website and the bumper messages have really helped to bring Kyle back to his best with a much better end to the month and no further hospital stays in the run up to Easter. Thank you for all the mail, it really lifts our moods and aids Kyle’s recovery when he is feeling low.

Update 29th February 2012

Other than a tough week on his steroids, with his anger, sorrow, tears, laughter and his insatiable appetite, February has been another ok month for our brave little boy. He has now been prescribed an inhaler which is keeping his (what seemed like never ending) cough at bay, yet more medicine that he has added to his regime.

Two years ago I watched the Phantom Menace with Kyle and Lydia on video for the first time; they soon became hooked just as I had at their age. Kyle asked if he could go and see it at the cinema like I had with my dad, he was very disappointed when I told him that they don’t put older films back on the cinema. Two years on when I took him to see the Phantom Menace in 3D he truly believed that they had specially put it on for him!! He didn’t move a muscle and watched every second with complete concentration; I cannot thank George Lucas enough for such a special moment.

Update 3rd February 2012

January started well with the New Year and post Christmas glow for all of us. Kyle continues to brave his needles and is getting more confident with them and knows that they are necessary. He has mostly been well through January apart from a constant cough, however the end of January has seen a bacterial infection combined with a viral infection crossed with concerns of what would be very serious for Kyle, Chicken Pox going around his class!! All have resulted in delays in his chemo and steroids and taking 3 different types of antibiotics to relieve his infections and to keep the Chicken Pox at bay. With all of Kyle’s various ailments we had forgotten Lydia could also be poorly as she seems to have the immune system of an ox, but just as Kyle was at his worst Lydia had an ear infection with compacted wax, for her another type of antibiotics and hard of hearing. As always she was more than willing to take the back seat and make do whilst Kyle required the focus of attention.

With the reduced doses of chemo, Kyle’s hair continues to grow back really soft and with little waves, his mum can’t wait to have it cut, but I on the other hand want it to just grow and grow after so long with no hair at all. So far I am winning and he also wants it to grow longer.

We’ve had loads of parties for school friends birthdays this month too and so far we have made all of them and it has been good to see them both mixing with their school friends after such a stop start year with school last year. I bought tickets to Wrestling in Manchester at the end of January but we were not able to make it as Kyle had been in hospital in the day and although he came out he was not quite up to a long night of it. I was a little optimistic to think we would make a late night so we will be sticking to local wrestling for now, no Hulk Hogan appearances but at least its great fun and less traveling and earlier nights.

Kyle and Lydia have had some lovely letters this month including some letter packs from schools and they have enjoyed hearing about other childrens hobbies, lives and religions, and I have learnt a lot too.

Update 11th January 2012

December has been an excellent month, Kyle has been more enthusiastic and not letting his treatment get him down as much. However without his central line, although he is being very brave, the constant injections and finger pricks are his biggest concern – being able to swim and have proper baths again do not quite make up for it apparently!

For the family, the one week of steroids each month remain the hardest part. Kyle becomes an emotional eating machine and Lydia finds it difficult to understand the changes in him. This was not helped when the fridge freezer broke in steroid week just after Christmas – we are set back up now and thanks to some helpful neighbours we could still have his frozen meals on demand in the interim.

The best part of the month was of course Christmas and Kyle and Lydia have enjoyed a lot of cards and letters from all over the UK, USA, even ones from the Netherlands and a lovely card for Lydia from Tokyo! They also received updates from the reindeers, Dottie the Dalmatian and presents from Santas Elves. I saved up the gifts for the big day and Christmas morning was doubled with the extra gifts. They loved every single one and are still enjoying the great presents – I really enjoyed making a plaster Ben 10 with Kyle painting him very well. Lydia loves her new Barbie and she now spends ages searching for videos of her on youtube!

The month and the year didn’t end quite as high with the broken fridge freezer and two nights in the hospital on the antibiotics following Boxing Day to control his spiked temperature – it had been a while since a hospital stay and needless to say he was anxious to have the cannula removed.

They are back at school again now and we all continue to help Kyle catch up with the missed days at school, which probably would not seem as bad if his twin sister wasn’t so far ahead of him, but she tries her best to help him too.

Thanks to all Kyle and Lydia’s Post Pal friends for making this Christmas so much more enjoyable than diagnosis Christmas last year. We hope our (and everyone else’s) 2012 is a good year.

Update 3rd November 2011

Apart from a cough that Kyle has had all month, which has worn him out, it has been a good month for him and the gifts, cards and letters, which Kyle and Lydia have received, have continued to really lift their moods.

Kyle and Lydia remain fascinated with hearing about where the letters and gifts are from and hearing everyone’s stories and seeing some really nice scenery photos.  They also received one of Dottie the Dalmatians soft toy brothers who Kyle has named Fluffy Darth Vader and we have been following Dottie’s adventure in Lanzarote and the adventures of his other brothers and sisters, which we have received regular updates about. Kyle has received a Darth Vader costume and he wears it before and after school, we struggle to get him out of it and I have been on the receiving end of Darth Vader’s ‘force’ many times this month! Thanks also for Kyle and Lydia’s new pillow cases which they absolutely adore.

School is still going very well and Lydia continues to support Kyle in catching up after missing big chunks of Reception year and her support really encourages him to do well. They had a great half term at the end of October meeting up with their old nursery pals and relatives. We took them to Drayton Manor Park at the end of the week and they watched an amazing fireworks display after riding the new Ben 10 ride in the dark, a great day but all too much for Kyle as he fell asleep half way through the fireworks!! With all the music and bangs I was amazed that he managed to fall asleep at all.

Update 2nd October 2011

September started with a delay to Kyle’s treatment due to his counts not recovering quickly enough, but he bounced back within a week and the remaining part of the intensive treatment has thankfully gone well. So Kyle is now officially onto his two years worth of maintenance which hopefully will be a little easier on his little body.

Kyle and Lydia have received some fantastic letters, cards, emails and gifts this month, which has meant Kyle has had plenty to do to keep him occupied on his boring days in the hospital. Kyle has also had great fun sticking glow in the dark space scenery on his wall and enjoys looking at them before going to bed. Lydia loves all the letters she receives and every weekend she wears the bracelets and necklaces that have been made for her. They both enjoy sitting listening to the lovely words people send and what is going on in other people’s lives, they are keen to hear where people live and were most excited when we received a card from Nashville in the USA!!

Also, this month has been back to school for Kyle and Lydia and they have settled in to Year 1 well. Kyle has only missed a couple of days with treatment which has pleased him to spend more time with friends. Both of their reading is going well and I am encouraging them to use their phonics to read bits of the cards and letters they are getting. They have never coloured in and played with craft as much since joining Post Pals and they are becoming very creative with it all.

Update 30th August 2011

The second half of August has been a real mixed bag. Kyle has finished his current course of steroids and his diet has crashed from 30 hot dog sausages and mash to match to almost nothing. He spent a few days in hospital on antibiotics to get him through a bad cold and of course the intensive chemo continues with day trips to the hospital and the district nurses coming out most days to put it through his central line.

It sounds doom and gloom but beside all of that he has kept very high spirits, thanks in the main to sharing all of this with his sister as she is usually at school whilst he has gone through it all. They have supported each other and have made the most of any day trips that don’t involve a hospital.

Kyle and Lydia are new to Post Pals but have had their spirits lifted by receiving some lovely letters and cards and they have enjoyed hearing about other peoples lives and hobbies. He particularly enjoyed colouring in some Darth Vader pictures he received!

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Alex William

27 May 2012

Story written 2005

Alex was born very big (9lb 12oz) and full term but was very ill and rushed to neonatal intensive care. He stayed there for 9 weeks and was quite a mystery to the doctors. He was diagnosed with Hypothyroidism but this did not explain his oxygen dependency. He also got pneumonia.

He gradually improved but once home his parents knew there was another problem, as he was very floppy and developmentally delayed. He couldn’t hold his head up until 6 months or sit unaided until he was 2. He still doesn’t have an official diagnosed but he is described as having a type of Dystonic Cerebral Palsy. He also has food intolerances. Ear tendencies and eczema which used to very severe.

