Story written 2010

In July 2009 Adam was diagnosed with High-Risk Neuroblastoma (Stage Four), a rare and aggressive cancer that affects about 100 children in the UK each year. In addition to the primary tumour in his abdomen, the disease had spread to his bone marrow, his lymphatic system, and other distant areas of his body. Like the vast majority of children, Adam had an advanced form of the disease before it was discovered.

Since his diagnosis Adam has been cared for by one of the country’s leading paediatric cancer care units. He has so far had surgery to remove a gland in his neck, had an intravenous line fitted directly into his heart for drug administration, undergone 8 months of intensive chemotherapy, endured dozens of invasive testing procedures and needed numerous blood and platelet transfusions. He also has to take a daily cocktail of other drugs to counter the side-effects of the chemotherapy and to try and keep his body functioning normally.

So far Adam’s cancer has not responded well enough to treatment. His bone marrow remains infected and scans still show disease spread throughout his body. Without being clear of detectable disease Adam cannot move forward to the other stages of treatment – surgery, high-dose chemo, stem-cell transplant, radiotherapy, oral chemotherapy and immunotherapy.

He is to undergo two more 7-day cycles of a harsh chemotherapy regimen called TVD to try and get him to the next stage. Another series of bone marrow tests, CT and mIBG scans will follow at the start of May and his next course of treatment will be determined by the outcome of those scans.

Update 5th November 2013

We are doing well, considering everything. Jessica has started secondary school and has been selected to play netball for her school. She is settling in very, very well. She gets lots of homework but still manages some hobbies – one of which is making pop videos.

Jake has has now started his GCSE years. He’s still playing football, still playing cricket (indoor in the winter) and has started a Saturday job as a football referee.

Adam is missed every day and we have his birthday this Saturday. We’re planning a trip to London to see The Lord Mayors fireworks, followed by a meal at Wagamamas. This was a firm favourite of Adam’s.

Update 11th July 2013

Just after 9 this morning lying in our bed at home as we held his hand, stroked his hair, and told him we loved him, our beautiful son Adam took his last breath and left this world. He will live on forever in our hearts.

Update May 2013

Adam’s parents have updated their blog with an update we have posted below. Please send Adam, Jessica and Jacob some happy post without mentioning Adam’s condition. We have a guide to writing happy post here.

The blog;

Update 30th March 2013

Since the last update, Adam has flown out to Michigan to begin a new course of treatment here. After a brilliant day flying out here, Adam woke the following morning with probably the highest temperature I’ve known him to have. He was admitted to hospital for antibiotics. The infection proved to be a nasty one but after the first 24 hours gave Adam very little trouble. Because of this, we still managed to have all the investigations done and there were no delays in starting treatment.

Whilst Adam was an in patient, he received the biggest, and loudest, balloon he’s ever had. It was a Superman one and if you tapped it, it played a short, noisy burst of the theme music. He also had, and continues to have, hundreds of emails sent to the 9th floor of the hospital. Even though he is no longer sleeping on the 9th floor, the nurses are forwarding them on to him. There are lots of jokes and messages. A big thank you to everyone who sent them.

Adam is still struggling a bit here as disease and now treatment are causing pain. Hopefully, as the treatment works, this will diminish. We are now looking forward to seeing Jake and Jessica. They have finished school for Easter and are flying out to see us all in a few days.

Update 12th March 2013 from Post Pals team

Adam flew out to America for more tests and to decide on future treatment options, however he has been admitted to hospital with a stubborn infection. The hospital have an E-card system, you just type in a message, they print it out and take it up to the child. We are asking volunteers to flood him with cheerful messages, why not send your favourite joke and a note to say “Hello”? Just click here, enter the name Adam Bird and instead of room number please put ‘9th floor’. Thank you for making Adam smile.

Update 4th March 2013

Firstly, many apologies for the lack of updates on Adam. We’ve had a hard few weeks with him, either here at home or in the US. My last update said that we were due out to America that week. Well we made it.

On arrival, Adam was looking and feeling very well. Unfortunately, that didn’t last long as some of the aches and pains returned. He had a good birthday but his pains got worse in the days that followed. These, and the placement of a new port, meant Adam had an uncomfortable couple of weeks. Our doctor there started Adam on a new treatment plan. We stayed for a month to see how he coped with this and, after scans that showed the disease was stable, we returned home just in time for Christmas.

Adam, however, never takes the easy route. He returned home with an abscess on his bottom which burst on Christmas Day! After a visit to St George’s for surgery to drain the rest of the abscess, Adam then spent the next four weeks with daily visits from our wonderful community nurses to administer some TLC to his bottom.

A month after we came home, we returned to Grand Rapids for scans. The results were mixed – a common occurrence with Adam. So with a little tweaking to his treatment plan we returned home after just a week in the States. This time Adam returned with a urine infection. We managed to avoid hospital in patient stays and yet again we had daily visits from our nurses.

We are due to go back again to the US this week. Adam is due to be rescanned. His aches and pains have become more persistent which is worrying but we will get some answers next week.

Once again, Jake and Jessica are at home with the grandparents who do a wonderful job whilst we are away. The children cope remarkably well. Obviously this is helped by keeping to their daily routines of school and sports and they are remembered by many of Post Pals.

Which leads me to say once again thank you to all who help bring a smile to each of my children’s faces. And thanks to Kevin who also wrote to Nick and myself, as well as to each of the children.

Update 4th November 2012

A big thank you to everyone who has written to Adam over the last few weeks. They have been tough on him and the post has really cheered him up. A special thanks must go to Alice Pyne who highlighted Adam’s current spell in hospital on her Facebook page. Congratulations to Alice too on her Teenager of Courage award – a well deserved honour and recognition for a very special young lady.

So to Adam. Having been in our local hospital and then the Marsden for over 2 weeks, Adam was admitted to have his Port removed as this was quite possibly the source of infection giving Adam temperatures. Since then, he has been home and eating well – and playing well! And more importantly, no temperatures!

He’s had a lovely couple of days at home with Jake and Jessica but tomorrow Adam, Nick and myself, will be flying back to Michigan to review Adam’s treatment – something that a couple of weeks ago I never thought we’d be in a position to do. We’ve packed a few Post Pals cards with us, along with gifts from family and friends as this Friday is Adam’s 9th birthday. He knows we’re going to be away from home but we will make try to make it the best we possibly can.

We are, however, very likely to miss Jessica’s 11th birthday. Good luck to Nanny and Grandad who will be supervising Jessica and her friends for a birthday dinner, followed by a sleepover (yikes). This birthday was organised before I realised that Adam’s quick visit to the States for scans was extended to incorporate the inevitable changes in treatment. For the second year in a row, Nick and I will be missing Jessica’s birthday.

P.S. Thank you Yoda – Luke Skywalker (Adam) has been noisily battling Darth Vader (Jake) on several occasions.

Update 26th October 2012

Adam returned from the US towards the end of September, having completed the first cycle of treatment under the care of the Helen DeVos Children’s Hospital in Grand Rapids, Michigan. He coped pretty well with the treatment but did have to be admitted for high temperatures just as we were due to fly home. Having rearranged our flight, we finally returned home after 7 weeks.

Adam was only home a couple of days before we had to visit our local hospital, once again because of high temperatures. These are probably a side effect of one of the drugs he’s on. After 4 days we were discharged. He has been very tired but was happy to be home. This was unfortunately short lived as once again his temperature started to soar – and at this point he wasn’t on the drugs that could cause it.

So far Adam has been in hospital for 12 days. He’s had the occasional home visit in between but his temperature is still rising at various points in the day. He is currently on a different combination of antibiotics and is getting better in himself. Hopefully, this latest combination will do the trick. He has an infection somewhere but so far neither Epsom Hospital nor the Marsden can find a source. It’s all very frustrating and upsetting when Adam is obviously unwell.

It has been lovely for him to receive his post pals mail. He had a bundle on his return from America and Jessica has bought into hospital the more recent post – she particularly enjoyed bringing in the rather large box containing a Spongebob Squarepants balloon that was almost as big as Adam. Thank you, Post Pals.

Update 10th September 2012

A lot had been going on in Adam’s life recently. He’s back on treatment as his disease has progressed. He initially had treatment at the Marsden. He finished his last course there just in time for the school holidays to start. I went away for a few days with the children. We had a good few days at our caravan, interspersed with a few trips to the local hospital for blood counts! We had a lovely time but on August 6th, I flew to Chicago with Adam so that he could potentially start a new treatment plan at the Helen DeVos Children’s Hospital in Grand Rapids.

After two weeks of tests, Adam was started on 2 chemotherapy drugs. Because these drugs are not usually prescribed together we have had to stay in Grand Rapids for the duration of the first cycle (28 days) under the supervision of the hospital. The intention is to take the drugs back to the UK for future cycles with the help of the Marsden and to fly back for scans/amendments to treatment plans. This has yet to be confirmed! (Not panicking yet as still not finished cycle 1.)

In the meantime, Adam and I are trying our best to enjoy our time here. When we’re not at the hospital, we have been to the zoo and museums, explored the shopping malls, swam, played crazy golf and gone go karting. We have also been to the beach on Lake Michigan. The sand there is lovely and the water has been slightly warmer than the sea off West Sussex where we’d normally go paddling!

As our time here has been extended indefinitely from our original two weeks, we had a visit from Dad, Jake and Jessica. It was lovely to see them and very sad when they flew off home again. I hope it’s not too long before we can see them and to catch up with Post Pals…

Update 19th June 2012

A lot has happened since I last updated in April. Unfortunately, at the end of April, Adam had a MIBG scan which showed that his disease, having been stable for almost 2 years, had progressed. The lymph node that had worried us on his MRI earlier in the year was now definitely neuroblastoma. Obviously, this was all very, very upsetting but we decided we needed a plan of action for treatment.

In early May, Adam and I flew to Hershey in Pennsylvania so that Adam could have blood taken and be assessed for a trial at the Childrens’ Hospital there. The trial consists of forming a vaccine using parts of Adam’s blood and takes a few weeks to make. It was a flying visit. We flew Monday night, spent Tuesday in hospital and flew home Wednesday night. We were made to feel very welcome both at the hospital and at the Ronald McDonald House there. We managed to go to a car museum on Wednesday morning before going to the airport. And because, it was midweek, we had a very own tour guide whilst there. Adam took a photo of just about every car there.

Once home, Adam had a Port fitted (he’d had 2 very happy, carefree months without a central line) and then started a course of chemo here at the Marsden. Whatever our future plans are, we had to start some treatment in the hope of stabilising the disease. Adam had now had 2 courses and we are due for scans next week. Once we have those results, we can plan what treatment we feel is right for Adam. It is almost certainly going to be in the US.

In the meatime, we are going about our daily lives as normally as possible.  Which means Jake playing as much sport as he can (football merges into cricket over the summer) and Jessica participating in lots of school activities. We all went to a family wedding which was lovely. And we have had a few family days out too – on the few rain free days we’ve had.

Update 10th April 2012

Thank you to everyone for the letters, cards and gifts that are sent to Adam, Jake and Jessica – and even me, last month! I had a treat from Post Pals for Mothers Day. Jake offered to make me breakfast in bed but, as Nick was off somewhere doing a 20 mile run, I had to get up and make Adam his porridge.  It was the thought that counted!

The following weekend, we went to Center Parcs to celebrate Adam’s grandad’s 70th birthday. We have been several times over the years but this is the first time since we’d been since Adam became ill. The weather was lovely so we cycled everywhere and the timing couldn’t have been better. Adam had his Hickman Line removed 2 weeks before due to it being infected. At some point, he will have a replacement but for now he is wiggly-free, and boy, did he make the most of it that weekend. We spent hours in the pool. It was great for us all but especially for my Dad who fully appreciated having all of his grandchildren with him for the weekend to celebrate his birthday.

Since then, Adam has had a few more days off school before the Easter holidays started. We’ve pottered around at home on the whole although we did have one trip up into London to visit Madame Tussauds. It was very busy and I thought it wasn’t the best idea I’d ever had until we go got to the last exhibition. It was all about superheroes! Adam had a great time and loved the 4D film that finished it all off.

Update 13th March 2012

It’s been a very busy few months for Adam. He completed his treatment in Germany at the beginning of January. The whole family travelled out in mid-December for the final cycle of immunotherapy. Adam had a week as an outpatient, a weekend off, and then went into the hospital as an inpatient for a couple of nights before being treated as an outpatient again. And during the weekend off? Well, that just happened to be December 24th and 25th! So the five of us celebrated Christmas in a rented house in Germany and it was lovely. I cooked a chicken and we had Christmas pudding and crackers. Our landlords had put a few decorations up before we arrived and we took the children shopping to choose a few more. Santa was very clever at finding the house to deliver the presents. I think Adam was a little concerned that he’d deliver them to home, but he needn’t have worried. Our campervan was rather full on the journey home.

We all came home for a couple of weeks, before Adam, myself and his dad took our last trip to Germany for final scans. Although his mibg once back home at the Marsden showed that his disease was as stable as ever, the German MRI indicated a new tumour. We had a very worrying 10 days before the mibg and results from our consultant here. A follow up MRI at the Marsden shows that there is no change to the ‘mass’ from the first MRI. What it is, we still don’t know and it will be monitored. What we do know is that its not fast growing, aggressive, mibg-avid neuroblastoma.

So back home, Adam had attempted to have a routine that includes going to school. It’ll be a while before he’s full time but we had got his hours to 10.30 to 3.30 and he was thoroughly enjoying being with his classmates. At some point, we will have to address his lack of education for the last 2 and half years but for now the idea is to concentrate in integrating back into school life.

He’s had a bit a hiccup in the last couple of weeks. He got an infection in his Hickman line. In fact, he had about 5 infections! So off to the local hospital he went for IV antibiotics. And as the only thing planned to be going into his infected line for the next couple of months is antibiotics, the decision was made to remove the line. Adam now has no Hickman line. He is thrilled. At some point we may have to consider having something else placed but for now, he is wiggly-free! He plans to go swimming in the very near future. And to get back to school…

Thank you to everyone for our post and Valentines cards.

Update 30th November 2011

It’s been a while since I’ve updated – we’ve been doing lots of travelling to Germany and back and we don’t always have easy Internet access.

After an awful time with cycle one of immunotherapy in Germany (Adam was knocked out by the morphine and ended up in our local with pneumonia), he has positively sailed through the last 2, mainly due to switching from morphine to a different drug with few of the side affects. We spend 2 and a half weeks in Germany and then 2 and a half at home – and whilst at home, Adam has managed to go to school for a few hours each day.

Adam is now at junior school and when there he thoroughly enjoys himself. He sees old friends and has generally settled into the class and school with new teachers. He is now “a proper schoolboy” and came home sporting a black eye – a result of clashing heads whilst playing cops and robbers on the playground. How normal is that?

However, “normal” grinds to a halt every fifth Saturday, when we wave goodbye to our other 2 children and drive across Europe to hospital. Adam is taking it all in his stride. He has the occasional wobble as we leave but we’ve made the whole time as comfortable as possible. Because we drive, we take a fair few home comforts, and when we arrive, Adam’s new friend Ryan – another English boy being forced to make the journey to Germany – is there waiting for him. We spend far longer at the hospital each day than we need to because the boys are having such a good time together.

When we get home there is always a bag of Post Pals post waiting for us. Adam and Jessica love diving through the post. A big thank you to everyone who sends things to the children. Also, a big thank you to Dominic as he writes almost every week – and even sent Adam a postcard from his holiday this month. He was at Disney and I would have thought he’d have too many exciting things to do.

Today (Sunday 6th November) Adam had a birthday party – he will be 8 on Wednesday. He had a handful of friends to play football in the garden and I don’t think we could have planned anything better for him. His Dad and big brother did a spot of training with the boys and then they had a short match. Once again, it was all so normal.

We will miss Jessica’s birthday though. She is 10 one week after Adam is 8 and we will be in Germany by then. Her grandparents are going to be looking after her and she is already planning what treats they are going to do for her.

Adam recently had a MIBG scan to see how his disease is going. The result is that everything looks to be stable which is good news. He has another couple of scans during the next cycle in Germany and its fingers crossed that the results will back up the MIBG.

Update 5th July 2011

Thank you to everyone who sends mail to Adam, Jess and Jake. The arrival of the post continues to bring smiles to all. Adam is doing very well at the moment. Apart from very dry skin and having to avoid the sun (and yes we have had lots of sunny days this summer!) because of his current oral chemo, he’s enjoying life.

Adam, Jess and dad Nick had a great time at the Post Pals party a couple of weeks ago. The bouncy castle and slide was a huge hit as far as they were concerned. A big thanks to all the people involved in organising such a lovely day.

Since May half term, he has been going to school almost every day – although not for the whole day. He very quickly settled into a routine with his old friends. He even has his old reception teacher as his current teacher. He’s been on school trips including an entire day at Chessington. He’s practising for his year 2 leavers’ assembly and as I type this, is attending his induction day at his new junior school. It’s about as ‘normal’ a life as we can make it at the moment.

However, we are now waiting to be given dates for Adam to start immunotherapy in Germany. He has been accepted on the trial there but, as yet, we don’t know when we are going. When we do go, we’re expecting to spend 2 weeks at the hospital there out of every 5. So we will be home in between. For now though, we’re enjoying our home life as much as we can.

Update 11th May 2011

Adam is doing very well at the moment. It’s been 3 months since high dose chemo and stem cell transplant. He has recovered all the weight that he lost and seems to be recovering some of his energy levels too. His blood counts are still on the low side but are stable. Easter holidays were quite a turning point. I’m not quite sure if it was the sun coming out or having Jake and Jess off school to play with, but he was full of energy. He did lots of cycling and walking, playing in the garden and we had a few trips to the beach. We even spent an afternoon at West Wittering with Adam wrapped in cling film to protect his Hickman line whilst he paddled. He got a little wet when a wave came over the side of the dingy he was in, but he was a very happy little boy.

Scans show that the high dose chemo has had no effect on the visible disease in Adam. As this is chemo designed to rid the body of any hidden cancer cells to prevent relapse, the fact that Adam’s disease burden was stable came as no surprise. We are now in the process of deciding what future treatment Adam is to have. He will have scans next week to see if the disease that’s left is still active. The outcome of this will determine which course of action we take. What we do know is that any further treatment is going to be abroad. There are no options here. It’s a scary thought and we are trying to get as much family time as we can.

Update 1st March 2011

Adam is home again following his stem cell transplant. I don’t think he broke the record for starting pre-transplant conditioning and coming home but he would have been close. Three weeks and 4 days!

As with everything that gets thrown at him, Adam coped with it all with very little complaint. He had 2 weeks where he was unwell but once his blood counts (well, the “white” ones) started to recover, so did he. His red blood cells are going to take longer because of this chemo and the MIBG therapy he had at the start of January – visits to Epsom General for blood and platelet transfusions will be frequent.

He is tired and feels the cold more than he did before but he still has a smile on his face most of the time. His first task on coming home from the Marsden was to play the Xbox with Jake. I think they both missed their play sessions. There will be scans and lots of discussions about what the next course of action is for Adam but for now he’s home!

Thank you to everyone who sent post to The Royal Marsden. Adam thought it was great when a letter or two (or three…) arrived at his bed.

Update 31st January 2011

As of yesterday, Adam is at the Royal Marsden in Sutton for high dose chemotherapy and stem cell transplant. It’s going to be scary time for all of us but particularly Adam. He’s had a lovely couple of weeks at home – he was pronounced no longer radioactive just a week after leaving UCH having had MIBG therapy. So all three children got to run around home – laughing and arguing – as normal. Adam is about as healthy as he’ll ever be undertaking this next stage of his treatment. All we can do now is cross our fingers that he’s strong enough to cope with whatever it throws at him.

Update 3rd January 2011

We all spent Christmas at home! We were never really sure what the plan for Adam was going to be and at one point he was due to have his next dose of mibg therapy on 15th December which would have made him radioactive over Christmas. As a family, I think we would have had to have had a late Christmas Day if that had happened. However, the doctors had a rethink and he is now due at UCLH on January 5th. So we’ve had a medical free festive season.

Christmas at home was lovely – grandparents and other relatives came to visit and all the children had a great time. We even managed to go away to the other grandparents at New Year – the first time we’ve been visiting anyone since Adam was diagnosed in July 2009. Adam was over the moon to be going somewhere different, “where can we go next?” he said. I think he just appreciated the normality of it.

Once again Post Pals have been very generous – to all of us and not just Adam. I even had a box of chocolates or two. A big thank you. It’s been a very long year and it has been brightened by the kind people who are Adam’s post pals.

Update 26th November 2010

It’s been a busy month for us – November usually is – as both Adam and Jessica have their birthday. Adam started off the birthday season a few days before his birthday with a Spiderman party held in his school hall. It was great for him to see his friends as he still isn’t able to go to school very often. His actual birthday was a very special day for us all. This was thanks to a wonderful charity called Dreams Come True. Adam got to meet his hero, American wrestler John Cena and to watch the WWE Raw event at the O2. Adam had no idea what was going that evening and it was great to watch his face when John Cena walked into the room. The man himself was very accommodating and had his picture taken with Adam, then with Adam, Jake and Jessica, and then with Adam, Jake, Jess, Nick and myself. We then went to watch the show. I don’t think we could have asked for better seats as Adam shouted himself hoarse over the next couple of hours. We all had a great time. His birthday couldn’t have been any better. Jessica had a lovely birthday too albeit slightly less exciting! I took her and several friends to the cinema and for a meal. I guess we can’t meet wrestling stars every time there’s a birthday…

Adam is about to have a short course of chemo in readiness for a third stem cell harvest. Once the harvest is done – cross fingers please that it is more successful than previous attempts – he will go for another course of internal mibg radiotherapy. We have yet to find out how this will affect Christmas but we will make the most of it wherever we are.

A big thank you to everyone who sent birthday greetings and gifts to both Adam and Jessica.

Update 2nd November 2010

Adam is again feeling quite well. He spent the earlier part of October radioactive due to internal radiotherapy. He was isolated in a room for 6 days with only a little contact with his mom and dad and then once he could leave the hospital, wasn’t allowed to go home as he couldn’t have close contact with other children. So I (mom) took him to our caravan near Bognor Regis. It turned out to be a lovely week. The sun shone every day. We cycled, fed the ducks and did a little bit of tennis and golf! Once Adam was tested and his radioactivity levels had dropped, we came home. Only to go back to the caravan but this time with all five of us.

Since then, he’s had a couple of visits to school and enjoyed half term with Jake and Jessica. Now we’re waiting for blood counts to go up and we’ll be back for hospital visits. Another stem cell harvest is planned, followed by another dose of internal radiotherapy. But for now, we’re all home together.

Update 31st August 2010

Adam has had a lovely few weeks – we’ve spent every weekend of the school holidays at our caravan as a family. Jake’s broken arm has meant that we’ve not been tied down to his sporting activities as we normally would. Every cloud…!! Jake’s cast came off today and he’ll be off sports for another 6-8 weeks.

There have been a few hospital visits for Adam, but generally he has been well. We’ve had walks to the beach, played golf and played lots and lots and lots of card games.

Summer is now over for us though. Adam is now at St Georges, Tooting, ready for surgery to remove the tumour in his abdomen. It is a daunting experience for us all but it also a milestone in Adam’s treatment.

Update 9th August 2010

Adam is currently in the Royal Marsden for a second stem cell harvest – the first failed to get sufficient cells for future treatment. Adam finally achieved a clear bone marrow result so he can now finally move forward with treatment. He has remained well for the last few weeks and has even managed a short holiday with the family on the south coast. It was lovely to just be away from hospitals and treatment – although he didn’t entirely escape. As we were packing the car to go home, Adam got stung by a wasp. He did have a slight reaction to it so we checked him out at a local hospital. Luckily the reaction didn’t spread any further than the hand stung, so we continued our journey home a couple of hours later than planned.

Adam’s older brother, Jake, broke his arm a few weeks ago whilst re-enacting the TV show Gladiators. He was on a podium above an inflatable with a pugil stick. His opponent knocked him off – as he was supposed to – but Jake managed to fall off the inflatable too. So he’s had his fair share of hospital visits.

Once again, Dominic and his mum have made Adam and his parents smile. Adam regularly gets letters – and gifts – from Dominic which are full of tales of life in their household. A big thank you for the letters – one day they should be put together to make a wonderful book!

Big brother Jake has received a few more cards than normal due to the news that he broke his arm just before school ended. He would like to say thank you for the cards and especially for the very kind lady who sent him a skull and crossbones sling!

Update 12th July 2010

This afternoon Adam’s brother Jake broke his arm (quite badly) in an accident and he is in surgery having it fixed up. Obviously the family have got a lot to deal with already with Adam’s Cancer and this must have quite an effect on the other children in itself. Given Jake’s own predicament I think it would cheer him up to receive some mail himself. Thanks very much.

Update 29th June 2010

Adam and Jessica had a lovely time at the Post Pals party. It was great to meet those responsible for helping to put a smile on their faces.

We’d like to say a big “Thank you” to Dominic. He is a fellow 6 year old and his letters are very, very funny. Adam and his mum look forward to them. Adam even got an invite to Dominic’s birthday party but it was a little too far to travel. Also, thank you to Jasper and his parents, Matt and Lucy, for sending Adam a lovely collection of foreign coins. We had lots of fun figuring out which country they came from.

Update 10th May 2010

After undergoing the last two rounds of TVD chemotherapy, Adam’s latest set of examinations showed that the cancer remains active in both his bone marrow and throughout his body. He had no response to the previous two months of treatment and so his condition has been re-classified as ‘stable’ rather than ‘responding’. Adam has just begun a new course of chemotherapy and will be retested again in July following two cycles of this new drug combination.

We have been amazed at the kindness of people sending messages, cards, letters, and gifts to Adam. We feel guilty that we are unable to respond to all the wonderful people who have taken the time to brighten Adam’s day, however, it’s simply not possible to do so, and we hope people understand and don’t mistake this for lack of gratitude. It is now a definite highlight of Adam’s day to receive Post Pals mail. He has started asking what time the postman comes and today as we were driving back from hospital he said he was excited to be going home because he wanted to see if there was anything from Post Pals for him to open when he got home.

Story written 2010

Adam was born at 31 weeks, 9 weeks premature. His bowel was gangrenous and volvus and he lost a third of it.

Adam has had 52 operations and procedures to date. Adam is TPN dependant and now is on the transplant waiting list at Kings College Hospital London.

In 2008, Adam was also diagnosed with Bilateral Cystic Kidney Disease.

Adam’s mum, Lesley, has written below how 2010 has been for Adam so far, in order to help everyone understand a little more about what life is like for him.

At the start of 2010 Adam was in hospital. He had a line infection that started at the end of November and had been on IV antibiotics since. He ended up staying until the middle of the month and he got very down this time as the infection took a lot out of him.

By February the line infection had finally gone. He had a kidney function test before going into GOSH for some of the other transplant assessment test. GOSH confirmed Adam does have polycystic kidneys disease. Then Adam went to Kings for the rest of the transplant assessment test and to meet the team. This was not easy for Adam as he was told he would lose colon and most of his stomach or it may also need transplanting.

In March, Adam started the vaccination course that Kings wanted, which was 2 x HEP A, 3 x HEP B, 1 X MENINGITIS, 1x BCG, 2 x ROTAVIRUS, 2 x SWINE FLU. Adam also had a heart function test and heart scan.

In April Adam had to have his wisdom teeth out and they were still under his gums. This was just in case they cause problems after transplant, so they had to cut his gums to get them out. Bless him, he was bruised, swollen and had stitches. He also had a course of urokinase and an ethanol lock for his central line problems that month.

By May, Adam’s central line was still causing problems, so another ethanol lock was needed. At a meeting between KINGS AND GOSH they decided Adam does needs a transplant and they can offer no other treatment. The surgeons all say it is to dangerous to go into Adam’s gut and have a look before transplant. Last time the surgeon had to call 2 other surgeons to help and to do his stoma it took 3 of them 9 hours. This has been really hard for Adam and he is now suffering from depression and anxiety so they started him on fluoxetine to help.

By June, Adam’s dehydration was becoming more of a problem in the hot weather so he is now 24/7 on his drip. He also sat his GCSEs at home at he hasn’t been to school for 3 years and he has home medical schooling.

In July Adam was put on the transplant waiting list – it has taken such a long time to get to this. Then Adam got a line infection that spread to his blood and then on top of that he got tonsillitis. We had another stay in hospital and lots of IV’s antibiotics but this time his gut stopped tolerating all other meds as well. All meds now have to be done IV.

Adam has been a little more stable in August, but his gut still won’t tolerate oral meds. Adam also started treatment for his colon which is short chain fatty acid enemas and are very unpleasant for Adam, he hates it but he has ulcerative colitis and diverticulitis as well. Adam’s nurse comes round every week to do this at home which helps as he really doesn’t like it. Adam’s platelets and neutrophils have also been low so they are keep a close check on him, lots of blood tests and they can’t use the central line. His dehydration is still a big problem but this won’t get better until he has the transplant.

Update 15th May 2011

Adam’s j-peg operation went well and we are now on top of the line infection which is good news. Adam has been transferred to Poole hospital and we are hoping he will be home this week, yippee!

Update 5th May 2011

Adam’s j-peg operation went well and we are now on top of the line infection which is good news. Adam has been transferred to Poole hospital and we are hoping he will be home this week, yippee!

Update 21st April 2011

Adam is home for Easter on tpn and peg feeds. Adam has to go back next Tuesday to start other treatment. Thank you all for your support.

Update 10th April 2011

Adam has lost a lot of weight from 54kg and is now 47kg. TPN stopped but he has had a bowel blockage already. He went back to saline for 24 hours and now we are starting pegs feeds up to 10mls per hour with saline. The problem is he is getting more and more tired and is in pain. Adam is getting very upset with the doctors as he feels they don’t listen to him. He has asked to speak to the surgeons about the pain he is in as he never had pain when he had a stoma.

Thank you for the box of wonderful goodies and for all the support you are giving Adam and our family. Also thank you for all the cards and well wishes as it really makes Adam smile. Adam will be in Kings for a while yet.

Update 25th March 2011

Adam’s bowel is still not working, he has lost half his colon and his small bowel is now made up from many bowel resections. The doctors are still hoping his bowel will start to work soon. He has lost about 5kg in weight so far. He is going to try peg feeds later today, starting at 5 mls per hour. The doctors want to put a j peg in but Adam has refused and said try his peg first. It looks like he will be here for a good few weeks more.

Thank you for all the post everyone has sent.

Update by the Post Pals team, March 2011

Adam received his call and went to theatre. He didn’t receive his transplant though and spent many days in ICU. He is now back on his normal ward and is in need of some smiles in the post.

Update 2nd February 2011

Adam has been on the transplant list now for 7 months and is finding it stressful. We had a false call – the ambulance came and off we set but when we got half way the transplant team called and said the surgeon had just refused the organ. We were told to turn round and go home and wait again. Adam was very grateful to the other family that wanted to help and was very sad for them as they have just lost their child. That evening we lit a candle for them and said a little prayer.

Adam has also sat some GCSE exams at home as he isn’t well enough to attend school. He thinks he did ok, so cross fingers for him.

Adam had all the pre transplant tests done a year ago now and has to have most of them done again now. One of Adam’s doctors decided he wanted Adam to transition to adult care and refused to do it properly, he just transferred him. Adam hadn’t even met his new doctor and this caused a lot of stress and we had some problems with his tpn. Adam is getting low in iron and the doctors think he will need to start infusions soon and he is low in vitamin D so he may have to have that infused as well.

We are looking forward to his birthday this month and thank you for all your support.

It has been lovely getting cards and well wishes from all over the world. Thank so much everyone for caring, it bring lots of smiles. Thank you for your kind and thoughtful gifts too. They really do make Adam smile when he is having a tough time. It’s really amazing that so many people are so caring and thoughtful. Thank you from all of us for supporting Adam.

Update 8th January 2011

December was a good month and the only problem Adam had was his central line keeps blocking so he has to have urokinase infusions to unblock and a couple of ethanol locks. The doctors have increased his calories again in his tpn to 3000 per day as weight gain is very slow. Tiredness is still a problem and Adam doesn’t like going out, but overall a good month.

Thank you to everyone who sent Adam Christmas cards and postcards, we were amazed at how many Adam received. Adam had cards and well wishes come from Japan, USA, Australia, New Zealand, Finland, China and many more. Thank you! He also had a lot of cards from home as well. Some of the cards were made by children and others were personalised. Thank you for all your kindness and support.

Thank you also for the gifts Adam received, they were amazing and lovely. Adam loved all the smellies, Stig and Top Gear presents. The orange t shirt he wore on Christmas day, the 007 cars he has on his window in his bedroom, the calendar on his door, and the dvds he is saving for when he goes into hospital. Also, the rotating picture cube and the maze ball, the picture which was hand painted and the magazines and car information were all great, thank all so much for caring.

Update 2nd December 2010

It’s been a very stressful month emotionally as we have met again with the transplant team. They are doing everything they can to get a transplant as soon as possible, but they have increased the size of the donor organ now twice, as they think the transplant needs to be done sooner. The problem with this is Adam will have an open graft and a lot of operations to close his tummy after and Adam is very upset by this. The risk of infection is higher so it’s understandable that Adam is feeling anxious.

Adam said thank you for all your support and sorry he is feeling down and he hasn’t replied yet to letters or emails. Adam doesn’t get out much (only twice this month) so your letters and cards are most welcome. Thank you to you all for supporting Adam.

Update 5th November 2010

Adam has spent some time this month back in hospital and had a worrying few days when we lost tpn feeding. Adam had an allergic reaction to a batch of his feed. Adam has no other means of feeding so it was very stressful but we had a new batch made up which took a few days and so far all is good. We also lost access to his central line as that blocked but with urokinase put in the line for 24 hours it cleared the line. However he had to have a canular in and with damaged veins it’s not nice and as he had no feed for a couple of days he lost 3kg in weight.

We met with the transplant team and had words of caution from the surgeons because he is not putting on weight with the tpn and it is not doing its job anymore – it is keeping him stable but nothing else. Adam was first listed for transplant as lifestyle, but that has changed and he is now listed for survival. They think the tpn will stop working in the future and Adam needs his transplant now for the best chance of survival. I’m so proud of Adam as he asked all the right questions and listened to the doctors. The surgeons have also said they think Adam is at greater risk of an open graft as he has a very small abdomen. This will mean more operations and a higher risk of infections after.

Thank you for all your cards and letters this month, Adam will try and reply. It was very kind of Kate and Post Pals to send Adam a gift package of Halloween goodies – thank you. Thank you also to Debbie for sending Halloween goodies – Adam made a Halloween pumpkin face with your wonderful gift. Thank you to everyone who has sent letters, cards and gifts, it is very kind of you.

Update 17th October 2010

Just a quick update on Adam. He is in hospital and is unable to have tpn which is a worry as he has no other means of feeding. Every time he is put on tpn he comes up in a painful rash and he is showing signs of being allergic to his feed. I will keep you informed.

Update 1st October 2010

Adam has had all the routine hospital appointments and blood tests etc. Adam’s biggest problem still remains the amount of time he spends each day on his drips. It means he doesn’t see his friends much (only twice this month). He is very isolated most of the time so your letters, cards and well wishes, are good for him.

Adam has a very good community nurse who comes out at least once or twice a week to do treatment at home and to keeps an eye on how dehydrated he is getting. We do all iv’s at home now which really helps, as Adam doesn’t like going to the hospital.

Thank you Post Pals for all you support. Thank you to everyone who is wishing Adam well. It’s a very stressful time with Adam being on the transplant list so thank you for thinking of him and caring. Thanks for the lovely cards and letters and to Hannah for the chuckling monkey, it’s very kind of you. Adam also received a lovely balloon with a happy smiley face and a lovely pillow case which he keeps on his bed.

Story written 2011

Aaron was born at 39 weeks on the 27th March 2000. He weighed in at 5lb 12oz and he was so little he could fit into his Daddy’s hand. He struggled at first and the doctors had to give him oxygen to help bring him round a little, as he was very drowsy.

When he was born the doctors noticed that Aaron had undescended testes, which can be quite common in boys, but they could not be felt higher up at all. They decided that a hormone test and a chromosome test should be done to see what was causing the problem. After an agonising 2 week wait for the result, the hormone test came back normal but the chromosome one came back abnormal. It was explained to us that Aaron had a re-arrangement of his chromosomes, he had too much of number 14 chromosome and not enough 18 chromosome, but as it was such a small amount they didn’t know how it would affect Aaron. The Doctors had not seen this before so did not know what the future held.

Aaron didn’t like being fed and because of a very high palette he had trouble eating and swallowing. After battling for 7 years Aaron had a gastrostomy fitted. This was the best thing we’ve ever done as before he was so fragile but after the gastrostomy he put on weight and got heavier and stronger.