Alex is a very happy, loving social boy but whose social abilities are his main strength. He now goes to mainstream school with one to one support. He is learning lots of new words and uses makaton (A type of sign language). He gets around by crawling and tries to stand and walk holding onto things. He is very clumsy and uncoordinated so bumps and bruises himself a lot. He wears a protective helmet when playing.

Story update January 2008

Alex still doesn’t have an official diagnosis but he is described as having a type of Dystonic Cerebral Palsy or sometimes as having an “asymmetrical four limb motor disorder” as well as global developmental delay. He also has food intolerances eczema which used to very severe. His food intolerances and eczema are less so now, but still flare up occasionally. Happily, he seems to have totally grown out of his glue ear tendencies and now passes his hearing tests even though he no longer has grommets!

Unfortunately, as Alex has got older, his frustration has resulted in quite a lot of difficult behaviour which makes him extremely hard work and need constant one-to-one attention despite his physical progress. He got a diagnosis of ADHD in 2007 and he also seems to have some autistic tendencies. At the time of writing, he still has no MAIN diagnosis but the list of “lesser diagnoses” grows all the time! He has done very well in a mainstream school up to now (with constant one-to-one assistance) but we are now looking towards special education as we think this will better address his needs as the curriculum will be based more around teaching him practical skills and self control as well as academic skills, which we feel is what he needs and will help he frustration/behaviour.

Update 20th June 2009

Alex has just celebrated his ninth birthday! We didn’t know if he was going to be better for his birthday as he’d been poorly with a really sore throat which was caused by mouth ulcers in the throat (ouch!) and also some on his tongue. It was agony for him to eat and he was not a happy bunny because he does so love to eat! Anyway, he’s on the mend now and was back to school for his birthday on Thursday and really enjoyed all the attention.

We (mum and dad) clubbed together and got him a sandpit for the garden and toys to go in it. Big brother Jordan gave him some money and sister Jess got him the first season of The Sarah Jane Adventures on dvd which he loves. It’s the only non pre school TV that he’ll watch avidly! He also got Pingu and Pepper Pig dvds which are still firm favourites, although Peppa Pig may go missing shortly, as Jordan, aged almost seventeen and with no intellectual special needs at all, LOVES Peppa Pig… actually so do I!!

Alex would like to say a very big thank you for his birthday posty which included cards from Karen and one from Jenny Orpwood, both of which were lovely Bob cards. Wendy also made him a gorgeous card and Debbie sent him a great card and lovely presents for both him and Jess which they loved! THANK YOU so much!

Apologies for the late update but I have just started work and it’s the first time I have been a working mum of 3 (well, at least working this many hours) and everything is going a bit pear shaped! Please bear with me.

We are all going to the zoo tomorrow which is Alex’s birthday treat instead of a party this year, so I’ll update you on that next time.

Update 5th May 2009

Alex has had a very good month, making lots of good physical progress and with a little less objectionable behaviour for us to contend with! He is loving being able to get outside now the weather is being a bit more reliable and I have started to get brave and take him and Molly the dog out together on my own, hanging onto both the lead and the wheelchair whilst managing, most of the time, to keep an eye on Alex’s hands to check he’s not about to release himself and walk off (wobbly fashion) the way he is prone to, even crossing roads which is very scary! Molly pulls quite a lot but I have found she will walk alongside the wheelchair quite calmly. I’d like to say this is because of her sixth sense she seems to have where Alex is concerned, but I think it’s more to do with worrying about getting her paws run over by my dodgy “driving” (of wheelchair!).

Alex adores Molly and getting her has been the best things I have done in years. I would urge anyone dithering over getting a dog for their child or children, particularly for an ill or disabled child, to consider a Labrador. Although you should never trust a dog 100%, the lab really is one of the best breeds around for children. Molly doesn’t seem to have an aggressive bone in her body and is so much part of the family that it doesn’t seem possible we’ve only had her 5 months. The kids and I (and indeed their dad when visiting) are all potty over her and make up stupid songs about her daily which Alex finds hilarious and joins in with whilst Molly just looks at us with her liquid brown eyes as if to say “you are all quite mad but I love you!”.

Alex is really making good progress in the water at his weekly swimming session and can “swim” in a fashion, with just armbands. He is also having hydrotherapy at school so is getting the benefit of the water twice a week most weeks.

Thank you so much to Benedicte (Tom S’s mum) for a fantastic Moonpig postcard showing Loveheart sweets on the front that had got all three kids’ names on. Alex on one and Jordan and Jessica on another! I am going to frame it… it’s brilliant! Jess was very impressed indeed!

Update 31st March 2009

Alex has yet another cold/cough at the moment that has come with a temperature and is making him feel a little under the weather, but he’s not too bad and has managed to get up to mischief today, even though he had a day off school. Big brother Jordan has just put up a new trampoline in the garden for him now that the weather is better, which is also fun for Jess and good for Jordan’s chest (as he has CF) even though Jordan seems to consider himself a bit too old for bouncing on trampolines these days!

Alex has lots of exciting things going on at school lately largely due to having had a long awaited CAT (Computer Aided Technology) assessment. He is now having lots of new equipment introduced to him to help him organize and record his ideas in lessons. We are also going to get some switches installed for him at home, which will mean he can switch on his own DVDs and music in his bedroom. We are hoping this will help with frustration and challenging behaviour because he will then be able to do things for himself that he has previously had to rely on others to do for him.

We have also been getting lots more input about Alex’s many sensory needs which we have long suspected but not understood very well until recently. Input from the Challenging Behaviour team and a comprehensive assessment from a great OT from this team has helped us realize how Alex can go into “sensory overload” when his brain is trying to make sense of lots of input. Even getting lots of positive one-to-one attention can sometimes result in negative behaviour from him when it all becomes too much and he goes into “overload”. Alex’s new lycra bodysuit that he now wears under his clothes, helps with his sensory issues and also with trunk stability. This suit is helping him to walk unaided some of the time (amazing achievement for Alex!) and also helping with negative behaviour as he is less frustrated than before because he is finding that he can do things he couldn’t before. He also thinks he looks rather like Sportacus in it which he approves of greatly as he is a big Lazy Town fan!

Alex now belongs to the same swimming club as Jordan and Jessica and although they can’t provide the one-to-one tuition he would need in order to receive proper coaching like the others, he does get an hour of pool time a week with just him and me and/or his dad playing in the baby pool. He is starting to get quite confident in the water and can float on his back with just arm bands for short spaces of time.

Alex still loves our black Labrador Molly (“Moo-Moo”) and the better weather is meaning he can help us take her out more often as there is not as much mud for his wheelchair to get stuck in!

Thank you for the fab brown teddies that Alex and Jessica have received this month – they both really love them. Also for the washcloth bunny kits from Jane and the brilliant finger puppets from Kim. They are fantastic.

Update 12th March 2009

Alex has been poorly with a nasty chest and throat infection, the type that hasn’t troubled him for a couple of years. This is the first lot of antibiotics he’s needed to have this past winter so that’s an indicator of how robust he’s become! He was running some scary temperatures and his respiratory rate was very high for a while but he’s much better now, and although a little tired and pale, he went back to school yesterday and was fine.

Alex has a new skill which we are very proud of and so is he! He has learned to get to his feet, from being on the floor, COMPLETELY UNAIDED! It is amazing to see him do it… he is like a very wobbly crane stretching slowly upwards, but when he gets there he has a huge smile on his face and waits for applause… which he always gets!

Alex is causing big problems with his escapologist tendencies… he can escape from anything, but in particular his wheelchair and car seat. Even a Crelling Houdini Harness is not proving suitable as some models he can escape from (!) and the most recent we have trialled won’t fit in the school bus so we can’t have it! It’s a big worry because he needs to be safe in the car so he doesn’t cause an accident by hanging on the back of the driver (usually me!).

Thank you for the wonderful, fantastic handmade “cuddle cushion” for Alex, with Thomas the Tank Engine on one side and cross stitches of cats on the other. He isn’t home from school yet but I can’t wait to give it to him when he gets home… it is wonderful and he’s going to love it. I was bowled over when it arrived… how brilliant that some great people have made him such a special gift. It was made by SOLAK, Stitch Of Love and Kindness (www.stitchesofloveandkindness) and I have emailed them a personal thank you as well. They are a terrific organisation.