Aaron suffers badly during the winter months and often ends up in hospital where he is well known. At one point he was going into hospital every six months but now it is just once a year. Aaron will start off with a slight cold but this will get worse and turn into pneumonia requiring IV antibiotics, IV fluids, oxygen and nebulisers and a week in hospital. He does suffer with asthma but this is controlled with inhalers.

Aaron also has cerebral palsy. He is unable to sit unaided and is wheelchair bound. He does love to lie on the floor though. Aaron is a very happy boy and loves to interact with other children. Even though Aaron can’t speak he can make sounds. He can wrap anyone around his little finger and always gets his own way. He is such a loveable young man and loves his little brother jumping all over him.

In March 2010 Aaron underwent a fundoplication operation. He was not his happy self after and in July had to undergo another operation to loosen the tie off. He is now getting back to his happy self. He has been extremely brave and always comes out at the other end with a massive smile on his face – that’s why we all love him so much!

Update 25th February 2018

We have had a long hard think and have decided we are now ready for Aaron to move on from Postpals, he is coming up to 18 anyway and we’ve had many happy years with Postpals and now want another child to experience the smiles that you have given our family. We can’t thank you all enough for the wonderful happy post & definitely lots of smiles also the support when things have got tough with Aaron’s health. We cannot thank you all enough for everything you have done for us, you are an amazing team of people, from the bottom of our hearts THANK YOU

Update 15th October 2017

Aaron is doing ok, he’s had his usual chest problems, but luckily with the help of his nebulisers we have kept him stable and out of hospital. He’s recently had a check up with his hips and this is still ongoing and we’ve got to closely watch him and then go back to see the surgeon.This is to see if they will just wait and see if they’re dislocated or if they will operate to put it back into place. He had his eyes tested yesterday and been told he now has cataracts, but no one will do anything about it due to his health conditions. Your post always cheers the boys up and makes them smile. Thank you to all the people behind the scenes who make Post Pals what it is today.

Update 26th June 2017

Aaron is doing okay at the moment, we are waiting to undergo heart tests as he keeps going into SVT (high heart rate) for no apparent reason, so he has been referred for 72 hour ECG to see if this is heart related or if it’s brain related. We think it may be related to the heat with it being so warm. So looks like it might be body temperature related, like overheating. Fingers crossed tests will confirm this and it’s nothing heart related. We are still monitoring his hip as may need an operation on that in the coming months, but the surgeon asked to monitor him to see if in pain and if we think he is then they will look at operating.

Update 4th May 2017

Aaron’s had an up & down month, had few appointments regarding different things, one being his hips. We have discovered he had a partial dislocating left hip, he had an operation on his right hip when that was dislocating, so we are expecting it to happen again. We saw the consultant last week and have to closely monitor him for the next couple of months, to see if we think he experiences pain when changing, bathing, moving & handling etc. Then we will go back to the consultant and see if he needs another hip operation to correct the left one.

We’ve had respiratory appointments as he has now contracted Pseudomonus again, which he keeps getting over and over again. This is a bacterial infection that causes lots of coughing up some very nasty stuff and a dry mouth. Also in the last few months we have noticed that Aaron keeps having SVT (where his heart rate shoots up) we are now hoping to get in to see a heart specialist to see what could be causing this, as it can last from a few minutes to hours, resulting in 999 call to hospital and then medication to bring it down and back to normal. We thought that maybe it  was infection related, but it just seems to be happening more and more. Maybe it’s the Pseudomonus that’s causing it, and he is having treatment for this, antibiotics and nebulisers twice a day.

But he always comes out the other end with a smile, and it’s thanks to all your post that keeps us and him going through all these hard times. Thank you from the bottom of our hearts.

Update 2nd March 2017

Aaron is poorly at the moment, just waiting on results to see if it’s just the nasty cold virus that’s been going around or if his lung infection has returned. If the lung infection has returned then it will be a case of returning to the nebuliser with antibiotics for at least 3 months, twice a day! Which Aaron is not a fan of!

Also not had great news the last few weeks, went to see the hip specialist and it turns out he now has a left dislocating hip, just like he had with the right one a few years ago, so now the specialist is consulting with the specialist at Sheffield children’s hospital to decide a plan of action. If they leave it and watch it, or go ahead and operate, as it requires an 8-9 hour operation, pin & plates in the hip bone, spica pots on from his waist all the way down to his feet and then the big bar across, for at least 3 months. So we’ve got to return in 3 months to discuss what they have decided to do.

So all the post the boys have been receiving has come at the right time to cheer us all up, you don’t know how much it means to us all thank you!

Update 9th January 2017

Aaron is doing ok, we’ve had appointments with the consultant, been re referred about legs as he’s not happy when sat for long times in a wheelchair so there maybe a hip problem, we’ve also been measured for a new wheelchair. Hopefully he will find that more comfortable.
Aaron also had been quite well over Christmas, we had to re start the nebulisers due to the Pseudomonus lung infection coming back, but up to now looks like the treatment is working and no hospital admission is needed.
Thank you for all the amazing gifts the boys have received over the Christmas period and the whole year, you guys are amazing.

Update 15th November 2016

Aaron has been ok. He’s had various tests as we thought the Pseudomonus has come back, but as yet they are all clear, but now the winter has started this is where Aaron does get poorly so we’re trying to keep him wrapped up and warm, hopefully the winter won’t be too bad and we have no admissions to hospital. Aaron has received some amazing post this month and it certainly does make him happy & smiley, really does cheer him up after a bad day or when he’s in pain with his hips/legs. Thank you to everyone who has thought of the boys and sent them letters, cards & gifts, it means the world to us all.

Update 6th September 2016

Aaron has been ok. He got blue-lighted into hospital a few weeks ago, just before we went on holiday as his heart rate hit 220 BPM for around a couple of hours so he had to go into hospital. But when he was in hospital they couldn’t find a reason why this happened, so they put it down to the hot weather. He has been referred to the heart specialist to see if there’s an underlying condition causing this as it does happen every now and again.

He had been retested for Pseudomonus as well as we think this has come back again, only been off the nebulisers for 1 month, so maybe a long term medication now. But waiting on the results of that.

We had a wonderful weekend in Chessington, was lovely to meet so many of the pals and families.

Thank you for the letters, cards & pictures & gifts the boys have received this month, always puts a smile on their faces. Thank you.

Update 9th August 2016

Aaron has been ok. We have now finished the antibiotic nebulisers, which he has had to have for 3 months due to Pseudomonas infection, which is an infection in the lungs, once you get it you never get rid of it, it stays there but you have to control it. So we have to wait and see if it flares up again now he is off the nebulisers. If it doesn’t then great, but if it does we have to give Aaron nebulisers twice a day every day, over the winter months and see how he goes from there.
We went away to the Isle of Wight last week. The week before was very eventful as we were trying to get everything ready, making sure everything was packed up, Aaron decided to spark a temperature when the weather was hot! He then decided that his heart rate was going to spike to a whopping 220. We tried everything to get it to come down, but to no avail. After a couple of hours of his heart rate still going at 220 we decided to call the Drs. for advice, as the hospital usually only give him paracetamol and ibuprofen to get his temp down. So thought I’d ring the GP first. After speaking to them, they advised 999, so 3 days before going on holiday a trip to A&E it was, but as soon as the ambulance arrived and he was put in the back of the ambulance, his heart rate decided to go back to normal. It was as though nothing was wrong with him. Usually it’s the sign of an infection brewing. Luckily, lots of tests were done, but nothing was showing up as to what had caused it, so they observed him for a few hours and prescribed antibiotics, just in case he was brewing an infection and then we were allowed home. He has now been referred to a heart specialist, as this happens quite often when he spikes a temperature, so maybe looking into what can be done to prevent it, whether it will mean an operation or medication, we are not sure!!
But when Aaron is feeling low and poorly all your post helps brighten his day. Thank you from the bottom of our hearts.

Update 3rd June 2016

Thank you for all your lovely letters, postcards, drawings, cards & gifts, they do mean the world to us all.

Update 4th May 2016

Update 2nd April 2016

Aaron has had a lovely birthday month, thank you to all who sent cards, letters and gifts! We took Aaron away for his birthday to a lovely place in Northumberland, which had its own sensory room and hydropool. Aaron had a fab time, unfortunately on return he has come down with a chest infection and is on antibiotics yet again, hopefully within the next few days he will turn a corner. His heart rate has spiked a few times, but with lots of TLC he has got through it, but lots of disturbed nights for both Aaron and us. He is now on the correct medications and has started to settle, luckily no hospital admission or 999 calls needed, very close, but managed to avoid it.
Again thank you to all who sent both the boys cards,letters and gifts this month.It does mean the world to us all and has made Aaron’s birthday and Easter very special.

Update 3rd March 2016

Aaron has been doing ok, we have had a few ups and downs due to leg problems again.We are waiting for an appointment to see the consultant to see if anything can be done and what could be causing it, as it’s beyond painful for Aaron. He cannot straighten his leg and is currently having to be given paracetamol and ibuprofen at regular intervals.

All your cards, letters and gifts really do cheer him up when he is down, and makes him and his brother smile.
Thank you, it does really mean the world to us.

Update 9th February 2016

Aaron has had a good January, he has settled back into the routine of school. But he is still having trouble with his legs and we are still waiting for an appointment to see the specialist. But with the help of his upped dosage of  muscle relaxant he is managing well and also his Radox bubble bath is helping. His stomach issues are still on-going, but again with the help of medication this is being managed.

Thank you to all who sends gifts, cards & letters, we love reading them all. We are in the process of trying to write back to people who send us post. So if you could pop your address on the letters, cards & parcels, we would love to write back to thank you all personally.

Update 5th January 2016

Aaron has had a good Christmas, better than last year, which saw him in hospital. We have recently found out that he has lost lots of weight due to his change in feed to help with his ongoing stomach issues. So put him on a gentler soya based feed, but this did not have enough calories, so he has lost nearly 2 stone since July. After talking with the dietician they have changed his feed again, fingers crossed it seems to be working and the weight is slowly going back on.
We are still waiting for  an appointment to see a specialist regarding leg issues, as he suffers badly with cramp.After speaking with Aaron’s consultant, he referred him to a leg specialist, so he can assess if his hip has dislocated again or if it’s his muscles that are going into spasm. If that’s the case he may need Botox injections or the muscles cutting slightly to relax them.He wakes regularly through the night with the spasm, so hopefully won’t be too long before he gets an  appointment.
Aaron’s chest has been ok, but we think the 3 antibiotics that he’s on for his stomach are helping with his chest.
Thank you to everyone who has sent cards, letters & gifts to the boys, it means so much to us all, from the bottom of our hearts, THANK YOU.

Update 2nd December 2015

Aaron is doing ok at the moment, he has been up and down but mainly with stomach infections.He is now on 3 lots of antibiotics once a month to help keep it at bay, but this has an effect on his bowels, so not nice for him. The dietician recently changed his feed due to his stomach problems and put him on a peptisorb type which is gentler on his stomach. This has caused him to lose over a stone since July, which isn’t good. Now his overnight ventilation is causing him problems, due to it  being loose fitting, as he has lost lots of weight on his face.So  we had to get the respirator out and have got to order new mask etc. Because it has got to have be tight to keep it working right, it is now causing blisters on his face, even though we have dressings for it. We are hoping to sort his feed out soon, ( I hope) we are waiting for the dietician to get back in touch with us regarding this ,as it can really affect his health if he loses too much weight,as he can’t fight the winter bugs.We also have an emergency appointment on Tuesday next week with our paediatrician, due to Aaron having a lot of pain in his joints. When we lift him out of his wheelchair his legs are so stiff and cramped he screams in pain until we stretch them out and massage them. It can take up to 1 hour for his muscles to relax, hopefully there’s nothing else going on and it’s just a case of upping his relaxant medication and not needing operations for it.

Update 14th August 2015

Aaron’s not had a great few months and has had lots of tests due to a stomach problem. We’re still not sure what’s causing the problem, but are trying lots of different things to solve it. His gastostromy feed has been changed to see if this is causing the issue (which has slightly improved things), but he’s still having discomfort and bad bowels. We’re back to see the stomach specialist at the beginning of September for test results and the next lot of investigations. Aaron may have to have cameras inside of his bowel to check that everything is okay, but it is a last resort. He has also suffered with his chest, resulting in a chest infection. The respiratory team are now putting him on constant antibiotics to see if this will help and fingers crossed he will have a better month now.

Aaron has enjoyed a holiday in Somerset recently. He loved being in the caravan, being by the sea, and being under trees and woodlands.

Thank you for all your post and gifts these past few months. It means so much to us (as a family) to still see smiles on the boys’ faces when they have such tough times. Their biggest smiles come from the help of Post Pals and the amazing people who take the time to think of them both.

Update 3rd May 2015 

Aaron has been well this last month, though he still had lots of hospital appointments due to him being quite poorly last year. We have had to see a heart specialist, due to high heart rate, to see if they can find what’s causing it to happen. It seems to be when he’s poorly or brewing an infection. They have said they can operate but at the moment it’s too risky, so we have decided to watch and wait to see if it occurs again and then discuss the matter further. We have also seen a kidney specialist, again due to his severe illness last year when he went into kidney failure, and we are still waiting on the results from that test.

Aaron is enjoying school and has settled back in well. Fingers crossed now the weather is improving slightly, that things continue and we stay out of hospital until at least the winter.

Thank you for all your kind thoughts, cards, letters and gifts for the boys. We appreciate every single one. We do sometimes struggle to reply but are hoping to get through them all in due course, as it means so much to us all.

Update 20th January 2015

Aaron and Matthew have both had it tough over the last few months. Aaron has had several chest infections from October and never really got over them. He also had his regular Botox injections beginning of December, which he recovered well from, then just two days before Christmas suffered with really high heart rate. This resulted in an ambulance ride to hospital and they had to get it under control with medication. He ended up being in hospital for a week with yet another chest infection, and we spent Christmas Day in hospital. It was not nice for either of the boys, but luckily a week later we get discharged and celebrated Christmas at New Year.

Aaron is now on the mend and enjoying settling back into school. Thank you to all of you who sent cards, Christmas cards, gifts etc, it really does make so much difference to the boys and makes them smile so much. We can’t thank you all enough as it means the world to us.

Update 18th November 2014

Aaron has had an up and down time of it over the last couple months. Now the winter has arrived and the colder weather, it causes aaron so much trouble. He’s had chest infection after chest infection resulting in lots of time off school and he has only done 4 days since the beginning of October. He has had different antibiotics but hopefully now he’s had the right one and has at last started to get back to normality (just about). He is still having a hard time at school and just doesn’t seem to want to be there. I think it is more to do with the fact that he wants to stay home and watch his television.

Thank you to all who have sent him and Matthew post as it does help put a smile on their faces, especially when they are not feeling too great. Fingers crossed the weather will not get too bad and we can stay out of hospital.

Update 8th October 2014

Aaron has had a good few months and he is now back enjoying school. He’s had a few illnesses (one resulting in a near dash to the hospital) but luckily with the support of his respiratory nurse we managed to keep him at home and look after him with the help of his ventilation and plenty of antibiotics. He is usually ok throughout the summer but now the cold weather is setting in and he’s back at school we are just waiting for all the bugs to start appearing.

Update 7th August 2014

Aaron has had a rough year this year. It started last October having his hip operation and being in pots for 8 weeks, to then this Easter having to be taken into hospital with what we thought was just his usual chest infection. However, the next thing we knew he was being rushed through into resuscitation and alarms were going off and all doctors and nurses were running around. Once he was stabilised he then got taken up to the children’s ward where he was put on oxygen, but things then went from bad to worse. His oxygen levels dropped and couldn’t be stabilised. They eventually got them stabilised, but with every doctor and nurse who was on the ward in the room with us I think – even an anaesthetist was called incase they needed ventilation. The next thing we knew he was being transferred to Sheffield Children’s Hospital by embrace (ambulance service).

It was the longest journey ever, even though it was only 30 minutes away. We arrived at Sheffield and when we got outside the doors, Aaron then had an SVT (abnormal heart rate) which went to high 200. We had to run through the A&E department on to ICU, where they were all waiting for him. Eventually, after 2 doses of heart medication, it stabilised. We were called into a side room and were told that he was critical and had had to be ventilated. It turned out he had pneumonia, a bowel infection that had led to septacemia, and he also had really low blood pressure as all his organs were starting to fail. The nurses were fantastic and fought to keep him here.

Luckily, 3 weeks later he was well enough to be transferred to HDU, but then came the problem that he wasn’t keeping his oxygen levels up at night. We were told that we may have to consider a trachy but after Aaron’s ENT specialist came to see him he thought he’d try to do a tongue procedure. This consisted of them shaving off the back of the tongue, removing his lateral tonsils, and opening his airways up. After only 30 minutes in theatre he was back on HDU, smiling as always. We were again told that because of the swelling he may need to be re ventilated as this had happened before. The next day he was fine with no apparent signs of distress and none came. The doctors and nurses were amazed at how he’d recovered. Luckily, after 32 days in hospital, we were finally told we could go home!!

Since being home he has done amazing well. He’s been so happy and smily until today, as he is a little under the weather but I think it is due to the heat and his brother having cold which he may be coming down with too.

Matthew was a star too as it was hard on him with us being away for so long. He stayed with his nanna and granddad and came to stay with us at weekends. The odd time we tried to get home to see him, he was so glad he cried and never left our sides. Now he always has fear that when we say Aaron has to go to hospital, even if just for a check up, he thinks the worse and that’s where all your lovely post and thoughts are brilliant – it makes him feel special and takes his mind off us not being there. All the post we got for Aaron as well was amazing. Especially the massive mickey mouse balloon, even the nurses loved him and wanted to pinch him, despite the fact he did scare them from time to time when he decided to move in the breeze!

Update 9th May 2014

Just a little update on Aaron. He is still in HDU but now back to his normal self. He is having a small operation today as the doctors think he has a very large tongue and it’s flopping backwards and obstructing his airways. They are going to slightly shave off the back of his tongue. It doesn’t sound nice but it’s meant to be like having your tonsils out. Hopefully this works as the next step is a trachy. Fingers crossed.

Update 30th April 2014

Aaron is truly a superstar. He’s been sat in his wheelchair for the first time in 3 weeks today. I didn’t think that would happen anytime soon. He is still taking things slowly but gradually getting there and hopefully we can get him home very soon.

Thank you to every one of you who has sent post to Aaron and Matthew, we even got a personalised photo from Mickey Mouse.

Update 26th April 2014

Aaron has now been moved to HDU. He’s doing so well. He had to have his second blood transfusion today, but it’s one step closer to home.