Update 29th January 2009

Alex is very well, very happy and getting bigger and stronger all the time. We recently saw the geneticists (finally) to discuss the chromosome deletion (the cause of all his problems) that he was diagnosed with last June but we had already found out most of the info on our own.

It’s been an up and down few months as Alex/Jessica’s dad and I split up last September and he moved out in October. Alex doesn’t understand this and there’s no real way to explain it because he sees Daddy lots still, most days, so when he’s not here Alex just thinks he’s ‘out’. He does ask for him every morning though which is quite hard. I just tell him he’ll see him later and that’s usually enough. Mark is still sharing the care of Alex who is very hard work. He is hoping to get somewhere better to live and slightly closer by soon which will be better for the kids.

Poor Jess has suffered the most. She is ten and right in the middle of it all. She’s too young for us to give her complicated explanations, but old enough to be very upset by the split. She’s coping better now though; still gets a bit tearful – but has been cheered up a great deal by the lovely posty that has come lately.

We spent Christmas altogether as a family which went well and was nice for the children. Things are a bit easier now; we do some family stuff altogether and the kids are able to see us getting on as friends which is better for everybody.

Molly the Labrador joined our family in early December and she is the best thing to have happened to us in a long time! She is the most wonderful natured black lab in the world. She’s 4 years old and a rescue dog. She is fantastic with Alex and extra patient with him as if she KNOWS that he’s ‘extra special’ and even when he is a little rough with her she never as much as growls. He has just been to respite for 4 days and she searched everywhere for him and licked him half to death when he arrived back after school today!

Please would you excuse my lack of updates in recent months. I have tried to send as many personal thank you’s as possible, as you are all so kind and deserve to be thanked, but if you have sent the children something and not been thanked, please understand, your posty is SO much appreciated – the children love it – their mother is just too stressed and frazzled to stay on top of the ‘paperwork’ some of the time. Although I’m trying to catch up, as you can see! But really, a million thank you’s to all. You are wonderful!

Update 1st November 2008

Alex has settled really well into his new school which is a special school and we are very impressed by the family support offered. They have already got him completely sussed which became obvious at a recent parents evening when they told us about how bright they have realised he is (in his own way) and informed us of the places they have had to fish his glasses out of (the drain being but one!) and how quick he is at undoing straps, buckles and belts!

Alex is absolutely thrilled will the stickle bricks he received from Post Pals recently. We had never bought him these before but will be getting him some more as they are such a big hit and Jessica loves them too – in fact all the kids that have visited our house lately have had a go. Sometimes the old-style toys are the best!

Thank you too for a beautiful cat book that was received from overseas. I’m afraid the packaging was recycled before I wrote down the contact details (see how efficient they have become at recycling!) so I can’t give you the personal thank you that you deserve but Alex absolutely loves the pictures. I have put it away for when he is a bit older as he would (accidentally) ruin it now if it was left in his room with his other books but he can have it out when he asks, for someone else to look at with him.

Update 21st June 2008

Alex had an absolutely fab 8th birthday which, although was 3 days ago at the time of writing this, has continued through the week because tomorrow he is having a party at a local play centre and he has been counting down the ‘sleeps’ from his actual birthday to his party day.

Alex’s birthday has been particularly exciting this year as it was just a week after we have moved into our long-awaited new house. Alex now has much more space to ‘mobilise’ and has his own ground floor bedroom and adjoining shower room. His bedroom is connected to the living room via french doors and he has a whole wall of lockable storage space (wardrobes and shelving with doors) to keep his things in. It is all absolutely fantastic and worth the very long wait and all the hold ups as we should have moved in 19 months ago! I think Alex actually thinks we are on holiday and will be going back to the old house soon (heaven forbid!) The flooring to the whole downstairs in the existing house (apart from the kitchen) is very high quality laminate which was very kindly funded by the Roald Dahl Foundation and our local Lions group. We are so grateful to them because without them we would never have been able to afford this quality flooring which is the only type suitable for mobility aids/wheelchairs etc. To top it all, it looks gorgeous! We have never had such a lovely looking house!

I have been busy this week (when I really should have been trying to catch up with my studying as well as unpacking more boxes!) painting Alex’s favourite In The Night Garden characters on his bedroom walls in time for his birthday. I’ve not finished yet but so far he has Iggle Piggle, the Ninky Nonk and a partially complete Upsy Daisy on the walls. I am going to paint the Tombliboos on the doors of his cupboards, Makka Pakka next to the bathroom door, the Pontipines over the doorway and I’m not quite sure where I am going to fit the (huge!) Har Hoos but fit them I must because they are Alex’s favourites! I think I will miss out the Tittifers (birds!) because they look too hard to reproduce! If you are not familiar with In The Night Garden, you are going to think I’m talking a foreign language… but if you have a pre-schooler, or ARE a pre-schooler or an ‘Alex- type’ then you will know exactly what I am going on about! Alex doesn’t know or care that he is older than the average Night Garden fan and to be honest, I don’t blame him… I wouldn’t really mind having Iggle Piggle and friends dancing round my bedroom walls and I’m thirty-six! But I’m sure that’s just me!

Alex (and all of us, his family) would like to thank all these lovely Post Pal friends for sending “posty” which really helped to make Alex’s day special.

Helen F and family, Kate Dee (who also, as always, has sent some really wonderful posty to Alex’s sister Jessica who really looks forward to receiving it… thanks so much Kate) Julie Barrett, Hwee Hoon (lovely Thomas picture!) Claire McCartney (Alex enjoyed counting the candles) Karen Sami, Isobel, Victoria and Jenny Orpwood and her friend Trevor (Alex laughed at the cartoon cat, he’s still crazy about everything to do with cats!).

Alex also brought home cards from school from several members of staff and the WHOLE of his class who had made cards for him! Some of the cards said “Happy birthday… we will miss you…” in them, which I later found out was not because unknown to me, Alex has done something soooo bad he’s been expelled (haha! I did wonder, he is rather BAD sometimes!) but that his class had been told that he will be leaving at the end of term. This is because after 4 years in mainstream school, Alex is going to be starting special school in September. His mainstream school have been fantastic but since he’s been in the Juniors, it has become obvious that his needs would be better met in a special school environment. He has been attending his new school on a Monday (taking with him his lovely one-to-one helper, Donna, who we are all going to miss very much!) for the last couple of terms and he likes it very much.

Update 9th March 2008

A HUGE thank you to Doug, Kristie, Riley and Declan from Virginia, who sent our whole family a wonderful parcel. It contained a brilliant gadget for Jordan (an electronic spinny thing that gives a message in lights as you spin it – he spins it across the kitchen floor while he’s doing his nebuilser each evening!) a fantastic cuddly pink unicorn for Jessica which she has taken to sleeping with every night and a car and a BRILLIANT toy drum machine for Alex (he LOVES it! He can actually play it and it is improving his hand/eye coordination while he does!) They also sent a big pile of postcards of interesting places in Virginia for all of us.

It was an absolutely brilliant parcel and a complete surprise. It contained some really great, well thought out presents for the children. Thank you all again so much! It was so kind of you.

Update 3rd January 2008

Alex has really enjoyed Christmas and his new wheelchair has meant we were able to get out for a few walks (his old one was so dilapidated that we could barely use it!) He has been very hard work for us and frankly, we are looking forward to him going off to school on Friday (!) but winter holiday times are always hard. Again, it will be easier when we finally move to the new house as he will have more of his own space in the house to mobilize safely around in. It’s looking like March now for the move (a whole YEAR later then we were first told!) but as long as we get there in the end! Will keep you posted.

Alex is currently being tested for a few new genetic tests with the slim possibility of a “main diagnosis”. Next stage is for us (his parents) to go for blood tests. 

Alex is well in himself; he has shaken off the winter colds so far.

We are also looking at a move into Special School for Alex as soon as we can arrange it (which may take a little while as we have to get his statement changed first). His mainstream school have been wonderful but we think it’s time for him to move somewhere where all his needs can be more easily addressed and he can spend part of his day learning life skills rather than concentrating on a curriculum that is not really in keeping with his own “life agenda”!  