Update 25th April 2014

Aaron is doing well, he’s now off the ventilator and breathing well. He’s still needing support from his bi pap machine and oxygen, but he’s off the kidney dialysis machine for now to see how his kidneys go.

Update 22nd April 2014

Aaron is still on a ventilator in ICU. He’s on a kidney dialysis machine and they keep turning it off but his kidneys are still not wanting to work so has to go back on it. He’s doing well with the vent so hopefully he may be taken off later. He’s waking up very slowly but there is still a long road to go. He’s on TPN as he has got an infected bowel so can’t be fed at the moment. He’s had a right fight on his hands and at this precise minute he is starting to win this fight. Hopefully he’s still got the strength to fight it and we’ll get him home.

Update 19th April 2014

Just to let people know Aaron is seriously poorly in hospital. He’s in ICU on a ventilator, recovering from pneumonia and sepsis, which has caused his kidneys to shut down and so is on a kidney dialysis machine at the moment. Lots of things going on for him at the moment, it’s a very emotional roller coaster ride.

Update 6th December 2013

Aaron and Matthew have both had a tough time over the past month or so. Aaron has had major hip surgery which resulted in him having a 6 hour operation and 2 weeks in HDU, also needing a hip spica cast on his legs, which was removed on Monday and he is now undergoing intense physiotherapy as his leg does not want to work with being stuck in pots for 8 weeks. Aaron is in more pain now than when he had the operation as his muscles have all seized up, but slowly he’s getting there. We are all immensely proud of how he’s coped with the operation and having casts on for 8 weeks, he’s done so well and coped with it all and still come out of it with a smile on is face, he truly is an inspiration. He is also now on Bi Pap machine overnight, so that’s something else to contend with. There’s nothing like being thrown in at deep end, with operation and ventilation, as he has now been discovered as having sleep apnea. He’s not just shutting off his airways but also not taking deep enough breaths and getting rid of the carbon dioxide inside his body so he’s storing it up and causing high CO2 levels and low oxygen levels all at the same time. At the same time Matthew has also coped with it well and is an amazing support to his brother, he never moans and found it very tough while we were in hospital, so the post certainly helped cheer him up.

Again thank you so much for all the post the boys have both received, it makes them both feel special and it is lovely to see so many people care, it is so heart warming. Thank you is just not enough to express how much you all make them smile.

Thank you to all who sent Aaron and Matthew cards this month as they have both had a hard time of it with Aaron having major surgery and the cards made them both feel special. Thank you for all the letters received, each and every one gets read out to Aaron and the boys love hearing what you all get up to and where you have visited. It’s amazing to hear all your stories and to share them with us is truly heart warming. Thank you for all the lovely gifts received, as Aaron spent some time in hospital they really cheered him up, from music cds to dvd’s, to even receiving a funky pigeon, who sat on his hospital bed to keep him company along with a Mickey Mouse. The gifts certainly got him through a very tough time.

Update 31st August 2013

What a roller coaster of a month we’ve had. Firstly, we got a date for Aaron’s hip operation, so were all geared up for it, only to arrive at hospital to be told there was no bed for him. Then, after few changes, they decided they did have a bed so the operation would go ahead. Off we went to theatre to then discover Aaron had a very high temperature, so the operation was cancelled. He was admitted with a chest infection though, so the operation will hopefully be happening in the next few weeks. So, now we’ve got to prepare ourselves yet again, as we now know more about the operation and are not looking forward to it. Aaron’s got to go into HDU for as long as needs be due to the operation being quite major and it can lead to blood transfusion. He needs an epidural for pain relief and also a catheter fitted, and it’s going to be a long recovery period for Aaron. At the moment he’s just getting over his chest infection but doing it in true Aaron style, with a smile.

Aaron and Matthew have enjoyed receiving all your lovely cards and postcards, you all have created lots of smiles in our house. They have loved hearing all about what you all get up to in your letters, again lots of smiles created. Thank you from the bottom of our hearts for all the lovely gifts the boys have received, from DVDs and audio books to fuzzy felts, they do make the boys feel very special.

Post Pals is an amazing charity with wonderful people and we cannot thank you enough for the smiles they have given my boys.

Update 11th July 2013

Aaron’s had a good couple of months, he does suffer badly at times with choking but that is controlled with suction and medication. We are awaiting an appointment for his hip operation which will happen early August, which we are not looking forward to. Aaron will be in spica casts for up to 3-4 months depending on healing and recovery, so its going to be a very difficult time for him.

Thank you for all the cards and postcards received for Aaron and Matthew, they love hearing your stories and where you’ve been and what you’ve all seen. Thank you for all the letters received for the boys, they all get read out to Aaron and he loves hearing all about you. Thank you for all gifts received, Aaron and Matthew love receiving them and appreciate every one of them.

Update 11th May 2013

Aaron has been up and down this month, he still seems to be having problems with his stomach, and is not tolerating feeds very well for a few days then he springs back. Hopefully we will have more answers when go back to see the stomach specialist on Tuesday to see whether he has still got the bacterial infection. We are still awaiting a date for the hip operation which is happening in August sometime.

We are looking forward to hopefully getting to the Post Pals party this year and meeting up with Post Pals themselves and the senders of post.

Thank you to everyone who sent the boys postcards, they love looking at the pictures and reading all about your travels. Thank you to everyone who sends the boys letters as each one gets read out to Aaron and lots of smiles are created by these letters. Thank you to everyone who sends the boys gifts to as they love each and every one of them.

Update 7th April 2013

Aaron has had it tough this year up to now. After discovering he has helicabacter infection, he has now finished all treatment and it has made him so much happier. We don’t know how he’s coped with it for so many years, it must have been extremely uncomfortable for so so long. He still has symptoms from time to time but not half as bad as he did.

We are now awaiting an appointment for major hip surgery as he has a partially dislocated hip, which should be happening around August time, which will leave him in spica casts for up to 8-12 weeks. Something we are not looking forward to! It will not be nice for Aaron as he likes to kick and move his legs and has just figured out how to push himself if he digs his ankles into the floor.

We would like to thank everyone who sends the boys cards/postcards – each and every one gets read out to Aaron, they do make him smile so much. We would like to thank every one who sends the boys letters, they do brighten their day and make them smile and feel special. We have had amazing gifts this month and they do make the boys feel very special and thought of so much, it is amazing to think so many people understand and care, thank you is not enough for the kind people from Post Pals.

From the bottom of our hearts we say a very big thank you, Aaron has had it tough this year so far and it is amazing to know so many people care.

Update 5th February 2013

Aaron has had it quite tough over the last couple of months, he has undergone various operations and tests, including botox injections in mouth to help with excess salvia and choking, also botox injections in leg muscles and had hip investigations which is requiring major surgery in August time, meaning he will be in spica casts for up to 3 months and will be fully housebound. Also, he has had camera investigations into stomach and it has been discovered that he is suffering from helicobacter infection causing bad stomach cramps and sickness with every feed. He has been put on yet more medication, had 2 week course of antibiotics which made such a difference for him as the specialist told us he has probably had this condition since pre school age(!) and it has never been picked up before!! Aaron then stopped the antibiotics which made all the symptoms return so has been put on another 2 week course to see what happens this time. The 2 weeks of antibiotics should clear it up, but as yet that hasn’t happened.

Aaron and Matthew enjoy reading all your cards and postcards and stories of what you all get up to! They both love all the gifts they receive too, they make the boys smile so much. It is so nice to know there are so many lovely people out there. Keep up the fantastic work Post Pals!

Update 11th December 2012

Aaron has had a tough couple of months, he has been having lots of investigations to find out why he’s struggling to take his feeds and why he is not quite himself at the moment. He seems to be constantly in pain and was admitted last week for a colonoscopy and also a camera down his throat to assess if anything going off inside. They have discovered inflammation of the bowel and have prescribed 6 weeks steroid medication. We are due back at the consultant on 8th January for all results, then back to hospital on 18th January for botox injections to his legs and maybe a hip operation (depending on pre-op assessment on 8th January).

However, all the post the boys are both receiving are making them feel very special and helping them to cope while in and out of hospital. Aaron enjoys all the cards/postcards that he receives, he loves looking at all the cards/postcards from all over the world and Matthew loves receiving them too. Aaron has enjoyed each and everyone of all your letters, all get personally read out to him one by one and he loves to hear all the stories and all the adventures that everyone gets up to, as does Matthew. Aaron and Matthew have also both enjoyed all the gifts that they have received, from all over the world.

Update 9th September 2012

Aaron has been up and down health wise. He made one day back at school after the summer holiday, then has been off the rest of the week poorly, but luckily is back to school tomorrow.

He was supposed to be having Botox injection into his leg/thigh muscles through the summer holidays but on our admission to hospital was told 3 hours later after they had him all ready for theatre that he was too high risk to operate. Now we’ve got to wait to see which consultant is brave enough to do it. I wouldn’t mind, but he’s had loads of anesthetics before and he does have a bit of bad time with them, but they should have already got his notes and been made aware of this. So now we’ve just got to wait until his surgeon comes back from his holidays to see where to go from here. In the mean time Aaron has to suffer in pain waiting to see when he can have these injections and also assessment for major hip operation.

He also undergoes botox injections to his salvia glands every 6-8 months which again is by general anesthetic, but it really helps him as he tends to choke on his secretions when getting ready for more botox. Mind you, last time they gave him too much and made him too dry.

We are also seeing his gastro surgeon on Tuesday as he is having a few problems with tube feeding at the minute. He always seems to be struggling to keep his feeds down and can become very poorly quickly, it is like a stomach bug which he never seems to get rid of and reoccurs every couple of weeks. We have to knock his feeds down or starve him for 24 hours to help him, but it is happening too often at the moment so we’re going to see if they can do tests to discover what is happening, if anything.

Aaron did enjoy going on holiday in August to Norfolk and was really well while there. He enjoyed going for a day out on a wheelchair boat that we hired! He also like laying and relaxing by the pool, even going for a swim which he loved.

Aaron and Matthew both enjoy receiving all your cards/postcards etc, each and every one gets read out to Aaron and they produce lots of smiles!! They also love receiving all your letters and hearing what you all get up – Aaron loves listening to us tell him all about your letters and again it produce lots of smiles and even giggles. All the gifts that the boys receive are truly amazing and they love each and every one of them, thank you.

Update 23rd February 2012

Aaron has had some down times lately due to infections, stomach bugs etc, and we have recently been to Sheffield for sleep study results too. He has to have them repeated in the next couple of weeks due to lots of coughing during the night, so has been put on a 4 weeks course of antibiotics which has caused stomach upsets. He then has to be reviewed to see whether he needs more antibiotics or whether the cough has subsided. At the moment the cough is still there but seems slightly better.

Before Christmas he had small operation to have botox injected into his salvia glands to help with choking, which has worked successfully. He did have a bad time in the operation due to sats dropping throughout the operation, but hopefully this will last another 6 months before having to go through it again.

Aaron has enjoyed receiving all your cards and postcards – as he has been quite unwell throughout this month with various bugs etc, the post has made him smile lots. Thank you. Aaron has loved receiving all your letters too and hearing all your news and what you are all getting up to. As he unable to read himself, every single letter gets read to him and he always smiles. They do really brighten up his day. Aaron has loved receiving all your gifts – from Mickey mouse stickers, to wall stickers for his bedroom, gelli-bath and upside down mirror which he loves looking at things upside down with!! He always has a smile when receiving gifts. A very big thank you to everyone who sends the boys post, you put a huge smile on both their faces.

Update 30th November 2011

Aaron has not had too many chest infections as yet, but as the cold weather approaches we’re just waiting for them to arrive. I’m hoping that he’s going to have a happy Christmas, as he has not had a very good one for the last 2 years and has ended up in hospital shortly afterwards.

In October he underwent surgery for Botox injected into salvia glands to help with his secretions. His oxygen levels were also dropping throughout the night, so while he was under anaesthetic they were going to do an endoscopy of his nose and throat to check his adenoids, to see if were obstructing his airway in any way. The surgeon did mention he would like to do an endoscopy while he is awake, but I don’t think that will happen, as no way can Aaron have it done while awake as he won’t keep still enough!! When he came out of theatre Aaron decided to have trouble breathing which scared not only us, but the surgeon and anaesthetist too. He was making a really funny noise and they first thought that his windpipe had collapsed and were all poised to intubate him, but luckily he decided to start behaving and didn’t need the tube down, to the relief of everybody!!

He recently had an appointment for his hips. We have been visiting clinic for a couple years now and his hips are getting worse as his right hip is displacing from the socket. He has been having x-rays on it for months now and the last time we went (3 months ago) there was talk that he will eventually need an operation to put it back into socket. This time at clinic, there was no change since the x-ray 3 months ago, so we’ve decided to leave alone at the moment and go back in 6 months. We’re dreading the day they say he has to have it done, as it doesn’t sound very nice, but we’ll cross that bridge when we get to it.

We have been to visit Santa a couple of times which Aaron just loves – think we’ve only got another 3 to see! Aaron loves going, he has the biggest smile!

Fingers crossed we have a good Christmas and Aaron’s health lets him enjoy it for the first time in few years. We want to see those big smiles on Christmas day Aaron!!

I’d just like to thank everyone from the bottom of our hearts for all the cards/postcards/letters and gifts that the boys receive, it really means so much to all of us. Thank you to all who send Aaron and Matthew cards/postcards and letters too. They love listening/reading what you all get up to, and where you’ve been on holidays etc. They really do mean a lot to us all and make the boys smile and feel special. Thank you also for the gifts received, they love the gifts that come, from balloons, drawing/writing things, puppet making, story books/musical books, it does brighten their day when they’re having a bit of a rough time. I think Post Pals is such a wonderful site, Viks and the team of volunteers deserve a special award as the dedication they put in is incredible.

Just one last thing – we wish you all a very HAPPY CHRISTMAS!!!!!!

Update 9th August 2011

Aaron had a rough start at the beginning of the year and was very poorly with pneumonia, but he has now got over that. He’s had a bad time since Christmas with bad chest infections/tummy bugs and he seems to just get over one thing then gets another.

We have enjoyed trying out a new bike which we hired from our local wood; it’s a bike where you wheel Aaron on to the front of the bike. He thought it was amazing as he loves going under trees and through the woods.

Aaron’s recently had a hip appointment as his hip is starting to slip out of the joint. We were told at this appointment that it has got a lot worse over the past 6 months. We’ve got to go back in 3 months and if it’s still looking like it could slip out and cause dislocation then it will have to be operated on. We’re hoping it’s not too bad when go back but it’s not looking good.

Aaron’s also had a sleep clinic appointment and an overnight study done. We’re still awaiting results but were told lots happened with him, so it’s looking like he may have sleep apnea, but it could be up to 4 weeks before results are totally in.

He’s also got an appointment at Sheffield Children’s hospital next week as he’s having trouble with secretions again and it is causing him to choke quite badly. It’s also upsetting his stomach, so is causing lots of retching with his gastostromy feeds. Hopefully he can have another dose of Botox in his salvia glands, as it helped when he had it 6 months ago.

He still manages to smile in between all this, especially when your letters / cards/ gifts arrive. Words cannot express what a wonderful thing Post Pals is and how wonderful people are. Aaron amazes us all where he finds his inner strength to keep smiling.

Aaron and Matthew love receiving post and hearing from you all and what you get up to. Sorry if we haven’t written back but we are in the process of returning letters, they are a bit delayed at the moment with Aaron being poorly, but the letters always make the boys smile. Thank you to all who send Aaron and Matthew gifts too, as they love receiving them. The smiles on their faces when receiving any mail just makes our day, and of course the boys. We’ve enjoyed making solar systems, sock puppets, sticking stickers, Mickey Mouse glow in the dark stickers (which we are saving for Aaron when he has his bedroom decorated in Mickey Mouse). Post Pals is a wonderful thing, it’s so nice to know people care, and Viks and the team do a fantastic job.

Update 29th June 2011

Aaron had a bad start to the year. He was really poorly over Christmas and didn’t even open his presents until January as was just too poorly. He was admitted to hospital on New Years Day as his oxygen was in its low 70’s. He had blood tests taken to find what was wrong and it was suspected that he had developed pneumonia. He was on iv antibiotics and was in hospital for just over a week. He is well known on the ward and all know his name.

It took him a while to get back to normal, as it always takes him a good month to completely recover.

We then had a good run with Aaron. When he was in hospital his oxygen levels kept dropping to low 40’s at night, so we have now got to go into Sheffield hospital overnight for sleep apnea testing, which is happening on 2nd August.

In May we went to Mexico with Aaron’s grandma and granddad. There were 11 of us altogether and we had a great time. We went on a pirate boat with Captain Jack Sparrow and Aaron was allowed on first to meet the pirates and have his picture taken. We also went swimming with the dolphins, which Aaron loved and he smiled the whole time.

Aaron suffered quite badly on the flight home as it was a night flight and he got a lot of cramp in his legs, but he finally fell asleep across me.

He went back to school then came down with a sickness bug, so had more time off school. He was just about to go back to school then he came down with a chest infection, so more antibiotics. Aaron was off school for about 2 1/2 weeks in total. He is now finally back to school and enjoying it.

When he is poorly your post just brings a smile to his face, he loves receiving all post. It is wonderful how you all send post to Aaron and Matthew also gets excited when he receives post – they can’t wait to open it! I would like to thank everyone who sends Aaron and Matthew cards/postcards, as they love receiving them from all over the world. It does really brighten their day reading happy news about what you are all up to. The cards really do make them smile. Again, thank you to all who send Aaron and Matthew letters, they love reading all your stories and places you’ve been. They love receiving Dottie the Dalmatian stories too. Thank you to everyone who has also sent gifts, they love opening them, the excitement on their faces is indescribable. It’s lovely that Matthew gets gifts too as when his brother is having bad days and is poorly it makes him feel special. You don’t know what that means to us as a family.

Update 17th May 2011

Thank you to all for Aaron and Matthew’s lovely cards, letters and gifts, especially their Easter gifts, it really does brighten their day.

Update 31st March 2011

Thank you to everyone who sent Aaron cards, letters and birthday wishes, as really did make his birthday special. Aaron loved the pom pom – huge thank you!!

He is poorly at the minute with a sickness bug which hopefully won’t last long.

(more…)

Story written 2009

Daisy was born 3 days before Christmas in 2004 and was 2 months early. She spent 8 weeks in the neonatal unit and was diagnosed with Costello Syndrome. She spent most of her first year in hospital, both locally and in Great Ormond Street, and was diagnosed with a number of issues including a heart defect, visual impairment, and severe gastrointestinal problems. Children with Costello Syndrome are at a 17% increase risk of developing malignant tumours and she is screened for these every 3 months.