Thank you so much to Julie Barret and family for the wonderful In The Night Garden little library of books… Alex ADORES them! He likes the other lovely things you send too but the books are VERY close to his heart and they are surviving remarkably well… he seems to be being CAREFUL with them which is unheard of – Alex isn’t careful with anything!! Also, to Angela Dixon and family for the fantastic Wiggles drum that plays all his favourite tunes! His face was a delight the first time he heard it… he started frantically doing all the actions; he knew them all! I was so surprised! Jessica said to me “MUM! Didn’t you KNOW he knew all those??!” No I didn’t… Bad Mother alert… I tend to run for the hills when the Wiggles are on…! ;o) Thank you also for the reindeer cards, they where fantastic! As well as some beautiful hand made cards and big thank you’s to all the pals’ family members who send cards to other pals! You put this mother to shame… I didn’t even get cards out to all the people I know personally this year!!

Update 3rd October 2007

Alex has put us through the mill this summer! Although he is often still his lovely, cute, cheeky, huggable and kissable self, unfortunately, without warning he can put his hand out and strike you… HARD! Poor Jessica suffers a lot in this way and often gets her hair pulled. It’s a real shame as they are so close in age (and size) and she adores him… but she gets very frustrated when he hurts her, as do we.

Alex turned 7 in June. We had a party here at home for close family and friends on what was sadly a very rainy day, but everyone came! He was in his element. If there is one thing Alex loves, its attention… and it was all on him! He wasn’t a stroppy/spiteful boy that day. We think the triggers for the violence are often raised voices… and/or not having someone’s complete undivided attention. But we can’t give him that degree of attention constantly. We are a family of five after all, and equally, he strikes without a trigger on occasion. His poor dad has marks all down his face at the moment… and I, more often than not, have bruises all round the tops of my arms where he pinches.

We think this behaviour might date back to 2 years ago when he had the two massive seizures. It could be related to those… or to the meds he has been on ever since. We have discussed it with his paediatrician who was able to witness some of this behaviour in her clinic. She prescribed Melatonin to help his sleep better at night but other than that, could only advise we got more respite care from social services, which, to my mind, is not really facing the problem head on. We had refused Melatonin in the past but, mainly down to desperation, I did some research and found it to be a natural body substance that we all produce when it gets dark which tells our bodies to sleep. Apparently, blind children (which is understandable) and some children with profound learning difficulties (less easy to understand) don’t produce enough natural melatonin to have a good sleep pattern, so, for these children, the artificial form can be given to good effect.

I’d say he’s better… not fab… but we’re all (including Alex) getting a little more sleep. We have all become quite sleep deprived and his older brother Jordan (see his update) now sleeps on Jessica’s bedroom floor because being in with Alex is just a nightmare for him. We are hoping this is short term, but sadly, our new house (for some inexplicable reason) is no closer to being ready. I have no idea why and we, as merely the prospective tenants, are powerless in this situation. The contract for the building work for Alex’s extension began on the 17th of September. It is now 3rd October and they haven’t started. We drive past several times a day so we know. It is always silent and untouched. I have spoken to the Housing Association many times but they are fed up with me ringing so I’ve stopped. They just tell me it’s a twelve week contract and they can’t MAKE the contractors start work.

As it is, we are SUPPOSED to be able to move in from the 17th Dec. Yes… right on Christmas. I can’t see it happening even if it were done by then. We are not allowed in to decorate as it is officially a “building site”… or it should be. So really, we’ll probably have to wait until we’ve decorated in the New Year (if the HA will let us do this) because it’s impossible to decorate around Alex! This delay is very depressing and the kids are upset about it as well. Remember, we were originally told we would be able to move in LAST SPRING!

Alex is currently having new genetic investigations done in search of a proper diagnosis. I’m not sure if I have mentioned anywhere further down, but “dystonic cerebral palsy” which he is commonly considered to have, is not an actual diagnosis. More likely, he has some rare syndrome. He was seen for the first time in 5 years by a geneticist who had some ideas of things to test him for. He also wanted to do a complete new chromosome study on him so we’re going down that route now. His dad and I no longer hold out for a diagnosis – after all what is it but just another label? But sometimes a diagnosis leads to treatments. I think that is unlikely to be honest and I’d be more worried about a diagnosis leading to a bad prognosis. For instance, if Alex was given a limited life span, I’d prefer not to know. I have enough issues about Jordan and his cystic fibrosis. We don’t focus on the life span thing there… we just focus on Jordan – who is very well – and keeping him that way.

Alex is doing well at school and has progressed from P-scales onto the first level on the National Curriculum in most areas, which is fantastic. Unfortunately, his behaviour at school, whilst not as bad as at home, is not what is should be and they have to spend a regrettable amount of time dealing with that rather than teaching him. It has got to the stage where I dread looking in his home/school contact book when he arrives home!

I hope to have more positive news re Alex next time! He certainly challenging us… in fact he’s put us both on anti depressants – something I would never have believed could happen! But hey… a least we’ve got him. I watched a video of his early weeks the other day and was reminded of what a miracle it is that he is here at all. It’s important never to lose sight of that.

Thank you so much to Kate who sends all the children such lovely cards. Jessica especially gets very excited when she gets things from “Dee Kate”!!! (For some reason she always reads her name backwards before correcting herself!)

Update 9th May 2007

Alex is having a really up and down year health wise; nothing really serious touchwood, but seems to be catching every bug going. Following his nasty-viral-fluey episode which lasted a couple of weeks and REALLY knocked him off his (already wobbly!) feet, he got the nastiest case of chicken pox I have EVER personally seen, which knocked him off his feet for another two weeks (he is still covered in the scars which I hope will fade!) and he has continued to catch colds and coughs. It’s only in the last 3 weeks or so that Alex has got back to full strength with practising his walking.

He is also being a REAL little monkey (understatement of the century!) with his behaviour.  We are having input from a behavioural therapist and she has helped us understand how Alex uses objectionable behaviour to add an element of control to his life and also how he “feeds off” our responses. So we have to learn to react as little as possible when he is doing some of the (sometimes quite dreadful) things he does! Meanwhile, however, he remains his lovely, sunny-natured self and is possibly one of the most sociable children in the world and despite all the challenges he presents us with, we wouldn’t be without him for the world. His hugs and kisses are worth more than anything!

Alex enjoys spending time with his respite carer Dot (who he adores) and later this month he is going to stay over at her house for the first time. Not only will this give us the opportunity to experience something we have completely forgotten what it’s like to experience – sleeping ALL through the night (!) – it will give Alex the experience of a “sleep over” – something that children of Alex’s age (nearly 7) might start taking for granted (even if only at a grandparent’s house or similar) but which is difficult or impossible to arrange for many children with special needs because other people aren’t able to handle their needs/behaviour. So although we feel a bit guilty about “sending him off” for the night, it will give us all (both of us, plus Jessica 8 and Jordan nearly 15) the chance to chill out a bit and we really need to do that!

We have had lots of delays and disappointments regarding our new house. It’s still going to happen… but ideally, we would have moved in by now. Unfortunately, in reality, Alex’s extension has not even been started! This is due to hold ups with getting all the specifications agreed with the occupational therapist and the housing association. I don’t think they realised the extent of Alex’s needs until he was fully assessed, in fact I know they didn’t. When I look back through our “house file” at all the letters I wrote (ranging from begging to threatening to contact the press) they really SHOULD have had a clue about how our housing situation has affected Alex and subsequently all of us, but for some reason, they managed to ignore us for a long time and at the detriment of Alex’s development and our sanity! Although we are still very happy and grateful to have this long awaited move in the pipeline, I can’t describe how stressful it is having to sit by while nothing happens and the building work STILL doesn’t begin, week by week. Poor Jordan is very stressed; he has nowhere to study, all his stuff gets trashed by Alex (who CLIMBS, however high Jordan tries to put things) and he is kept awake half the night by Alex’s night time antics. Jordan has CF so really needs his sleep more than most other teenagers. We have a houseful of flat packs, rugs, blinds and general new stuff for the house, NOWHERE to store it and no moving date in sight! :o( To make matters worse, someone put graffiti all over the front of our new home’s front door, windows and brickwork last week. We had hoped to store some of the new things in the house and had got permission from the Housing Assoc. to do so but obviously the house has stood empty so long now that it is a vandal target, so we daren’t store anything there lest the house get broken into. This is in spite of the house being in a nice, quiet area.

Back to Alex… he has just experienced a fab Bank Holiday weekend (we try to keep him busy as possible; he is easier to handle when fully occupied!) as he went to his Kids Club (fortnightly fun club for children with special needs) then to Dot’s house. We went to the woods for an evening picnic and found a rope swing which Alex swung on with Jordan but got just as much pleasure from watching US swing – he sat, laughing his head off! (WE hadn’t had as much fun in years either… it was like therapy… and FREE!

Hopefully, next time I update I might have some more news about the house!

Update 8th February 2007

Alex has had a busy start to the year but the most exciting thing happening at the moment is that we have found out that at last we are to be re-housed into a property suitable to be extended for Alex to have the ground floor facilities he needs. This means that Alex is to have his own downstairs bedroom and shower-room! He knows all about this and has had a look at the house that will be ours, although the building work hasn’t started yet. He will also be able to walk around inside the house using his kaye walker (something there isn’t space to do in the house we have now, so he crawls around indoors here).

Alex has been a bit poorly the last few days with a bad cold/cough and a temperature. He had yesterday off school but was well enough to go again today. Today was exciting because firstly, it was snowing (so Alex threw a snowball at the taxi driver when he arrived to take him to school!) and secondly because it was “What They Want To Be When They Grow Up” day at school. The only thing we could really think Alex might like to be is Bob the Builder (!) and since he grew out of his Bob outfit some time ago, we decided to dress him as a judge for comedy value. ;o) He wore a black cloak, with a Badge saying “Mr Justice Alex ….” on it and a wig made of toilet roll tubes and cotton wool! Apparently he had a great day!

When he got home, I was doing a fitness DVD with Jessica (whose school was closed because of the snow) and Alex joined in which was very funny indeed! He kept over-balancing and laughing at himself!

Thank you to Kate Dee for the beautiful cards we have received just lately.  You’re really very clever!

Update 1st December 2006

Alex is in fine spirits and really understanding better this year about Christmas approaching. He has been chosen to be Rudolph (out of a whole class full of reindeer!) for his Christmas Production at school, and even has lines to say (which is a tad worrying I have to confess but I’m sure they know what they’re doing..!)

He has been really enjoying horse riding and has just had his last RDA session this year.

On the medical side, Alex recently got ADHD added to his ‘list’ of different labels and diagnoses and his pediatrician recommended we try him on Ritalin as she said it might help with his attention span and general hyperactivity issues. So we picked a Sunday to start it, when we could watch him closely all day for any adverse reaction. We didn’t have to wait long… he went completely and utterly LOOPO!! He is a child of few words and can usually only take the odd step on his own… on the Ritalin he TALKED NON STOP for five hours straight… only stopping for a couple of seconds at a time (no exaggeration!) and was chucking himself wildly around and walking in a fashion we have never seen before!! It was a little funny I have to admit but as the day wore on we got quite scared as it didn’t seem to be wearing off. And although it might sound as if all the extra walking/talking is a good thing in a child with Alex’s needs, it wasn’t because he was completely MANIC and off his head! Ritalin is closely related to amphetamines but with a child with true ADHD, it doesn’t act like an ‘upper’; it actually has the opposite effect for some reason. However, not so in Alex… whatever his brain deficiency, he obviously doesn’t require Ritalin to ‘correct’ it… he was actually ‘high’ until the next morning! We did manage to get him to sleep at about 8pm but he awoke at 10.30pm and went crazy again, talking non-stop and repeating it all about 12 times… as if he’d had another dose… but he hadn’t!

The next day I rang the pediatrician who said she had only seen this adverse reaction one other time in the five years she has been prescribing Ritalin and it is very VERY uncommon (so other parents considering it as an option should not assume a similar reaction might happen.)  Needless to say we are steering clear of this route… we will cope with him at his “normal” level of hyperactivity even though he regularly trashes the house, his bedroom and every clinic he comes into contact with!!

(Despite all this he IS a lovely affectionate little boy!)

Update 1st October 2006

Alex is enjoying being a ‘top infant’ (Y2) back at school and is being very good this term which is quite a relief for us all. His new one-to-one helper is great and keeps taking him out onto the playground with his walker, where some building work is going on, so he can get to see the diggers and look for Bob (The Builder) who he is convinced is there somewhere! Alex is back at horse riding (RDA – riding for the disabled) again for the new school year and spends a lot of time trying to hug the pony he is riding rather than sitting up straight and concentrating.

His health is good (touchwood) and he is continuing to make good progress with his physical development and speech. The large sentences he sometimes comes out with now keep amazing us. The other day, we sat him down with his reading book and he said ‘This book is boring… I want Clifford!’ (Big Red Dog!) So his dad wrote that in his reading record!

Update 29th June 2006

Alex seems to be catching every little bug going this year and has needed to have lots of odd days off school due to unexplained fevers. He has suffered quite a bit with hay fever as well, but is basically in good health overall. His appetite is very good and there has been (touchwood) no reoccurrence of the epilepsy.

We have been having some behavioural issues at home and at school recently, so at the beginning of June we took him for a BIBIC assessment (British Institute for the Brain Injured Child) http://www.bibic.org.uk/ and they did a very comprehensive assessment of him. This has resulted in some confirmation that most of his ‘bad’ behaviour is caused by frustration as his cognitive abilities have surpassed his physical ability to express them. They have taught us strategies to help him make himself better understood and helped us to deal with the behaviour better when it does occur. Things are improving already and he is starting to do some productive work at school again.

He is still his loving, mischievous and gorgeous self underneath though. For his 6th birthday on the 18th June we took him to see Thomas the Tank Engine at a local light railway and he spent the whole day smiling and laughing… he loved it!  We had booked a party for him at a soft play centre but it got cancelled at the last minute when they went out of business so we had to plan something else quickly!

Thanks so much for the birthday card he received via Post Pals and for all the many good wishes on his home page.

Update 1st June 2006

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

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

Update 4th April 2006

Alex is very well and enjoying his Easter holidays. We went to London last Sunday and he really enjoyed the London Eye and the Natural History Museum. Alex was so impressed with the view whilst on the Eye and WE were really impressed with the great service to disabled people. The Eye staff let out whole group (8 of us) fast track to the front of the queues both when queuing for tickets and the Eye itself. It was also a lot cheaper for disabled people and their carers.

On Monday he went to his favourite play centre (where we hope to have his party this year) and we hope to do a few other fun things with the rest of the holidays.

Alex is so happy that the weather is improving at last because this means he has a lot more freedom at home. The house we live in at the moment is not really suitable for his needs and he is very restricted (plus unable to use his walker because of lack of space). When it’s warm enough to get about in the garden, he is much happier as he is able to ‘drive’ around in his battery car and go on the trampoline.

Thanks as always for everything. The children have had a really great ‘posty’ month and still get so excited when it arrives! Big thank you’s to Kate (Postpals), Julie Barret, and Lisa Clift for the lovely posty you sent Alex (and Jessica) in March.

Update 28th February 2006

Alex has been really poorly with flu for past 2 – 3 weeks. His brother (pal, Jordan) and sister (Jessica) had it too but to a much lesser degree. Alex had a very hard-to-control temperature which we had to keep an eye on as he is epileptic. He eventually developed bronchitis and a secondary chest infection on top of that. We have had 4 visits to the GP and 2 visits to the hospital, one of which we expected to result in an admission but luckily didn’t as Alex decided to perk up while being examined, and ate some lunch and smiled a lot! Alex has been completely unlike himself which has been horrible; usually he is full of life and happiness (despite his disabilities and health problems as HE doesn’t know he is disabled and doesn’t care! ;o) and causes lots of chaos and mayhem around the house. But lately he has just been laying on the sofa or sitting (propped up) watching TV as he has not had the energy to do anything else (the house has stayed tidy!!) He is usually a bad sleeper but all he has wanted to do is sleep since he has been ill. He was ill for the whole of half term (all the fun things we had planned had to be cancelled) and then had a whole week off school. He tried to go back to school yesterday, as he is much better than he was, but we got a call to go pick him up as he was tired and upset. So he is home again today and tomorrow we will try to send him back again. I think he is just a bit confused about why he can’t do all the normal things he usually does (climbing, fast crawling, walking with help.) He hasn’t taken any steps since he has been ill. He is finally getting his happy mood back but he is not back to normal yet.