In spite of her diagnosis of Costello Syndrome, Daisy’s clinical issues have not always been typical of a Costello Child, and her geneticists are now testing her blood to see if she also has another syndrome running in parallel and making her completely unique.

Her struggles with her gastrointestinal system came to a crisis earlier this year- she has always been tube fed and normally spends around 20 hours a day attached to a feed pump. However, in September, her symptoms worsened and her Doctors at Great Ormond Street discovered she has aggressive pan-enteric colitis. This is where the entire gastrointestinal system is scarred and ulcerated. It has been caused by her immune system going haywire and attacking her gut.

Since this diagnosis, Daisy has been dependent on Total Parenteral Nutrition (nutrition through a vein) for all her nutritional needs. The initial treatment to manage her condition with massive amounts of steroids has not worked and she is now on large amounts of immunosuppressants. As her immune system is not functioning properly, she is at high risk of infection and is currently on large doses of highly toxic antibiotics to manage a blood infection.

She has been in hospital for the past 6 months and is likely to remain here (with regular visits to Great Ormond Street) at least until early summer.

The diagnosis of Costello Syndrome meant Daisy had a reduced life expectancy because of the associated risks and problems. Her severe gastrointestinal disease and autoimmune issues have reduced that prognosis further.

Every day with Daisy is a blessing, she is a much loved and treasured daughter and younger sister to her 3 other siblings.

She faces each challenge with positivity and a fighting spirit and her strength of character and happy nature keep us going through the tough times.

Update March 2013

Thank you to everyone who has sent amazing post and gifts to Daisy recently – she is truly a very lucky girl!

However, Daisy has decided to take a little break from Post Pals so that other children can share in the smiles – she asks that you send post to those pals currently in hospital or on chemo and also the memorial siblings. Her special friends are Poppy H, Lydia M and Nico R (brother of Alicia R memorial Pal) – so if you were planning post for Daisy, please maybe think about these friends. Thank you xxxx

Update 20th October 2012

Sadly as I write this Daisy is facing the prospect of yet another major surgery, she has been having more and more problems with her bladder over the summer and while she was in hospital this summer having her hickman line changed (as the result of a break and infection), her urology surgeon had a good look at her mitrofanoff stoma which we use to catheterise her bladder. It has prolapsed but that in itself does not explain all the pain so he has decided to operate to have a better look and repair the prolapse. Daisy also had another admission this summer for endoscopies – these show continuing inflammation in what remains of her small bowel. The small segment of large bowel that remains, her rectum, is severely inflamed and bleeds almost daily – as a result her surgeons have decided to perform a rectal excision.

She will therefore return to Great Ormond Street on November 9th for a major 5 hour surgery to take down and repair her mitrofanoff, remove her rectum and deal with any other issues they find – as always Daisy’s recovery time will be up to her and it may be weeks or months, but we will do our utmost to get her home as soon as she is off any intravenous pain relief. She really does not want to go into hospital again but her quality of life has deteriorated quite considerably over the past few weeks and she is becoming very exhausted and finding it difficult to manage the pain in school, often becoming angry and cross with her classmates which is so unusual for her, she also spends much of the weekend catching up on sleep and in her bed or wheelchair. The palliative team have pushed up her pain management regimen to tide her over until surgery.

If this wasn’t enough, we also begin long overdue investigations on the very real possibility that Daisy has occult spina bifida and a tethered spinal cord. If this does prove to be the case (it is known that with Costello Syndrome that this can occur) she will also need surgery on her spine to prevent further damage to her nerves. Sadly any damage that has occurred is now irreversible. Life is stressful and our other children find it very difficult to see Daisy in so much pain, particularly her big brother, Theo, who has a diagnosis of Asperger’s syndrome and is in his very crucial GCSE year in school.

Despite everything though we have had a good year so far, maximising time away from hospital by managing as much of her care at home as possible. We had a fantastic time at the Olympics and Paralympics and thanks to a new dry suit, generously funded by a charity, Daisy has been able to go swimming both at our hospice and at school without the risk of her stoma bag leaking, catheter coming out, or water getting into her hickman line.

Her regular post from Pals makes her day, especially our good friends Glad, Kim, Jenny & Kate and surprises like balloons and cards from Viks at Post Pals really do make Daisy’s day – she loves to get post and takes great pleasure in opening it up and looking at pictures on cards. We have had a lot of problems with our post office recently and despite arranging redeliveries these have on occasion not happened and parcels have been sent back, also sometimes post is delivered to the wrong house and it can be weeks before it gets to us – apologies if you are one of those people who has sent Daisy post which was returned, it’s out of our hands at the moment but we are working on a different c/o address which is a bit more reliable! In the meantime, to each and every one of you who writes to Daisy, thank you, our lives are very very stressful and busy with 2 children with additional needs and two others who also need our very limited time, we wish we could write back to everyone but please know that every piece of post is treasured as it makes our girl, and us, so happy to know that people are thinking of her and care. I will update when we know which ward we will be on in Great Ormond Street as Daisy will need her post more than ever then.

Update 6th May 2012

So many apologies for not updating, a lot has happened since our last update. Daisy had her colectomy surgery and her appendix was used to form a mitrofanoff channel to her bladder to catheterise her. She stayed in hospital for a couple of months but fortunately we were home in time to spend a lovely Christmas break at our Hospice. We have struggled and struggled with Daisy’s pain and infections and now I administer two Intravenous drugs to her nightly as well as her TPN together with a cocktail of medication which keep her bugs at an acceptable level and help manage the pain. We have had to resort to a couple of hospital admissions when her pain has been uncontrollable at home but now with the support of all of Daisy’s team we have agreed that all care is to be managed at home and we are all working to make sure she is kept out of hospital. There are no more procedures or surgeries that Daisy can now have that will offer any hope of cure or treatment, every thing is aimed at managing her symptoms and maximising her quality of life.

Saying this, she is having amazing quality of life at the moment, being at home for the longest period in her life has made her so happy, for the first time ever she managed a complete term at school and she is progressing so well, learning to read and has now started weekly horse riding lessons too, something we thought we would never see. It’s hard work having Daisy at home and having to manage all her medical care, some of which is so specialised many trained nurses are unable to undertake it! It is so brilliant to be a family together again though; we even managed a short break to France at Easter, amazing!

I have to say the biggest, thank yous to two amazing Pals – Glad Shrubshall and Kim Lawrence – the regular post and gifts from them make Daisy so happy, it’s just so lovely that we are very much part of their lives, they are part of ours as we always recognise the handwriting on cards and Daisy loves to hear all about Baby Stevie, Kim’s little boy! I hope we get to meet Glad and Kim one day, they are such special people! We are also looking forward to meeting lots of Pals and Viks and Kate plus hopefully Jen M at the Summer Post Pals Party. We have so much to look forward to this year, we are living life to the full and living for the day and trying not to worry about the future – as I often remind myself “Yesterday is History, tomorrow is a mystery, today is a gift, that’s why it’s called the present”. You can read more about Daisy on my blog too.

Update 29th August 2011

Daisy is back in hospital at the moment. We have basically been in and out of hospital since February and have not had more than 2 weeks at home in a row or more than 2 weeks off IVs.

We made the decision for Daisy to have the colectomy surgery and this is planned for 9th September as a joint procedure with a Mitrofanoff procedure to her bladder. These are both major surgeries and we anticipate she will go to PICU post surgery and remain in GOS for around 3 months to recover. She will be going onto Squirrel Ward and will be admitted on 8th September.

We have such lovely people writing to the family, it gives us such comfort to know that people are thinking of us and we are not forgotten about – Daisy just loves getting post and gets so excited opening parcels or seeing her cards. Jenny, Glad, Rosie, Wendy & Kim are regular writers and we so appreciate hearing from them and all our Pals – we know you all have busy lives and it’s so kind that you give some of your time to help our little girl smile so much.

The children had a family discussion about Post Pals recently and they all decided that they love receiving Post Pals mail but they know that as a family of four there are more than the average number of children to buy for. The boys have asked if they could not have presents bought for them but they do enjoy the cards and letters. Xanthe loves receiving craft/art sets so that she can do them with Daisy but they unanimously said that the greatest pleasure is seeing Daisy receive presents and they would rather she gets gifts than them (unless they are things that they can do with Daisy, as in Xanthe’s case).

Update 9th June 2011

After 15 long and stressful weeks which included 8 anesthetics, Daisy has transferred to her beloved Chase Hospice for some respite for a couple of weeks. She has been left battered and bruised and mentally and physically traumatized by this stay. Sadly she will come home on even more pain killers and drugs and needing more interventions than before and this will be the story from now on. The doctors are now discussing her next major surgery which will be a full proctocolectomy and whether this is even safe to perform on her. Our only hope of this surgery is that it will remove the colitis which is the reason she is on immunosuppressants and steroids which greatly increase her risk of infection. We hope that we will get our longed for summer at home together as a family so that we can fill our days with happy family times and memories.

Daisy’s determination, strength and courage are inspirational. Thank you to everyone who writes to her – believe me, the cards and gifts really do make her day.

Update 31st May 2011

We had hoped to transfer to the hospice today but unfortunately Daisy’s hickman line has migrated and she will have emergency surgery tomorrow to remove it and repair the damage to her vein.

Update 25th May 2011

We’re still here in GOS. We are hoping to be home for the summer and then returning in the Autumn for the biggest surgery ever. Daisy loves to get post and Kate D saw how excited she gets when she visited us! It can really really brighten a long, stressful day.

Update 21st May 2011

Daisy is quite poorly at the mo and starting her 14th week in Great Ormond Street. She has had high temps for over a week despite being on several different IV antibiotics, her line cultures are negative but the docs are presuming this is the source of the infection as she is septic. The line is coming out on Monday and we are all keeping everything crossed she turns the corner then. She then needs a new catheter under GA and a new line, both done as separate procedures so 3 more anaesthetics to look forward to.

Update 26th April 2011

Thanks to all our pals for the lovely Easter gifts and cards – they really really brightened the children’s holidays and Daisy’s hospital wall.

We are waiting for a date for Daisy’s bladder surgery and to reduce TPN to a more manageable level. Still hoping to transfer to our hospice for a respite break in the summer half term then home – fingers and toes crossed!!

Update 15th April 2011

It has been two steps forward and one step back, as always with Daisy. This week we restarted feeds at 5mls an hour but it caused her bowel to prolapse and as it was losing blood supply and turning black, we were in danger of losing a 5cm segment. Cue the emergency bleep to surgeons who had to act immediately to save the bowel.

Good news is that pain meds through the jejenum have been restarted successfully and next week we hope to wean her off the IV ketamine. Bad news is that a suprapubic catheter is looking likely, so that will be 5 stomas/pieces of plastic tubing she needs to keep going. All milk feeds have been stopped but we are making progress, albeit in baby steps.

Update 7th April 2011

Hi all, Daisy has been in GOS for 7 weeks now, 6 of them on 24 hour TPN and IV ketamine. She’s currently in theatre having a surgical jejenostomy place so that we can have better access for painkillers which can be given when she is at home. The surgery involves creating another stoma which we know will set her back for a while as she does not respond well to anaesthetic or surgery, but we can begin to move forward once she has recovered from it and hopefully be home for the summer!!

Update 30th March 2011

Tomorrow we will start week 6 in hospital. We have been told that Daisy will be here for at least a couple more months and we will then go to the hospice for a stay before coming home.

It has been decided that the proctocolectomy surgery would be too dangerous for Daisy at the moment, so the doctors are trying to treat her with iv steroids. She has been on 24 hour tpn for the past month and the plan is hopefully for her to have surgery on her small bowel, to form a surgical jejenostomy so that she no longer needs a transgastric jej, and if it comes out again I can be trained to replace it.

We are waiting for a slot to have an MRI under General Anaesthetic to screen for tumours as Daisy has a very increased risk of tumour formation and the doctors are concerned this is the cause of her pain. The likelihood is that when we do get home it will be on intravenous pain relief; she has been on continuous ketamine for the past month supplemented with tramadol. She had a bad reaction to morphine so this is no longer an option.

On top of everything else she has already had two infections and IV antibiotics since being in hospital. Because she is permanently attached to drips and pumps we have not been able to leave her room and this means that family visits with the three other children can be very trying! We are finding this stay particularly hard as we just don’t seem to have had a break from the relentless hospitalisations and bad news for years. It was 3 months since her last admission and that was the longest we had spent at home in a continuous period since 2008. Everyone is working hard at getting Daisy home but it has to be at her pace and in a way that means she can stay at home for as long as possible and we can be together as a family.

Jenny Ault has been such a star at making sure none of us are forgotten and thanks too to Jane B, Kate D, Kim L, Viks & the Post Pals gang. Big thanks to the person whose name I have forgotten who sent the little Monkey tree house playset to Daisy. She has played with it constantly and I am on the lookout for similar sets as she has had such fun with it!!!

Update 3rd March 2011

Sorry for not updating for ages, as always life has been full on here. We had a lovely Christmas and on the whole things have been reasonably stable apart from the continued high stoma output and Daisy’s worsening night-time pain which is requiring stronger and stronger drugs. However we have not needed to make any middle of the night hospital visits which is the best thing.

We are now at the point that total removal of Daisy’s large bowel is looking like the best option. She is due to go back into Great Ormond Street for a week’s stay, during which she will have two procedures under two separate General Anaesthetics to look at her bowel function and also to replace her trans-gastric jejenostomy tube which came out again this week. We hope to meet with her surgeon to discuss the colectomy surgery and probable placement of a surgical jejenostomy tube which I could be trained to replace doing away with the need for an anaesthetic. We will also be discussing small bowel transplantation – although Daisy’s large bowel is completely dysfunctional and will be removed, it also looks like her small bowel is also dysfunctional in that it works too quickly – her options are either a lifetime on TPN with all the risks involved or small bowel transplant. At this point we don’t know if she would be a candidate, no child with Costello Syndrome has ever received a transplanted organ (or even had complete intestinal failure) so the risks may outweigh the benefits, but for Daisy’s sake we have to leave no stone unturned even if it is a route we do not pursue, we owe it to her to have tried…

At the same time as this has all been happening we have been coming to terms with Theo’s diagnosis of Aspergers Syndrome, something we had suspected for a long while. The turmoil of living with a child like Daisy is intensified when you have Aspergers Syndrome and crave routine and order and this has caused Theo considerable anxiety. We are currently going through the process of putting in place the support he needs and supporting him with his needs. I don’t think an easy path was mapped out for our family but we keep rising to the challenges!

Big thank you’s as always to all our Pals, our children love getting post and being remembered – Christmas was lovely with all their gifts from elves and thanks also to Jenny for taking our children under her wing – Jules loves her letters, especially the ones about all the scary creepy crawlies and spiders and snakes!! Daisy loves cards – especially the ones made by Kim’s Grandmother, they are works of art! Thank you for all you do, I feel guilty that I just no longer have time to thank everyone individually but please know that your cards and gifts really do make a difference and make our children smile!

Update 17th November 2010

A million apologies for not updating sooner, life continues to be hectic.

Daisy left hospital in early September and returned to her beloved school. She managed to have a whole 6 weeks at home, the longest she has been out of hospital in 2 years, which was wonderful, however by week 6 she had yet another infection and ended up back at our local hospital on IV antibiotics. The course of this infection was not as straightforward as before, her stoma poured out making her very dehydrated and needing a lot more iv fluid, she also seems to have become resistant to one of the IV antibiotics we normally use for her so these have all had to be changed. We transferred to our hospice for respite from hospital and she came home needing even more TPN than before to make up for her very low sodium and potassium levels and massive fluid output. Great Ormond Street would like her to come back in for another inpatient stay soon and we have negotiated this for the New Year as we really don’t want any hospital stays before Christmas if possible. They are hoping to see if there is anything that can be done to slow down her small bowel which is in overdrive, conversely, her now defunctioned large colon does not work and still causes her pain, especially as she continues to lose mucous and blood from her bottom even though she has an ileostomy. Andy and I have also decided that following this next in patient stay we will start seeking second opinions on Daisy’s management and treatment. At the moment all care is palliative and we have been told that a small bowel transplant is out of the question; however we do not want to leave any stone unturned in ensuring that Daisy has the best and longest quality of life possible.

Medical issues aside, we have had the most amazing experience this month – the whole family were taken away for a holiday of a lifetime to Florida, staying in a village specifically for life limited children and visiting the Florida Theme Parks – it was like something out of a dream for us all, we were part of a group of 22 families, supported by volunteer helpers and medics and were treated like VIPs everywhere we went. Daisy had the most wonderful time, the week before we were due to fly she was still in hospital, but in true Daisy style she made it and was fantastic for the whole week. It has given us all a boost, and the happiest memories we will treasure forever. We are now looking forward to celebrating Daisy’s 6th birthday on the 22nd December, there have been times over the past few years we did not think we would get this far, but Daisy is the most determined little girl ever and she embraces life to the full. She is wonderful and we are so happy that we have her!

Update 13th August 2010

Hi everyone – for those who don’t see my facebook updates, I have not had chance to blog for a while as Daisy remains in hospital following her ileostomy surgery. Following problems with post surgery infections, she then spiked temps last week as a result of her chronic bacterial overgrowth and the inflammation in her bowel coming back, then just as she was picking up she contracted parainfluenza!

On top of all of this her stoma output is massive, meaning she is on TPN for 20 hours a day plus fluid boluses and piggyback fluids and is still getting dehydrated – until this is more manageable she cannot go home and because of her problems with bacterial overgrowth and the flu, has been stuck in her room bar a couple of visits out for the entire stay. We hope to be able to get her to about 16 hours TPN and top up fluids and at this point we will be allowed (hopefully) to go home with regular bloods to make sure she is not becoming dehydrated.

Story written 2011

Faith became ill with a cough at 2 weeks old and at 5 weeks old she was admitted to hospital for ‘overnight’ observations, as her cough was not clearing. Two weeks later Faith came home having suffered whooping cough, croup and RSV. Faith also had a diagnosis of asthma and as a precaution was being tested for Cystic Fibrosis.

The results were unclear and by 8 months and several chest infections later, Faith was readmitted. Faith was very unwell and had lost several pounds in weight and was hanging onto life. With cannula’s, NG tubes and oxygen in place, Faith continued to decline and as her parent I prepared for the worst. As a final stab in the dark, Faith was retested for Cystic Fibrosis. The test came back positive and treatment began with intensity. Faith has had many ups and downs spending long periods of time in hospital and on intravenous antibiotics.