Update 28th January 2006

Alex is fine again after a period of nasty colds and coughs before, during and after Christmas and a recent tummy bug. He has not has any more fits (touchwood!) which we are very grateful for. We have been having a few issue with behaviour with him which we think he being caused by frustration due to his understanding being so much better these days, but his body not letting him do all the things he wants –  especially at home where the size of our house prevents him from using his walker. He is very VERY clever in that he is able to use a K walker to get along on if he has the space/right flooring. We are currently waiting for an urgent house move as he is being held back developmentally due to the space problem.

Despite the behaviour issues Alex has been VERY good at school this week. He has also been doing very well with his school work, naming shapes and ‘writing a story’ (by telling his one-to-one what he wants the story to be about and her writing it down for him). He is still very into books and loves being read to and also looking at books alone. In December he received a Thomas The Tank Engine book (as posty) and this is his favourite book of the moment – he falls asleep still clutching it and we can see him on the TV monitor downstairs… very cute! As he was so good this week we bought him a Thomas The Tank Engine duvet set so he gets quite excited about going to bed at the moment (brother Jordan got a Chelsea one which he is equally excited about and sister Jess got a furry pink clock for her room as she is still into all things pink!)

I’d just like to say a BIG thank you to Parisa in Iran who sent Alex some absolutely lovely posty consisting of cards, a letter (with stickers!) and a Winnie the Boy badge which he is wearing as I type!

Update 22nd December 2005

I would like to post a special thank you to Lisa as she is just one of the lovely people who have sent parcels to the children in recent days and weeks… but I was totally amazed (in fact speechless!) when yesterday a parcel came for ME!! On a parenting website I use (one of those which I have used to advertise Post Pals lately) there was a recent conversation thead about what we parents would like to see being delivered by the postman for us even if just in our dreams! There was a discussion about makeup and someone mentioned Clinique… and I agreed saying that would be great as I usually use much cheaper brands so Clinique would be a rare treat. Yesterday a small decorative box arrived, via Post Pals, addressed to ME, and containing Clinique makeup!!!! She had put a little note in with the makeup which said “Because sometimes Mums need surprises too…”  It really brought tears to my eyes and I wanted to tell everyone. I don’t know this lady at all… she was ‘just a user name’ on a forum. I fully intend to ‘pay it forward’ as soon as I can, take a leaf out of her book, and surprise someone else who will appreciate such a gesture the way I did.

Whilst writing i would like to thank everyone who has sent cards and other posty to us this Christmas. A very special thank you to all the children at Ureshino Junior High School in Japan who have sent Alex and Jordan some really lovely hand made cards with some really beautiful drawings in them! Jordan was extra impressed and he likes to draw too… he thinks you are really talented! Wishing you a very Merry Christmas and much love.

Update 11th November 2005

Alex had an MRI scan yesterday (10th Nov) for two reasons… he was due to have one when he was 5 anyway to see if it will shed any light on why he has the developmental problems that he has (cp is not a ‘proper diagnosis’ for him… just a description) and also to see if any reasons can be found for the recent seizures. We had to go to St. Thomas’s in London (new children’s hospital called Evelina) and he had to have a general anaesthetic which is always a bit scary because he had an allergic reaction to the first GA he ever had. We should get the scan results in a few weeks.

Well he was fine… a complete star and no dramatic reactions! He was demanding food as soon as he started get past the whingey post-anaesthetic stage and ate two slices and then a dinner of sausage at mash!! It was a long day and we are very tired today. Alex is having a quiet day off school (well… as quiet as Alex gets!!) We’re glad to have got it over with as he was supposed to have it done last month but he had a cough so was unfit for the anaesthetic.

Would also like to say a GREAT BIG THANKYOU to Becky you sent Alex a lovely Bob The Builder book which we received today – he was thrilled to bits! Thank you so much! He is studying it as I type!

Alex’s new, most recent love is Thomas The Tank Engine and he watched a Thomas video yesterday after his anaesthetic which cheered him up a lot.

Update 25th October 2005

We would just like to publicly thank Lauren and her family in the US and also Karen for all the lovely treats they send to all three of the children. You are all wonderful and the kids are so grateful!

Update 25th September 2005

Alex is doing well – no more fits touchwood… and is loving being back at school.  Too our surprise his one-to-one assistant seems to have discovered a hidden talent!! She had written last week in his home/school book that he had been awarded a sticker for excellent work (I have to be told this as no sticker is ever in evidence seeing as he eats them!) The class has been doing work on ‘patterns’ and he had understood it better than the rest of the class and been stating aloud when they were getting it wrong!!! My husband and I were totally shocked because Alex’s one huge strength is his social ability (which is why we chose to put him in mainstream at least for now)… but he has never, to our knowledge, been better than any of his(mainstream) peers at anything! (Expect perhaps making people laugh, smile, feel happy etc!) We just didn’t think his understanding/attention span were ‘that good’ despite the fact that he does join in everything and make obvious progress.

So I queried it today when I met her for the first time (Alex usually goes in to school on funded transport but on Monday’s he goes horse-riding so I take him myself) and she said yes he was definitely doing it… and it wasn’t a fluke because they had tried it again the next day! All the children had been asked to get themselves into boy-girl-boy-girl formation and then 2 boys-2 girls etc and Alex has been very vocal and demonstrative at telling them all how they should be positioned!!! And furthermore… on Fri pm he SANG Jack & Jill to the class alone…!!!!   One-to-one had come back from lunch to hear him singing it to another child.. so when the teacher came back she asked Alex if he would like to sing it to the class… and he said yes… and DID!!!!

We have never heard Alex sing anything!! He will finish off sentences you start.. I know he knows/remembers songs and rhymes… but to sing along all the way to ‘Jill came tumbling after…’! Well! I thought I knew my son better than anyone… but we didn’t know he could do this!

Alex has an MRI scan at Guys Hospital in London on 13th October which will involve and overnight stay. This is to check to see if they can see any reason for the fits although all tests so far (including CT scan) have been clear. They will also be looking to see if any reason can be found for his general condition now he is older. (An MRI at 18 months showed nothing out of the ordinary.

We would just like to say that ALL cards, gifts and letters are SO appreciated and that I spend a lot of time worrying about people we haven’t thanked but our daily routine just doesn’t allow it, so I reply as often as I can. The children all really love the things they are sent. Alex in particular loves it when he receives stickers or books of any kind and enjoys the handmade items which I have to tell him all about in great detail!

THANK YOU so much to everyone and just because you may not get a personal reply, please (I am so disorganised and ‘bogged down’ with all the children’s different therapies/routines/medications/appointments/hobbies etc) please don’t think that your thoughtfulness is ignored.  We all get so much pleasure from Posty. Thank you all.

Update 7th August 2005

Alex had another fit this morning.. .. so looks like this is epilepsy and the other big one was not a one off.  We are home already, so it was a lot less dramatic and scary this time, but was so hoping that it wasn’t going to happen again, especially since he is on the anticonvulstants since last time. I feel so bad for my little man, having to deal with one more thing (and us to be honest! How do parents with children who have epilepsy EVER relax?!) but as always I know there are many more kids/parents worse off… we saw some today at the hospital.

Anyway, he seems ok and is asleep in bed. I can see him on the monitor screen as I type, but I am still going to sleep beside him tonight… and no doubt tomorrow!

Update 30th July 2005

We went to Disneyland Paris two days later for 2 nights which was a treat paid for by the Starlight Childrens Foundation (they grant wishes!) and Jordan, Jess and Alex absolutely adored it there.. as did we  Alex’s face was a picture when he saw and met the characters!

Update 22nd June 2005

We just can’t believe what all the kind people have sent Alex via PostPals! There are thank you notes on the way to everyone I have addresses for.. but I would be really really grateful if you could put something on Alex’s page to say thank you to everyone who we can’t thank personally.. we never expected all those parcels! And the fantastic thing was that he would not have had many this year as a lot of us (family/friends) clubbed together to buy him the little car for him to drive.. but he ended up with more presents and cards than ever before! You should have seen his face when we brought him into the living room in the morning to see it all laid out on the floor! He didn’t even notice the huge car hidden under a blanket for about 20 minutes because he was so busy with this posty!!

Thank you all so much. Words fail me.. (and that doesn’t happen often!!)

*photos coming to the site soon*

Update 7th June 2005

He went back to school today (after last week’s health scare!) and coped brilliantly despite being a little more tired than usual because of his new medication. He had great fun in a music lesson apparently, banging away on a tambourine!

Update 5th June 2005

Alex has had a better day today… he is enjoying being home and we are adjusting to his new and complicated meds routine.

Update 3rd June 2005

We have had a terrible week… Alex has been very ill. He had a fit on Monday morning… I found him fitting, alone in his room first thing. This has never happened before… he had never had any kind of fit despite all his other problems! The paramedics could not stop it and he fitted for about 2 hours!! He has been in hospital until this afternoon.. thank God we have him home! He is on epilepsy drugs now but we don’t actually know if he is epileptic or not. He has had loads of tests (CT scan on brain, EEG and multiple blood tests) – his little body is so bruised from all the needles he looks like a pin cushion! But thank God the Alex we know and love came through it ok.

Just wanted to let you know and to say thank you so much in continued appreciation of the wonderful ‘service’ you provide.

Alex is brother to Pal Jordan T.

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Alex

27 May 2012

Story written 2008

Alex was diagnosed with a Glioblastoma Multiforme (GBM) grade 4 brain tumour in August 2002. He had emergency surgery and was kept asleep for 8 days. In December 2002 he had radiotherapy. He started chemotherapy in February 2003 after finding out the tumour had regrown. He was on Temozomide and Cisplatin first, then Temozomide with Thalidomide. He is still on treatment and takes Thalidomide which is controlling his condition.

Alex has regularly scans (MRI) and at the moment these show no active tumour.

With all his treatment and the tumour, he has been left with a number of problems. He suffers from Epilepsy, short term memory problems, slight loss of hearing, partially sighted (has tunnel vision) and is slow processing information. He uses a wheelchair for anything more than a short distance. He also has a hole in his skull (quite large).

Alex is 16 years old and keeps smiling through all his treatment. He has been so brave. Alex’s tumour could recur at any time as it is so aggressive, but Alex tries to live his life happily. He doesn’t know how ill he has been.

Update 29th June 2009

Alex has enjoyed a couple of holidays courtesy of cancer charities and they have been great.

He is still suffering from seizures. He has also been having lots of tests recently and is waiting for a brace to be fitted on his teeth.

We had meetings at school and it’s all been sorted, it was just a case of them getting to know Alex and Alex getting to know them. He is alot happier now. He went on a school trip with them and enjoyed it. He is looking forward to going on another one next month. Hopefully he will be able to stay there for another two years.

Thanks for all the cards, letters and emails sent to Alex.

Update 14th May 2009

Alex has been ok, except for his seizures and stress over how they treat him at school. We keep having meetings with them but we’re not sure anything will change and we might have to start looking for somewhere new.

He had another MRI Scan last week and we received the results yesterday. There has been no change from the previous scan, so the hospital think the problem they saw before is scarring and so they are not as worried.

Thanks for the mail and presents. The wordsearch mug was great, as was the ‘egg’head’.

Update 19th February 2009

Alex did really well in his GCSE’s. He went to college for 2 days and then they rang me up to say he wasn’t allowed to go anymore due to health and safety. I spent weeks sorting a new school and funding for Alex. He was eventually able to start in November after his operation to repair his skull. He is studying English, Maths and Performing Arts.

In November we also found out that Alex may have a reoccurrence of his tumour as the MRI showed enhancement. A repeat scan in December showed exactly the same as November and also a cyst that was missed on the July scan. We have been trying to get treatment since December but all the hospital wants to do is scan again in February. A second opinion has been sought from Germany but we have no results yet.

Alex’s first niece was born in January. He already has 3 nephews and an angel nephew. He was really excited.

Thank you for all the presents, cards, and emails. He loved the penguin as it’s his favourite animal.

Update 17th August 2008

Alex is well overall. We thought we had his seizures under control but recently he’s been having them every day. I think he’s missing going to school. He has taken his GCSE’s and is waiting for his results. We’re not sure how well he did because he had seizures in them. He was allowed extra time and he was in another room on his own with his TA’s.

Alex has been on a couple of holidays which he enjoyed. He went to Malcolm Sargents in Prestwick and he was also invited to visit the headquarters of The London Community Gospel Choir and sang with them.

Alex should have had an operation to have a plate put in his head during this summer holidays, but the surgeon’s secretary messed up and didn’t book him in, so the op will now be in October, but that has had a knock on effect on his schooling. We had to fight to get his funding, appealing twice, but then he was unable to take the place because we don’t know if his seizures will be better or worse and also he will not be able to keep up his studies [AS levels in History and English] if he has to spend time in hospital. He is now going to another College to do performing skills and creative skills. There is a special unit there.

Thanks to all the people who have sent post to Alex.

Update 14th April 2008

Firstly, Alex would like to say a very big thank you to everyone who has sent him post, letters, gifts and emails. He sends his apologies to those he hasn’t replied to. He has loved opening the post and his nephew Nathan has been helping him as well. He is only 6 and has been there for Alex since he has been ill; he has been like a brother to him.

We have had quite a busy month. Alex has had an interview to go to another school (sixth form) as his current school doesn’t have one. He has been shown around the special unit where he will get lots of support (he has problems with short term memory). We have to wait and see if he gets funding to go there.

Alex is still waiting to start growth hormones. This has been going on since November 07, the nurse always seems to be on holiday. He is still taking Thalidomide and he is doing well, except for his seizures, which are ongoing.

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Alex

27 May 2012

Story written 2006

When Alex was a baby he was in hospital for almost 12 weeks. He went in at 9 days old because every bottle he had he projectile vomited into, to the point where he was bringing up bile and his stomach lining. He suffered from severe de-hydration; he was on a drip and lost a lot of weight. When Alex was discharged they said he had Gastro-Reflux. Every bottle was pre-thickened with Gaviscon and he had to have Ranitidine every day. Alex attended regular visits to hospital at around nine months old and a feeding group once a week, which he still attends now.

Alex’s development appeared normal at eight months old but by the time Alex was one I started to notice he would forget a lot and his development seemed to go backwards. Everyone told me he would just grow out of it. At Alex’s two year check he only scored twelve months at nearly everything. Alex got referred to the portage service, also saw a speech therapist and it didn’t take long for them to realise that Alex has very poor understanding and very poor speech.

I took Alex to see a doctor at Stepping Hill Hospital. It was a different doctor as; Alex’s usual doctor was on maternity leave. The doctor examined him and noticed he had a lot of birth marks. She asked me if he was born with them and I told her “no, they just appear” so she said she wanted me to take him to St Mary’s Hospital in Manchester where a geneticist saw him and diagnosed him with neurofibromatosis (or NF1 for short).

We are not sure how NF1 is going to affect Alex but so far we know it has affected his overall development. Alex has to go for an MRI scan because they think he has fluid on his brain. Alex also has to have a series of X-rays to make sure his bones and his spine is okay. Alex has four little lumps on his head known as Neurofibromas. In most cases you don’t tend to get these until puberty, so right now we are waiting for test results and hoping and praying all is okay.

Update 1st December 2006

Alex has now got a new sister – he is very happy and loves her lots! He has started full days at school and he loves that. He would be on the bikes all day if he could too. Alex got a bit upset with halloween he did not know what to make of it. He has a new doctor now who wants him to have even more tests and Alex can say a few more words now. His younger brother Taylor has got to have some tests on him as he may have the same problems as Alex. He is looking forward to Christmas. We went to see Santa the other day, Alex has started to understand what presents are so we should have our first real Christmas and i can’t wait.

Update 15th October 2006

Alex started school last week and he loves it. He also has a new doctor and they have said he has 5 light spots on his brain. Alex has to have an mri scan to see how fast they are growing; all his lumps are growing very fast so they all need to be looked at. He now has them in his back and they think there may be some in the bowel too. I don’t totally understand what they think he has, i know they think he has nf1 and possibly something else, but what that something else is they don’t know.

Update 26th June 2006

Thank you to everyone who sent Alex a birthday card.

Update 9th May 2006

Alex was in hospital on 7th of May with a very high temp that would not go down. On the Monday his doctor came to see us and she told us Alex had a brain tumour, they are not sure what type it is so they have asked a different doctor to look at it, if they still can’t say what type it is then they want to do another MRI scan for to see if they can make it clearer to see.