At the age of 9, Faith had her appendix removed in an emergency operation and a few weeks later developed an eye infection which again needed a hospital stay to clear an abscess in the back of her eye.

That summer, age 10, Faith was admitted with hip pain and over the next 2 weeks several joints became swollen and painful. In the summer of 2010, aged 12, Faith was finally diagnosed with Juvenile Idiopathic Arthritis, which means she has arthritis in more than 4 joints. Faith has it in her wrists, ankles, knees, shoulders and possibly hips.

Faith is a brave girl who rarely feels sorry for herself but like all children could really be helped with a smile or two.

Update 29th January 2014

Firstly can we thank everyone who sent Faith a card or gift over the Christmas period and also for all the support we have received.

It is with a lot of consideration we have decided to move Faith on from Post Pals as she is doing fairly well right now and in her last year at school. GCSE’s are fast approaching and she feels more able to cope with illness and admissions to hospital now. Faith has asked if her space could be taken by a younger child who will receive the love and support she has had over the past 3 years.

As her Mum, can I thank everyone who started as strangers and became supportive loving friends to us all. You have lived our ups and downs with us and we thank you all. You have created so many smiles for both Faith and Alice and it has meant so much.

I will post to Facebook the odd update if that’s ok as Faith will want to share her beautiful Prom pictures and exam results for the amazing people who have supported her.

As we leave Post Pals with happy memories, we thank you for everything, but especially our fabulous holiday and the friends we have made. To see your child smile because of a stranger is a truly humbling experience and one you can all be proud of.

Keep smiling and thank you. Love Kerri, Faith and Alice.

Update 4th December 2013

Faith has had a fairly ok month, she has continued to improve with her chest thanks to her inhaled antibiotic, and she has been able to attend school with no missed days which is fab. I had parents evening and Faith has, with a lot of hard work on her behalf, managed to really catch up with her GCSE’s, and is doing extremely well. It was a very proud moment to be told she is in with a really good chance of gaining an A grade in her child development exam!! We also looked into both 6th form and college, Faith wants to follow photography at college and we are waiting to hear if she can get an interview on a course that will give her a BTEC Level 3. It is a mixture of excitement and dread (my baby is growing up).

Faith had her ‘fake baby’ for a weekend this month and although it was hard work she enjoyed playing ‘mum’ and has realised babies are hard work, especially in the night.

Health wise Faith has been ok but she did have a very nasty fall at school and landed badly on her side, knocking her knee and ended up with a bruised knee that was very swollen and a deep bruise on her thigh that took 10 days to fully come out and is nearly gone now.

We have, as ever, enjoyed reading all the smiles that have been sent and it is very exciting already getting bits to sit under the Christmas tree. Our very special thanks go to Becci Willets who (whilst on holiday) kept us very happy as she sent an amazing cream tea through the post – all 3 of us sat down today after school and enjoyed every mouthful, she must know us too well as it’s a firm favourite treat in this household.

We have been busy getting ready for Christmas and as I (mum) am due an operation on 6/12 we have already put the tree up – this year we got a real one and we love it. Faith is especially proud of the lovely angel that she has with her name on, a lovely gift from Harry. We had a lovely day in London on Monday as we were lucky to be given tickets to watch the Christmas Special of Surprise Surprise being recorded and along with Alice and my Mum we had a fab afternoon/evening and we won’t spoil the surprises but we can tell you we met Olly Murs and he was as charming as ever!

We hope the festive season finds you all as well as can be and look forward to telling you all about our Christmas next month.

For now we will say our thank you’s to Libby (she knows just how smiley she makes us), Glad, Leslie (the sunny cards are great especially in winter), Liza (we love breaking rules too), Becci, Jenny & Fox, Chrissie (she’s never had such sparkly nails), Lydia & Lyn (she thinks you’re a nutty nanna(!) but loves hearing about your family). We hope we haven’t missed anyone.

Faith and Alice have just signed up to do a Skydive to raise money for The CF Trust. Faith has been given permission by her consultant and we will share more news about this next year, but the date will be 17th May. Faith has been asking to do this since she was 6 but had to be 16 to be allowed to do it and she is so excited.

Much love and a merry Christmas to you all.

Update 31st October 2013

October has been a very tough month, Faith has been continually coughing and wheezing and was yet again given oral antibiotics just days after finishing her last course. This didn’t seem to help so at her CF Clinic it was a tough decision as to go in for IV’s or stay home on steroids and a new nebulised antibiotic. We opted for home, so Faith is now on between 3/5 nebs a day increasing if she needs help to cough up any ‘gunk’. As you can imagine this is very time consuming for us all and tiring for Faith, she missed a fair bit of school and did her best to get in for controlled assessments and science exams that count towards her GCSE’s. She also made sure she studied hard at home and this paid off as she has achieved a B grade in her English controlled assessment which is 40% of her final grade!! To say I am proud of her is an understatement.

All the treatments seem to be keeping IV’s at bay and although Faith isn’t back to normal yet she hasn’t gotten any worse so we plod on with all the combinations and hope things improve. This is so tiring and stops Faith being a ‘normal’ teenager going out with her friends as she sleeps so much and doesn’t have time between treatments right now, but her friends pop in to spend time with her and she loves that.

As we approached half term I made a spontaneous decision to take Faith away for a weekend break, and my Mum came along and took over all of Faith’s treatments so I had a complete break too. Thankfully, we seemed to miss the big storm and had a fun filled weekend – we played crazy golf, pool and bowling, and then chilled in the evening after eating out watching the X Factor (a huge favourite of Faith’s).

We are enjoying a calm half term trying to get some visits in to friends but our main focus is to rest and relax. We are ending our week with a slap up afternoon tea with Faith’s best friend.

As ever, your post has been very welcome and has kept Faith smiling at such a long period of being under the weather. Thanks go to Emily, Emily McCauley, Meghan Penrose, Lauren DeVoogd, Teresa Fearon, A Cheryl Cole fan, Lyn (aka Naughty Nanna), Becci Willets who spoilt us all with beautiful bracelets with our names on, Rissy & Harry for Faith’s Fairy with her name on, Donna Hilton, The Lawrence Family, Erin, Dee, Jenny Opwood & Natashja, who kept us all cosy watching TV with our popcorn and hot chocolate, and Kerry Mason for Faith’s beautiful handmade bracelet.

Faith loved getting Becci’s postcards from her cruise holiday. The Halloween treat bag and goodies were fab, Faith is having green glittery nails for Halloween and we made biscuits with Becci’s cookie cutters.

Also, an EXTRA special thanks to those who sent Alice birthday wishes – we had a lovely day celebrating with family and friends – and especially to Libby who knows just how naughty she was but how much Alice loved her treat ready for December.

A huge thank you for all our smiles and I hope to report a great improvement next month. Much love to you all and thank you for your support.

Update 4th October 2013

It has been a difficult month with Faith going back to school as that is always a shock to the system, then Faith needed more antibiotics as her chest hasn’t cleared up properly, and then out of the blue her knee got sore and swollen and she was seen by the doctor and told she had tendentious. She was on crutches as she couldn’t weight bear and lots of pain killers. This was at the same time as we were going to watch Chelsea play football, so it was a slow day getting her there and back, but a great day was had and a win which is always good. We have started a second course of antibiotics so fingers crossed the chest will clear and we won’t need another hospital admission.

Faith is working hard at school and is loving being in year 11. We have started to look round local 6th forms and colleges as she wants to study photography, so we’re tying to work out the best way forward.

We have a CF check up soon and will discuss a port further at that appointment as Faith is keen to have one to avoid the continual stabbing with needles.

Our thanks to Libby, Becci, Toni and Karen (she loves the bracelet and sparkly nail varnish, well whats not to love?), Kim and little Stevie’s water project was a huge hit and the bath bombs were very welcome (especially with her knee needing a good soak in the bath), Theresa, Emily McCauley, Glad – if I have missed anyone I apologise but with Alice having a birthday this week it’s been hectic. On that note, a huge thank you to everyone who still sent cards and good wishes as it really does mean so much. Alice has settled into 6th form and has had her first driving lesson, which went well and she is so excited about driving.

Thanks for the smiles, lots of love and our love to you all x x x

Update 3rd September 2013

So, we have had a turbulent two months. Firstly, Faith had a fab time away with school in July to the Battlefields visiting the trenches, with lovely sunshine and a host of fun activities. Little did she know she would be hearing the devastating news that her old friend Lizzie had passed away while she was there. I spoke to Faith on the Monday morning they were coming home and broke the news, and as expected I was greeted with heart breaking tears and sobs and a Faith who was unable to carry on the conversation. Her teachers did a fab job of comforting her as did her amazing friends and she was able to get through the last day and journey home, quietly but without having to find the news online as soon as she landed back in English waters. The school had also lost one of Faith’s teachers that weekend and she had just been told the news of her child development teacher passing the morning I spoke to her. She arrived home and with lots of tears we came home and talked for many hours about Lizzie, Lucy and Rachel. We have been friends with them for about 5 years and Faith made the brave decision to attend Lizzie’s funeral. So with heavy hearts we got our hotel booked and made the journey, a beautiful service was attended by so many and a sad farewell, but we did finally meet some friends from the CF community that we have known for many years.

School was finished at the end of July and summer started, a lovely evening meeting up with Rissy, Ruby and Harry, was great fun as they were staying just a few miles away in the camper van. We so nearly also made it a double whammy as Tony Forder was nearish but logistics meant we had to put it off with appointments and distance, but we do plan to try and meet up with as many of our Post Pals friends as possible.

Faith was very well to start the holidays and enjoyed a fun day at Thorpe Park with her Aunty and had lots planned for the remainder of the summer, but the sound of a cough put a hold on that, it came out of nowhere and all combinations of antibiotic didn’t help. So after 2 weeks of fighting we went to see the CF team and Faith eventually went in for 2 weeks of IV’s and we are still on them, hoping to finish Tuesday just in time to go back to school Thursday! We have had talks about getting a port fitted so fingers crossed we will have news on this soon. She also had her new shoe inserts fitted so hopefully her walking will be less painful.

During this time Alice came home from Spain and we collected her exam results – I’m delighted to share with you all she did brilliantly and achieved 7 x C, 1 x B, 1 x A and 1 x A* so she is off to 6th form to do A-Levels. As many who are friends with us on Facebook know, Alice has been very unwell, getting rushed to hospital via ambulance with suspected meningitis. This was then changed to a suspected bleed in her brain, and eventually put down to a virus, but she is still struggling so we are seeing doctors again to hopefully get some answers. I will keep you updated but would like to thank the people who sent Alice get well cards and congratulation cards, she was totally delighted to receive them.

So life has been a bit all over the place but hopefully we will be able to settle down to some normality now.

Thanks go to Glad Shrubshall, Tony and Eileen Forder, Becci Willets (especially for the beautiful flowers she sent me and the nail art book as it has kept Faith entertained for hours in hospital), Libby, Laura J, Harriet, Jen Mellor, Rissy, Harry, Ruby and Lola, Sarah G, Rebekah, Natashya, Denise C, Daire, The girl guide’s from Leicestershire, Vikki – your kind words after Lizzie’s passing were so helpful to Faith, Loren C – the amazing cake card was fab, Kerry Mason, Dee, Jasmin Minshull, Karen and Toni, and Kim.

As ever, sorry if I missed anyone, thank you for the smiles and here’s to better news next month. Keep smiling.

Update 13th July 2013

June has been a mixed month with Faith, hayfever set in and she was fairly ok to start with but it slowly caught up and she has sneezed her days away. Chest wise she has been ok, but her joints have caused some major problems again (her hips being the main culprit).

We have enjoyed celebrating Faith’s step dad’s birthday and Father’s Day a week apart, Faith loves birthdays and made some yummy cakes. We also had a lovely christening with a very close family friends daughter followed by a BBQ.

We had an extra special treat as I was shopping in our local supermarket and some ice skaters from Dancing on Ice came in and Alice and I won some free tickets to the ice show. We can’t tell you how exciting the show was, especially as it was sprung on us. Alice gave Faith her ticket as she knows how much Faith loves the Ice Show, but it was a lovely evening and we had great fun.

We also had a lovely week at Center Parcs at the end of the month in Suffolk – sunshine all week and quality time as a family, all 5 of us. The children enjoyed riding the bikes everywhere and my partner & I enjoyed getting the odd 10 minutes to just sit and relax and watch the teenagers become children again having a carefree time. The highlight had to be our spa day, the boys went to play golf and I introduced the girls to relaxing in style. Faith kept asking what do you do for 3 hours and will now admit she was very apprehensive, but loved it and couldn’t believe the time flew by so fast and is now looking forward to many more!! It was booked to coincide with the end of Alice’s exams and we are so glad they are all done and she is now enjoying a long break in Spain with friends, so Faith and I are having some lovely time alone together at home.

I am a keen tennis fan so Faith sat with me to watch history be made when Andy Murray won his first Wimbledon, but she isn’t totally converted (yet).

Faith is delighted her football team have the old Manager back and is very excited to see Jose at The Bridge this upcoming season Also, our local team, Bournemouth, are looking forward to exciting times ahead in the championship, and are hosting Real Madrid in a friendly match. As a loving (or maybe mad mother) I stood in line with my sister and about 999 other people to get the hottest tickets in town, and on 21st July I will be sat in the East stand with Faith and my nephew. To say they are excited is a major understatement.

As I type this Faith is away with school on the battlefields trip with History, she was so looking forward to it, and I hope she gains some insight to the bravery of our past, it will move her I have no doubt of that, and I am just enjoying a rare time of both girls being away at the same time, but I am staying at my partners so I still have my stepson for teenage company.

I thank everyone for the lovely cards and letters and the gifts Faith has been sent, as I am not at home I do not have my list with me but a huge thank you to Tony and Ei for her Chelsea DVD, to Glad for everything she does for us, the Lawrence family for the lovely ‘making your mark’ project (Faith is looking forward to making the teddy and using it for story telling over the years with Willow, she decided it will be their special thing), to Libby as ever, and to everyone who took time to think of Faith and us this month.

On a personal note, thank you to everyone who wished me well as I had a hospital stay after surgery. It means a lot that you take time to think of me.

We wish you a sunny and safe month and love to you all x x x x x x x

Update 31st May 2013

Well the joys of April were very short lived and boy did May bring us back down to earth. Faith started feeling off colour at the start of the month and we soon discovered she had a bowl blockage, a fairly common CF problem and we can usually shift this at home, so it wasn’t ringing any alarm bells to me, but as the next few days went by it was obvious that although the blockage had passed, Faith was getting very unwell. She couldn’t eat, slept all the time and had a very high temp, dosed up on painkillers and nothing was bringing it down. So after a couple of phone calls to and from the hospital it was decided she needed to be seen, and results were she had pleurisy and a UTI, so a 2 week course of oral antibiotics and home we came, very relieved as Alice had her prom 2 days later and Faith was desperate to see her sister all dressed up.

Prom was fab and Alice looked AMAZING. The lovely Dawn Smith came in her beautiful Morris Minor, Millie, all decked out with ribbons and bows and drove Alice off in style. We have sent a separate write up for the evening to Post Pals.

Anyway the antibiotics were working their magic and Faith went back to school, only to start feeling very achy in her joints. Two days later she stood up and fell straight back down onto the sofa unable to weight bear on her hips, so more painkillers and after a very restless night we were back in A&E being seen very quickly, having blood tests and x-rays to find no explanation about all the pain, so home we came armed with stronger pain killers and crutches and told to go back if it got worse, but a fast track referral was made to be seen by peads. As the week went on the pain has got bearable and Faith is able to walk unaided but it’s still sore so we are just waiting for the referral.

Obviously this stopped most of our half term plans as we couldn’t go far, so we drove up to Portsmouth, to spend some time with my partner, just a small issue of a tyre blowing out on the M27 to delay us and we had some lovely restful days. We did however manage to go to Milton Keynes and the kids all went indoor skydiving, such an amazing experience for them and they loved every minute floating inside a dome and then at the end the instructor took them high flying where he held them and flew them to the top of the dome and down again at speed. We did however enjoy watching Chelsea win the European cup, and Faith was delighted with the news that Frank Lampard is staying for another year (as was mum).

As ever, your cards and gifts have been very gratefully received and Faith has become a dab hand at nail art, as she was able to practice while sat on the sofa, so a huge thank you to Sean Preece for that. Perfect timing.

We hope we have happier news next month and thank you all for your love and support as ever. Much love and keep smiling x x x

Update 30th April 2013

Well, we have had a very busy fun filled month, but most importantly and best of all, a really healthy month for Faith. We enjoyed a fun Easter with some time both with my family and the ‘in-laws’ and your cards brightened up our room where the weather failed, and after braving the cold we had a lovely couple of weeks off school with lazy days and simple family time.

Faith and I were lucky enough to go to watch Chelsea V Man United at Stamford Bridge in the holidays and a fab day was had by us both. In a bizarre turn of events we then met up with Alice in Covent Garden as she was going to a concert with a friend in London that evening, so it was lovely for the girls and I got some adult conversation with my friend.

We also decided it was time to tackle the back garden as it was very neglected last year due to a bad summer and Faith being unwell, so we now have a lovely tidy garden, with a clean jet washed patio and our sunbeds and hammock all ready for some lazy evenings.

Faith also saw a hand specialist who has designed some straps for her wrists so they are less painful at school and is working out a program to strengthen them.

April is also our birthday month as we seem to celebrate a birthday nearly every day, and after sharing lots of cake with everyone else it was finally Faith’s 15th birthday, which I am delighted to say she loved from start to finish. I have to say this birthday is probably the best she has ever had health wise and it was lovely to see her able to enjoy the day, beam with pleasure as she opened presents, and generally have a fun day. She was spoilt at school and we went out for a big dinner, taking her best friend with her along with my parents. She continued the celebrations into the weekend and then we had a weekend in London which involved seeing Beyonce in concert at the O2. The London Eye was amazing as the sky was almost cloudless, so we got to see lots of sights from all the different angles, then we went for a bit of lunch whilst we watched the busy London life fly by. Then we went on a London Duck tour which is a fab way to see the sights, it consists of going on an amphibious vehicle along the roads around the city of Westminster and then SPLASHDOWN, as the duck takes to water and sails along the Thames. Then we headed to Greenwich and went on the Skyline, seeing the sights at sky level. Then it was show time and in Faith’s words, Beyonce was amazing. We sang and danced along for the full 2 hours with sit downs at dress changes of which she had 12!!! We were all exhausted and both girls slept all the way home, so a very tired but happy household. To see the smile on Faith was priceless and Alice had her dreams come true.