They also said they thought he had a rear condition; I can’t remember the name of it as it just was a lot to take in a one time. I see his doctor on the 23rd May for the rest of the results from this other doctor and will up date more then.

Update 28th April 2006

Thanks for all the Easter cards and lollypop, Alex loved them.

Alex had his eyes checked at St Mary’s and all is ok. He also had his MRI scan on the 20th April and had lots of blood tests. We should find out how things went at the end of May.

Alex has had a bad month being in and out of hospital. He also had a 2 year check, to see if he has developed in the past year. The bad news is Alex is the same as he was a year ago, his speech or understanding has not improved. Alex also has to have an EEG just to make sure all is ok.

We are taking him to see Thomas the Tank Engine this weekend; he should love that.

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Kian B

20 May 2012

Story written 2009

We noticed that Kian had developmental delay from the age of eight months. He was unable to sit, balance, his communication was extremely limited, and he was asleep for much of the time. He then contracted a number of serious infections including pneumonia and spent a lot of time in and out of hospital. During one of his stays in hospital, routine bloods found that Kian was neutropenic and lymphopenic, meaning that he had no way of fighting any infections or crises. This then led to a number of tests including weekly blood tests over a two year period.

In January 2009, Kian was diagnosed with an extremely rare form of severe combined immune deficiency called P.N.P. This is a degenerative condition for which the only cure is chemotherapy followed by a bone marrow transplant.

As a consequence of Kian’s condition, he is extremely susceptible to infections and viruses. A simple common cold could prove fatal for him. Kian also has a number of neurological problems which cause him to be globally developmentally delayed. These problems especially effect his physical development and he finds this extremely frustrating.

Until Kian has his bone marrow transplant he needs to be kept at home. He is not allowed to go swimming, attend nursery or pre-school groups, go on public transport, or be in any environment where there are lots of people. In the mean time, Kian is kept at home in isolation to protect him.

Kian is scheduled for a bone marrow transplant in summer 2009. He will be admitted on July 13th and will spend approximately 3 months in hospital. Until then Kian takes a number of different medications on a daily basis to keep him well. These include prophylactic antibiotics, anti fungal treatments, inhalers, iron and weekly infusions of immunoglobulin.

Update 10th April 2010

We are very sad to say that Kian passed away in his mum’s arms and with his family around him yesterday.

Update 9th April 2010

Kian has become very unwell and we have brought him to Acorns Childrens Hospice where he can be kept comfortable.

Update 27th March 2010

I wanted to let you know that unfortunately the doctors have told me that there is nothing more they can do for Kian as he is just too poorly. We will be bringing him home on Tuesday to spend whatever time we have left with him there.

He still loves receiving post as it really brightens up his day and he would love to continue to get some at home. His new address will be 10 Highland Road, Charlton Kings, Cheltenham GL53 9LT. I will post regular updates from now on.

Update 1st December 2009

Well it’s been another tough month here for Kian. The antibodies that the doctors thought may help to treat Kian’s GVHD did not have any effect, this was such a shock as they are usually very effective and we were told that we had only 1 option left, a type of stem cell. The only problem was that they are not available in the UK so they had to get them from Holland; Kian had these cells a couple of weeks ago so we now just have to wait and hope that they work.

Kian has continued to loose skills and now has no use in his legs and is very weak, all MRI scans have shown no changes so the doctors are baffled as to why he is getting worse.

On Friday 20th November Kian did not seem well and was started on antibiotics, his blood pressure was high and he was very sleepy. The next day Kian was much worse he had often required over night oxygen and his blood pressure was now 190 despite lots of medication to bring it down. At 11.30am Kian had a massive fit and unfortunately this was too much for his body and he stopped breathing properly. Fortunately the intensive care team were already with Kian and put him on a ventilator. Kian recovered well from this episode and it now on medication to reduce the risk of him fitting again. Kian had another MRI scan following this and unfortunately this showed extensive progression, this was devastating news and doctors have told us that Kian is unlikely to get better. Kian has been started on 1 last medication to try and fight this infection and we will know in about 2 weeks what effect it has had, so fingers crossed the next update will be good news.

Thank you so much to everyone that has sent Kian post recently, he still loves receiving it. A special thank you to the children at Yarnfield Primary School, Kian loves the pictures and they are on his wall. Hopefully when he is feeling better he will be able to send you some back.

Update 26th October 2009

After some tests we found that Kian was unfortunately suffering from a chest infection and engraftment syndrome. He became poorly very quickly and was requiring oxygen to help him breath. He was put on a high dose of steroids and a number of antibiotics and after a few days he started to feel a little better.

The engraftment syndrome that Kian was suffering from quickly turned into GVHD which caused a horrible itchy rash and continued breathing problems. As a result, Kian needed to stay on the high dose of steroids.

The steroids controlled the GVHD well but unfortunately they have also caused him to have many more infections and virus’ including CMV, EBV, and BK virus which caused his bladder to bleed, and then lead to Kian having large blood clots which were impossible for him to pass and were extremely painful. He had a catheter put in to help them break down the clots and make it less painful.

Kian also picked up a serious line infection which made him very poorly as well as a fungal infection in his lung.

More recently Kian has started to have tremors and has lost some of his skills so he had an MRI scan of his brain which showed 2 lesions. The doctors think that these lesions are also fungal infection. It is now a waiting game to see if he will have long term problems as a result of these.

The doctors have tried to reduce the amount of steroids on many occasions but each time they do his GVHD flairs up so they have to be increased again. Unfortunately the GVHD is now also affecting his gut very badly, so he is not allowed to eat or drink anything and he is now on TPN to ensure he receives all the nutrients he needs.

The doctors have now decided that the best chance of Kian’s GVHD getting better is to treat him with antibodies and he stared these last week. It will be approximately 1 month before we know how effective they have been for him.

I’m so sorry it has been so long since the last update but as you can probably tell Kian has been having a tough time of it.

It is so lovely for Kian to receive post from all of his Pals. He gets very excited when the post arrives. We have all of his cards displayed around his room and the gifts he has received have really kept him going. It has been so long that it is impossible for me to thank everyone individually, but it really does mean a lot to us to know that we are in your thoughts. Thank you all so much.

Update 6th August 2009

Kian has had a good couple of weeks with very few side effects from his chemo, the only one has been feeling very sick which in turn led to a refusal to eat, so he is now being feed through a tube. Hopefully this won’t take too long to get better as he usually loves his food.

He has had some special splints made for his legs as the muscles are very tight and they should hopefully help him walk in time.

Kian has now started to get a little more poorly and has had a temperature which is refusing to go down. He also some breathing problems and has been started on some strong antibiotics. He will be having some tests to establish what the problem may be.

Thank you for all of Kian’s post, he has been very lucky and loves it all. A big thank you to Emma for his favourite things picture, he enjoys looking at all of the things on there. Also to Tez for the little dog and duck and for the photo of your dog. Once again to Wendy who always remembers Kian, he received your Bob card this morning and he hasn’t let it go since!!

Update 25th July 2009

Kian was admitted to Great Ormond Street Fox Ward on the 20/7/09. He has a lovely little room which we have already made home with lots of his toys. Kian has had his hickman line and NG tube fitted which is brilliant as he does not have to have any more needles when they are taking blood. He also has all of his oral medicines down his NG tube too which is fantastic as he has so many to take and most do not taste very nice. Kian has started chemo now and despite lots of pre meds Kian had a reaction to the first drug. This is not uncommon and gave him a high temperature and a rash. He is due to have his transplant on 30/7/09 and i will update after he has had it.

Update 18th July 2009

This month has been very busy for us. Kian has been well which has been lovely as we have been able to see everyone before his treatment begins. We spent 2 days in Great Ormond Street for pre transplant tests and this was tough for Kian as some of them were not very nice. We took him to the bear factory to get him a special bear to take to hospital with him though and ended up with 3! During this visit to Great Ormond Street we were told that Kian’s transplant was to be delayed by a week due to the donor not being able to make the original date. Although this was frustrating, it has given us an extra week to prepare, which has been blessing in disguise.

Thank you so much to everyone who has sent post to Kian this month. He has loved opening his cards and gifts and gets very excited when the post arrives! A special thank you to Wendy who sent Kian his first ever Post Pals card.

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