Now for the all important thank-you’s. As ever, thank you to Libby (our house literally smells LUSH), Glad Shrubshall (too much to mention but to say she spoils us all is a huge understatement), Tony & Ei Forder (the Big Bang Theory T-shirt for her birthday was a huge hit), Michael & Maria, Natashja (we love hearing about Jasmine’s adventures), Sarah G, Becci Willets (lovely nail varnishes and sorry for giving the credit to the wrong person for her charms), Jenni, Jenny O, Bev, Kath Ronja Milla and Laura, and a huge thank you to Laura Mckeown for the amazing cake book – we simply cannot wait to get making.

To say it’s been a lovely month is an understatement and we have made the very best of Faith being well as we are very aware that this good spell can be short lived. To see her walking the dog in the lovely sunshine in the early evenings though is a sight to lighten many hearts, and I cannot thank you all enough for helping her get through the tough times and keep her smiles and spirits up, they are always very much appreciated.

We are looking forward to May as Alice gets to go to Prom, and Post Pals have given us a chance to help make it super special as the lovely Dawn Smith has offered to drive her in her beautiful Morris Minor. We only know Dawn through Post Pals so it’s amazing that we have made some amazing friends. Alice also starts her GCSE’s on May 10th and they continue through until 17th June, so I’m sure you will all keep her in your thoughts (and Faith and I) as she is very apprehensive and is doing her best to get through. We are very proud of the hard work she is putting in preparing for them.

Well, let’s hope the sunshine continues and good health stays with Faith, and as ever, may you all be blessed with smiles and the knowledge you do make a difference.

Update 30th March 2013

Well, March started with a trip to the foot doctor. Faith had casts taken of her feet so that she can get mounds and custom made inserts/splints for her feet to help ease the pain when she is walking. She found this very amusing as she had to hang her feet off the bed and couldn’t stop laughing whilst the plaster was shaped as it tickled so much. We should get the final product next month.

Faith also completed her work experience, which she loved, but was totally worn out with. She was told she was a delight to have and they would miss her happy smiles.

Faith continued to cough at the start of the month and was given more oral antibiotics.

We had a lovely weekend celebrating Mothers Day, followed by my birthday the next day. The girls enjoyed bringing me teacakes and tea in bed, and kept me with a full hot cup of tea all day – again, it was lovely to be remembered by many myself, and I can honestly say it did bring a HUGE smile to my face when I saw my name when the post was collected.

Faith had her very overdue ingrown toenails removed mid month, 2 toes 3 nails, so she was hobbling about and stuck on the sofa for a week. Although the procedure was very painful she dealt with it very well and is already feeling the effects of less pain when walking, so fingers crossed that as they heal completely they will make a huge difference.

Faith enjoyed her few days back at school before finishing for the Easter break, and has been very busy baking with her special Easter cup cake set she received, and they are looking great.

As ever, thank you all for the lovely post and especially to Natashja for the lovely bracelet and to Laura for the additional charm for the bracelet she received while in hospital – she is loving getting charms and always gets compliments when she wears it. We also want to thank Dawn Smith for the lovely Easter bags and to all for the Easter wishes and the chocolates and socks from Glad Shrubshall. Also to Michael & Maria for the Easter card.

We hope that Chelsea have a good result for our trip to the Bridge on bank holiday Monday, as this will be the last trip this season no doubt.

As ever, thank you for the smiles and we hope you all have a good month.

Update 7th March 2013

Well what a month we have had. As you know, Faith went into hospital at the end of January, on the day her cousins baby was due, and she was most upset that she might miss the new baby cuddles. Part of the deal she struck with her consultant was that she could go out to meet the baby when she arrived.

So Faith was on her usual IV antibiotics and resting well, in fact as each day went on she was sleeping more and more and it was apparent to all she was rapidly getting worse not better. She was delighted with the steady stream of cards and letters that came her way and they really did make her smile. Although she was feeling grotty, she was delighted to wake up to a photo on her phone of a new baby girl called Willow on the 6th February. She was all ready for going to see the baby the next day, but spiked a temp into the 40’s and was coughing so much she couldn’t eat and was clearly very unwell. It was decided she might have to postpone the visit, and the next morning as soon as her drugs had been put through her line, she had a huge allergic reaction and was covered head to toe in a very angry rash. She was obviously very scared and uncomfortable, but after some strong antihistamines she slept for most the day.

She continued to be very unwell for the next few days and eventually turned a corner on the Sunday night. Her antibiotics had to be changed and it was decided she would have to stay longer than the 2 weeks planned.

On the 11th February it was Grandma’s birthday and Faith was allowed to pop to see her for a cup of tea and she was delighted to meet Willow there and had a lovely cuddle – such a simple thing but it definitely made a huge difference. As the week progressed Faith got a bit better, and although she was still growing nasty bugs she was less tired and wanted to be home more than anything. So after 19 days we finally came home, and with lots more rest and chilling out she started to have some Faithy sparkle back. This admission was very hard as I was unwell myself suffering a very unpleasant kidney infection, so home was a very welcome sight.

Faith was able to then enjoy the first of a few concerts she had tickets for and off she went on Saturday night to see Little Mix at our local concert hall. She had a fab time and although she took several days to recover, she loved it. We had a very quiet half term, with Faith going to her grandparents for 2 days while I took Alice out Prom shopping. I’ll keep you updated on that in May. On the last day of half term Faith went off to her best friends for the night giving me some much needed rest, and she went off to London to see her favorite boy band One Direction at the O2 arena. I had several calls through the night, so I feel I lived the experience with her. She had the best time ever (her words) and after getting home at 2.30am(!!) she slept most of the following day.

The last week of February saw Faith start a 2 week work placement for school’s work experience and she is loving it. It is hard work and she is shattered at the end of the day but she is getting on and is lucky she only has to do 4 days. She is at our local hairdressers, a 2 minute walk, and I’m not sure how but she seems to get her hair styled most days.

So where do I start with our thank you’s this month? The list is long and I hope no-one has been missed off. First I would like to say thank you for the girls valentines cards as both Faith and Alice got a mystery card… Faith said maybe they were from Olly Murs but I have a sneaky suspicion they were from Dawn Smith. A special thank you to Libby, Viks, Sarah G (it was lovely to hear from you again), Karen (sami), Becci for the lovely letters and post cards, Dawn Smith, Jane, Becci Willets, Kaily O’Brien, Tony & Eileen Forder, Charlie, Karen, Kerry Mason, Jenny Opwood, Glad Shrubshall, Cath Booth, Harry and Lola and Jenny for all your lovely cards, many hand made or with her name and Faith loved them all. Her wall was covered. She loved her pamper gifts as well and was blown away with her ‘Faith is amazing’ chocolate. She has kept the wrapper, and her sparkly duck lip balm was admired by all the staff on the ward.

It has been a while since Faith had to be admitted to hospital and this one had some very scary moments, but your continued support was amazing and being made a featured Pal made Faith feel very honored. It made her hospital stay so much more bearable.

A special thank you to everyone who included Alice in February as, although she has moved on, she loved the fact that with Faith in hospital so many continued to think of her. She has just taken her Mock exams so is now busy revising for the real thing in May/June. As mentioned before, she is also busy preparing for prom and I will be sure to keep you all updated on that. I can however reveal she has the prettiest dress ever and the sparkliest shoes any girl could wish for.

As ever, we hope you are all well, and keep smiling. Keep safe and thank you.

Update 29th January 2013

January has been a tough month on Faith, she had her annual review and although they are happy she is plodding along they would have liked to have seen her bounced back from her chest infection sooner. Faith has continued on a part-time school timetable due to the fire, but she has still been very tired and coughs continually.

Yesterday she was finally taken into hospital for a 2 week course of IV’s as she is rock bottom and her body is not coping so well. She needs total rest and time to recover. Her liver results are looking OK, and again hopefully with time and rest this should improve. She will most definitely need an iron infusion during this stay as she remains very anemic. She could most definitely do with some extra TLC this month, and I have no doubt Post Pals will be the ones to bring a smile to her face.

Thank you for the lovely letter and cards that have been sent during January, it’s always lovely after the rushing about after Christmas. I will give a better update when I have better internet access and some more time. But for now, if you can take my thanks and I will wish you all well. Keep smiling.

Update 7th January 2013

Well, December was definitely anything but quiet. As mentioned before, Faith continued to struggle with the cough, bad back, and sickness, and although she managed to stay home for Christmas she was very tired and sleepy. We started the month with antibiotics and Faith missed a fair amount of school with her back and this has continued to give her pain, and although she went to stay with her aunt for the first weekend while I went to a long booked concert, she didn’t get out much and just pottered about, her cough continued and we had the devastating news about her liver and we await a scan on 21st January for the all important look about. We also had a podiatrist appointment the week before Christmas and it has been decided that Faith can have custom made foot supports to help her walking/pain management and also that she will need 3 more toenails removed due to ingrowing nails. This was a nice bit of good news during a tough time.

She became very unwell with her chest and had some very strong antibiotics and these left her very sleepy, but we did go to Portsmouth and had an early Christmas celebration with my partners family and although she struggled to stay awake for the whole evening she did enjoy her Chinese and had fun. We then came home to get ready for the big day.

Christmas day was lovely but quiet, we spent it with all our family and went to the local pub for a cooked lunch so nobody had the stress of cooking dinner, and a great day was had by all. We also had a trip to the cinema over Christmas and enjoyed a feel good film, Pitch Perfect. We had a very lazy day on Boxing Day and came back home to our own house that evening. An early night was in order for us all and we all looked forward to a long awaited lie-in, but at 6.30 AM our house was rocked by a huge lightening bolt, and woke everyone up, and sadly we soon discovered that the girls beautiful school had been hit by the bolt and was sadly burning down. I know many people have seen the reports about it on the TV and it was devastating. Sadly it appears that Alice has lost all her written work for her drama GCSE and her last exam performance, so we now have to wait for the exam board to decide how the grading will work out. Both girls were very upset about the fire, and it soon became clear that Faith will have a reduced timetable – having to do work at home via the VLE, which can work to her advantage as it means she can work at her pace from home.

We then went to Portsmouth for the New Year celebrations and had a lovely family night with our ‘in-laws’ and although Faith was mostly on the sofa she did enjoy playing with the younger children and came outside to sing in the new year, and we did manage a couple of trips to the sale – leaving it until late afternoon meant we missed the crowds and grabbed some bargains as well.

The return to school has been delayed due to the school being unsafe but as I type we are told the children will return on Wednesday and Faith will get days off on a rota basis while they try to get temporary classrooms on site.

Faith has her annual review tomorrow (8th January) and then as mentioned her scan on the 21st, so I hope to be able to update you all on the outcome next time when we have a bigger picture.

On a brighter note, we can’t thank you all enough for the gifts and cards we received over Christmas, and have enjoyed using them all, and still feel overwhelmed that people think about us all throughout the year. A huge thank you for all our lovely Christmas cards, but especially to Tony & Eileen Forder for the lovely photo card and to Kerry for Faith’s Christmas card with her name on it. Massive thank you’s for the lovely gifts we ALL received for Christmas, especially to the families who still sent to Alice and also to me which was an unexpected treat – Tony & Eileen Forder, Glad Shrubshall, Dawn Smith, Ellie Knott, Penny Berrill, Libby, Jenny, Tek, Viks, Laura, Kerry and a special thank you to Rikki Ross Esty & Iian for treating us all (the chocolates went down a treat).

We wish you all a very Happy New Year and hope it is peaceful, healthy and see your hopes and dreams come true. With much love until next time… keep smiling.

Update 18th December 2012

We went to see the consultant today expecting an additional antibiotic and told to be seen in Jan for MOT… but she’s hanging on by fingernails not to be admitted and if she does she will be in over the festive period. Her Doctor listened to her chest and said she would normally think that’s not too bad, but knowing how many anti-bugs she has had, it’s rubbish! Her blood results show she is severely anemic and her liver is not functioning at all well and they are very concerned about it, so we’re going for a liver scan as soon as possible and they’ll retest the blood to get a full picture. She also has a cracked rib and they now think she has lost too much weight, even though we have followed the dietitians advice (she put a bit on due to medication and steroids) and she is now on a BIG dose of steroids and has more antibiotics to start as soon as this course has finished, unless she gets any worse and has to go in. She is also not allowed to go back to school and Faith got upset about this. All in all, a bit of a shock, and not at all what we wanted to hear or were expecting, but we will fight and kick it’s butt!

Update 2nd December 2012

Faith has had a tough month, she was taking part in PE at school and turned badly and rupture her knee causing a week of swelling and pain, and just as we got that sorted, she was struck down with a very bad muscle spasm in her back. We had just been celebrating a friends little boys birthday when Faith had shooting pains in her back, resulting in her being unable to move, so after a great deal of wiggling we got into the house and after a big dose of painkillers she went to bed. By the following day every time Faith moved she was being sick, and after a visit to the doctors she was put on super strength painkillers but her sickness still continued and she was becoming dehydrated. Nothing helped her pain and eventually we ended up in A&E and got some different meds.Finally, after a week, she was back on her feet and (all be it slowly) she is now mobile and moving again.

She has been enjoying watching The X Factor and we are planning an X Factor Final get together with food and drinks with some friends.

We are planning the ‘putting up of the tree’ for the 4th December and the household is getting ready and excited to spend a happy family Christmas with our close family and New Year with my partner and his family.

We wish you all a very Happy Christmas and New Year. We cannot thank you all enough for all the smiles we have received this year and hope you all find time to enjoy the festive season. A special thanks to Glad and Libby for post, also Sarah, Natashja and Fiona for the post we get regularly. With thanks for the continued smiles and wishing you all a Merry Christmas from the 3 of us.

Update 24th November 2012

I just thought I would let you know Faith is not having a great time right now. She has a nasty sickness bug and her back has gone into a huge spasm. Due to the sickness it has gone from a small section on the left side to the whole of her lower back and is traveling upwards. She is in a lot of pain all the time and is on very strong meds which are not helping the sickness, which in turn causes more pain. We are also not sure how much pain relief is staying inside her. She is very sleepy as she can’t get comfy and can only sleep for short spells, so it’s a vicious circle. We are hoping this is not going to end up with a hospital admission, but she is becoming dehydrated and we are fighting a losing battle to get fluids in her.

Update 9th November 2012

October has been an odd month. First we would like to thank everyone for Alice’s birthday post and gifts. She had a great day and was very spoilt.

Faith has had a cough continually off and on and has had some very poorly days. She has had 4 weeks of antibiotics with the last course causing a very nasty reaction with her lips swelling and needed lots of antihistamine to reverse the swelling. She was then put back on lower meds and things are settled now although she does continue to cough.

We had a lovely long weekend break at Butlins for half term and this gave everyone a much needed break and time to recharge our batteries. The highlight of the week was meeting the lovely Olly Murs at his book signing. He had a good chat with the girls and we all had kisses from him. So lots of happy ladies went off to lunch and the day was ended in Portsmouth to see an amazing fireworks display set to music.

As ever, the post has bought smiles all round and a special thanks to Becci and Natasha, it was lovely to hear about Cornwall. Keep smiling and hope you are all making happy plans for Christmas.

As Alice is now 16, Post Pals post will be now be directly more towards Faith, but she has loved getting mail and appreciated every single piece. We’d like to say a very BIG thank you to everyone who has taken time to think of Alice. She has said it makes the tough times very much easier knowing complete

strangers are thinking of her and sharing their love with her. She has made some lovely friends on PP and will enjoy staying in touch with them.

Update 16th October 2012

We have had a steady return to school with Faith starting her GCSE’s this term and that has been great fun. It’s hard work but she’s loving it.

Alice would like to thank everyone for her cards and gifts for her birthday which was celebrated in style and a fab time was had by all.

Faith has now finally received some insoles for her shoes so that is helping with her walking and keeping her feet in an upright position. She also had her check up at CF Clinic and although she had a very nasty cough they were generally pleased with the level of fitness she is able to do and are very pleased she has started a weekly bike ride with her Granddad. Test results showed Faith had grown some nasty bugs so as she was already on antibiotics as a precaution she stayed on them. After the 2 weeks were up things looked good, but unfortunately 4 days after they finished she was knocked for six with another chest infection along with a very nasty ear infection and throat infection. She is now on very strong tablets and trying hard to avoid a stay in hospital, as we are due to go to Butlins for a long weekend at half term. She is very much looking forward to meeting Olly Murs at a book signing at our local Waterstones. They have gone out of their way to make it happen so as you can imagine I have 2 very excited girls (and mummy) – hopefully we will have better news next month but for now thank you so much for each and every smile – the girls really do appreciate them.

Update 11th September 2012

Well since our last update Faith has managed to break her thumb, resulting in a nice purple cast from her elbow to her finger tips on the first day of the summer holidays!!

Summer has been a whirlwind of trips and days out. Firstly the girls spent a few days seeing their Dad so I had a much appreciated break and we then had a lovely day in London with their Auntie and cousin for a girls day out and we went to the V&A museum taking in the ballgown display which was breathtaking. It was after the Olympics had started and we were very worried it would be so busy but to our surprise it was lovely and quiet, so in the afternoon we stopped off for a cake and coffee in Covent Garden and then had a lovely few hours watching the street entertainers. We then went for Pizza and made our way for the highlight and went to The Cambridge Theater and watched Matilda The Musical – one word from all was FAB. It was back home for a few lazy days walking the dog along the beach when we could drag ourselves away from the Olympics, and then the time as a family we had been waiting 7 years for came – we went to the Olympics!!! Faith’s doctor had recommended her to a charity called Dreams Come True and Faith’s dream was to go to the Olympics in London. We were on a train to London at 8.30am and after a couple of hours we arrived in the city and took in some sightseeing and a return to Covent Garden Market to get the girls some t-shirts for Team GB – we checked in to our hotel and made our way to Earls Court to see the quarterfinals of the men’s Volleyball, WOW it was everything we hoped for and more – exciting, fun, buzzing, loud and everywhere you looked there were happy smiling faces. It was a late finish and we traveled back to get some much needed sleep as we had a very early start as we had to be at the Stadium at 9am the next day! So after what seemed like no time at all we were eating a breakfast and made our way to Olympic Park. We had arranged to meet Gaynor (the lady who organised Faith’s LoveQuiltUK) who was a volunteer at the games – she gave us a quick tour of the park and we made our way into the stadium, it was magical and exciting. The noise was huge and we thought it couldn’t get any louder. We were wrong – TEAM GB came out and the cheer was out of this world. After a long day we went to the shop and got a few souvenirs and made our way back into London on The Javelin. We had a bite to eat and finally got back home at 10pm, tired but happy and when asked was it worth it both girls said YES without any doubt.

So a few more days rest and more sitting on the sofa watching the games come to a close and we went to get Faith’s broken thumb looked at and we were delighted when they said the cast could come off. So we went to Portsmouth to stay with my partner and a day at the Romsey Rapids was great fun and tired everyone out. The highlight of the week was going to Gun Wharf for a coffee with a very special lady – we went and met Glad who sends post to us and how lovely it was to introduce the girls to her and share some stories from the summer. We also fitted a trip to Chessington in and that was great fun.

We then all came home to Poole and had a few days ‘being on holiday at home’ and had a great time going to the beach and eating icecreams, having fish & chips at the seaside and generally enjoying our home town and surrounding areas.

We then spent our last full week in Blackpool having a good old fashioned fun holiday, we were going to be very busy and went to The Pleasure Beach, Madame Tussuards, shopping and The Tower – we even met the sugar-dandies from BGT at the tower. We went to Liverpool for a day and took a trip round Anfield looking at the stadium, and felt very humbled when we saw the Hillsborough Memorial. All in all it was a great summer and best of all no illnesses – obviously Faith’s joints took a bashing on holiday but as we mixed busy days with quiet days she was able to recover well and it seems to have worked as apart from being very tired and achy there was no serious backlash from it all.

Finally home and Faith and Alice had a few days longer off school than me so they spent a few days pottering at Grandma and Grandad’s house while I went back to work. The girls returned to school and Faith went in the new uniform and looked very smart.

So all in all a great summer of being busy and well and it was so different to last year where Faith was unwell and in and out of hospital. Faith has also received her new custom made inserts for her feet so hopefully walking will get a whole lot easier now.

Well, onto post we received and a HUGE thank you for all the lovely Olympic postcards, it has been lovely seeing how excited the girls got with different pictures and knowing we would be going. I did have a list of gifts and people but my PC crashed and lost the list, so I will say every single item of post has been greatly received and enjoyed and we say thank you very much to you all. A special thank you to Tony and Eileen though for Faith’s Chelsea DVD and also to Glad for the lovely Olympic gifts.

Keep smiling and thank you for making my lovely girls smile.

Update 19th June 2012

Well it’s been a while since I did an update so here goes… April saw Faith have a return of the dreaded arthritis – she had 2 big flare ups, but thankfully although they were both very painful and made life uncomfortable, they were both short lived. Faith has been working very hard with physio to keep her fitness up to top notch and it seems to be working. She also has had a couple of niggly chest infections but working hard with her nebuliser has kept the infections at bay and we have so far avoided hospital – Faith hasn’t been admitted since October!! We are hoping to keep this run going.

April also saw Easter and both girls were totally spoilt and we thank you all for you lovely gifts and cards and of course the mountain of chocolate they received and slowly ate throughout the following weeks. We also saw the birthdays arrive and we had a whirlwind of celebrations – Faith’s Grandad, cousins, my partners son, and Mum, all had birthdays and then finally it was Faiths. She was totally spoilt and loved every minute of her day and as ever Post Pals spoilt her rotten – I can’t thank you enough.

It seems a long time ago that my 14 year old was a tiny little bundle and at times I didn’t think she would still be here, so birthdays are always a bit extra special for her. This years treat was to go hydro zorbing and boy, did she have fun! It’s a big ball and they throw in a bucket of warm water and roll you down a hill – Faith and her best buddy had a fabulous time and looked like drowned rats when they came out.

May was a mixed month and we had a few scares with her chest again but with hard work we kept out of hospital and when the sun shined we loved it and made the most of it. Faith enjoyed spending her birthday money and did lots of clothes shopping – it’s funny how careful they are with their own money!

We had the pleasure of watching Alice preform on stage at the start of the month and WOW what a show and what a star she was. Faith and I helped out behind the scenes and we had a great time helping all the little ones change clothes and make sure they kept calm. Faith was very touched when she was called up on the last night to be given a gift for helping out. We also had a lovely day out in Brighton to watch/look at the Mini’s who had taken part in the London 2 Brighton mini run, what a fun day that was and lots of fun on the pier too.

May also saw a family wedding and it was lovely to all get dressed up and celebrate with everyone. The following day while Alice went to an after wedding BBQ, Faith and I went to the final game of the football season to see our beloved Chelsea and wish them well in the upcoming Champions League Match. A great day was had and we said a very sad farewell to one of Faith’s favourites, Didier Drogba, who confirmed later in the month he would be leaving. We then spent a tense week waiting for THE FINAL. We went up to Portsmouth to spend the weekend with my partner and after a nail-biting 90 minutes and even more tense 30 minutes extra time it was with a heavy heart we watched the PENALTIES. Faith, as ever, was confident and I do believe the whole of Portsmouth heard the cheers when we won. We won’t lie, we had tears of joy, but what a moment to watch her hero Frank Lampard lead the team out and win the game with Drogba kicking an amazing final ball for his Chelsea career. Needless to say, Faith was pretty worn out after that and it took its toll during the following days and she was totally run down, worn out and off colour. Again, she needed more antibiotics as it was another chest infection but she stayed home and bounced back very well.

June bought the long awaited Jubilee and Alice spent most of it revising for the first part of her GCSE exams. Faith, myself, my partner and his son, were treated to a day at Wembley to watch England play their friendly game before departing for The Euro’s. We had a fab day and were pleased with the win and then went back to Portsmouth to enjoy some more Jubilee fun. We then had my niece’s wedding and Faith and Alice both loved getting the glad rags on and partied hard all day. We chilled for the rest of the half term making sure both girls didn’t become unwell with the pressure of studying and partying. So I am happy to report Faith is still doing well and although she keeps getting little flare ups we haven’t had a major one in her joints for a while and we seem to be keeping her chest infections under control and still remain out of hospital and able to enjoy the Euro’s.

Life hasn’t been so kind to Alice who has studied hard and been doing really well at school, as she has sadly been diagnosed with polycystic ovaries which has come as a shock. She is being very grown up about it and although she is needing lots of cuddles she is still studying hard and trying to not let it upset her too much. So it’s a few trips to the hospital and doctors to get some things clear and then we can start on some hormone treatment to make her more comfortable, and we are very optimistic about it.

All that remains for me to say is some thank you’s and as ever if I have missed you out I can only apologise. A huge thank you for the girls lovely ‘Girls night in Box’ which contained such lovely treats to have while they watched the DVD’s but it did not have a name card with it so from the bottom of my heart I thank you – they loved it and it happens to have one of Faith favourite films in the box set ’50 first dates’. As ever, thank you to Tony and Eileen (Faith loves the DVD and is going to wear it out I’m sure!), Libby (too many to mention but the handbag is a huge hit), Glad (where do I start -you spoil us ALL so much, thank you), Becci Willets (we loved hearing about your holiday and are going to try and get to Cheddar ourselves soon), Dawn Smith (the bracelets are a huge hit and everyone loves them), Helen, Rissy, Mary & lola, Hannah Turner, Claire, Satcey, Sophie, Dottie (your adventures keep both girls smiling), and of course Post Pals themselves who continue to keep everyone smiling through good times and bad. Faith and Alice were very spoilt over Easter and enjoyed the lovely gifts and cards and not to mention the huge mountain of chocolate that they slowly ate over the following weeks. Faith was also extremely spoilt for her birthday and now has lots of lovely cake making/decorating books to help with her cupcakes and she is loving trying out new ideas – thank you so very much one and all. We can not thank you enough for continuing to send so many happy smiles to both the girls and in turn myself. The post most definitely keeps their spirits up and they appreciate every letter, card or gift they receive.May you all find some sunshine to enjoy over the next few weeks and we will catch up next month.

Update 8th April 2012

March has been a mixed month for us. Faith has had a return of her arthritis with a big flare up in her joints and also suffered a very nasty sickness bug that wiped out a whole week!! Her chest however has been ok and after a very slight infection her chest has cleared nicely, mainly with the aid of her nebs and at clinic her lung function had gone from 78% at very best to an impressive 95% so fingers crossed we can keep this up.

This month saw Alice go on holiday with friends for a few days for a well deserved break at Center Parcs in Longleat, giving Faith and Mummy some lovely quality time together.

A huge thank you for the girls books – both were delighted to receive them.

Days out this month have been few and far between but Faith was treated to an amazing night at Chelsea Football Club to see them play Benfica in the second leg – it was a nail biter and we were 3-1 down at the start and the game was end to end drama. After a show of talents and after extra time Chelsea went through to the quarter finals (and have since gone on to the semi’s). We were privileged to park in the players car park and after the game Faith met several players including Ashley Cole and Fernando Torres. It was a chilly evening but the lovely fleece blanket Tony and Eileen Forder sent Faith kept her snug and warm.

Our thanks go to everyone for post this month, especially Tony and Eileen, Glad, Libby, also Sarah, Becci, Kerry, Fiaona, Claire, Stacey, Hannah and Rissy & Mary.

As this is a little late we will thank you for the overwhelming amount of Easter goodies the girls received and they were truly spoiled. We have enjoyed the Easter holidays so far but have another week to chill, so hopefully the good health will continue.

Faith did take delivery of her super dooper new bed this week and it is an electronic bed that can raise the feet up to help with pain/swelling. It can also be put in a sitting position, which is great when she needs to chill out, but it helps no end when she is very stiff in the mornings and can raise herself up without waiting for me to help her up. It gives her so much more independence in the mornings as she can sit up, wriggle about, and get out of bed on her worst days without any help form me.

March also saw me (mum) celebrate yet another birthday and I have to thank the PP friends who made my day special with messages and cards too. The same as well for Mother’s Day – I can honestly say it was a lovely surprise to have post and I know now how special it makes the children feel so a huge thank you (especially to Glad).

March brought the sunshine and it has been lovely to walk the dog along the beach and see her run fast while we have walked at a leisurely pace. Fingers crossed the good weather continues.

Thank you for keeping the girls smiling and see you all next month.

Update 27th March 2012

Faith is having a rough time right now, she’s feeling very unwell with a nasty sickness bug that won’t leave and she has a lot of tummy pain as a result. She has possibly cracked a rib as she has had a bad cough over the weekend and her arthritis has come back and she is having a major flare up – we hoped it would be a minor one but it looks like it’s going to be a full blown relapse.

Update 1st March 2012

This month has flown by, the snow was just a dusting and both girls were disappointed in our small snow fall. We had a fun filled half term with the highlight being a concert to see Olly Murs for all 3 of us at our local arena. We all had a great time and the lack of voice the following day was a result of a good night had by all. Some shopping was also on the cards and we had a lovely trip to Portsmouth to see my other half and Gunwharf Quays is always a big hit.

Faith was able to send a smile to one of her regular pals this month (an adult) as he had a birthday and she was delighted that he was made to smile and how much happiness it bought him.

Health wise we have had a very good month, a chest infection has been kept at bay we hope with the introduction of a nebuliser to be administered 2 times a day along with her physio Faith isn’t keen but it helps loads and she gets on with it.

Faith has finally had her long awaited toe surgery to remove her nail that had become very badly infected and ingrown. This was very painful for her and hasn’t helped with her walking – added with the distortion of her foot with arthritis, it had to come out. I’m pleased to report she was very brave and the toe is now fully sorted and over the next few months the bed will heal and the dressings can come off. Right now she looks like she has a boxing glove on her toe though, so she is in flip-flops – thank goodness for the warmer days. This has left her exhausted and the pain has been a lot more than she anticipated (Faith thinks everything will be just a bit sore) and she has been snoozing all day. This has had a knock on effect to her chest and she is showing signs of an infection, but the antibiotics are already on board and fingers crossed this will sort itself without a hospital admission.

Thanks this month to Fiona, Becci, Glad, Kerry and Sarah for their cards. It is always lovely to read letters from pals to hear about what they have been up to and the girls love hearing from everyone, but our regulars especially, as they can’t wait to hear how they have got on with gardening or shopping or a special treat they have been looking forward to. Thank you for the girls’ monthly project – they have both enjoyed being fashion designers. A massive warm thank you to Tony and Eileen for Faith’s fleece Chelsea blanket, she loves it and snuggles with it all the time.

Update 4th February 2012

Faith had a great start to the New Year. We had a great appointment with her joint specialist and was told for the first time in 4 years that she doesn’t have any active (new) arthritis and it meant we could really focus on some intensive physio to rebuild the muscles in her joints that have been unused for some time. Over the month and the onset of the cold weather her fingers have shown signs of some arthritis returning but we are working very hard to keep this at a minimum and can only hope it stays at bay.

Faith also had her Annual review and again we had great news that she has not had any major set backs this year. They are concerned at the amount of admissions she has had with symptoms of Aspergillus and are treating as such to hopefully avoid more admissions into hospital, so it means more physio and Nebs at home, but if it keeps us home it’s worth the extra work. They are happy to continue with the current regime of medication and are very happy with how Faith can bounce back from illness and how she deals with it all.

During this time we had a role reversal with Alice being rushed into hospital for 6 days having an ovarian cyst that eventually burst causing huge distress and pain. However she coped well and it was very reassuring knowing the staff on the ward and Faith got to see the other side of being in hospital, mainly being spoiled by Grandma and Granddad and also not knowing what’s going on. Alice also got to see it’s not all fun and games when you’re poorly.

All in all not a bad month – apart from the little blip with Alice – and we are looking forward to this trend continuing. We have also discovered that with Faith’s passion for baking cakes we can incorporate a lot of physio with all the mixing and especially the pipping of the icing. It works her fingers really hard and best of all, we get to have yummy cakes and treat our friends when they visit. She’s getting very good at it and has been asked to make the cakes for her Grandma’s upcoming birthday.

Faith is in the middle of choosing her GCSE options for September so I’m feeling a little like where has my baby gone! But so far every teacher we see says they would love her in their subject, so it’s not making the choices any easier, but she has been told P.E. is possible so I have a very happy girl. With all her pain management issues we were a little worried she wouldn’t be able to keep up, but they are able to adapt the course slightly for her.

We are hoping for a little snow whilst we write this update, and the girls are hoping for a lot… I’m well stocked with carrots in case we get enough to build a snowman!!

All that is left to say is thank you all for your love and support as ever. Thanks to Fiona, Sarah, Glad and Libby for their cards and to Glad for the lovely bath bombs that came at a perfect time with Alice in hospital. HUGE apologies if I have forgotten to thank you personally for post, but they are all very much appreciated and always bring lovely smiles.

May you all have a good month and God bless and keep well and big smiles from us!

Update 17th January 2012

Sorry for the delay, this is due to me having an operation and making a slow but steady recovery.

November saw us in hospital with Faith’s chest infection and we escaped in time for a lovely family wedding in Leeds. It was lovely to see both Alice and Faith all dressed up and looking radiant. The trip tired Faith but she loved the time away catching up with family we haven’t seen for a while.

Faith continued to be in pain with her joints but this eased as the month went on. She saw the foot doctor who has braced her foot, to give extra support when walking, and it was also finally agreed that they will operate on her toe to remove the ingrown toe nail that she has had for the past 18 months. It’s a little thing to you and me, but it’s another problem that causes infection, pain, and discomfort to Faith.

Faith has sadly had to give up Kickboxing as the pain on her joints are very damaging and she is finding it hard to cope after sessions – it was a tough choice but health always has to come first.

The Post Pals balloons came at a time we needed a smile (while I was recovering from my op) and they did the trick and both girls loved them. To hear two teenagers squeal with delight as they floated out of the box was wonderful.

In December the family health continued to improve and for the first time in a long while we were all healthy and happy for the Christmas run up. Faith had her pre M.O.T appointment and all was looking good for the big appointment in January.

The girls had such an amazing amount of post for Christmas. As ever, thank you to everyone who has sent post, but especially Sarah, Tony & Eileen, Fiona, Glad and Libby. The elves spoilt both girls with make-up, nail varnishes, smellies, a Cheryl Cole calendar, a lovely signed photo of a Chelsea player, a Chelsea team print with Faith’s name on the shirts, stationary, hair bits and Alice even had a lovely dress. Thank you all so very much. We had a very relaxed Christmas having dinner with the family at the local pub, meaning no cooking or shopping for anyone, and also no dishes to clean afterwards.

We cannot thank you all enough for the love and support you have shown us during 2011; it has really bought some HUGE smiles to my girls’ faces and also to mine too. Thank you. We are looking forward to a happier and healthier 2012. Thank you all and thank you for the smiles. Lots of love and best wishes to you all.

Update 2nd November 2011

Faith has had a really bad month. Her general health deteriorated and she devolved a sinus infection that saw her face swell up and her pain went out of control. She was put on yet another course of antibiotics and things just didn’t shift. Her infection went to her chest and she was admitted to hospital for IV antibiotics, rest, and intensive physio input. Whilst in hospital Faith went onto a nebuliser to help clear the gunk from her lungs – this was very successful, but left Faith extremely tired. After 5 days of constant sleep, physio and medication, she turned the corner and was able to come home in time to go to a family wedding this weekend. Her low point wasn’t helped by her beloved Chelsea losing 3-5 to Arsenal but she is looking forward to going to The Bridge to see them play at the end of November, and is even more excited as her Granddad is taking her.

Whilst in hospital we had a routine appointment for her podiatrist and they have fitted her with a brace to re-align her leg bone as it is twisted, this combined with her arthritis makes her ankles very painful so this should help and give some pain relief. We go back in mid November to get some feedback and to see about having some inserts for her shoes.

Faith is still very tired and needs time to get over such a nasty and prolonged period of being unwell but is getting there with baby steps.

Alice was lucky to be away on a little holiday with one of her friends while Faith was in hospital so that made life much easier, so she was having fun shopping in Bristol and seeing the sights.

It has been lovely to get to know a bit more about our regular writers and we all love hearing what you have been up to. We would like to thank Post Pals for the lovely Halloween bags the girls received as they were great fun and the girls put them to good use for trick or treating. Even though Faith was in hospital she didn’t miss out as the local radio station Heart FM came round and gave out sweets to all the children on the ward.

We look forward to sharing Faith’s continued recovery next month but wish you all well and hope you all have fun with Fireworks night. Keep safe and thank you for the smiles.

Thank you to all who have sent post, especially Glad and Fiona, it creates big smiles all round. Faith was very impressed with Fiona’s new found computer skills. Special thanks for all the lovely cards and gifts Alice received for her birthday too.

Thank you for you lovely support over a tough month while Faith has been unwell and in hospital.

Update 9th October 2011

September saw a return to school, both for the girls and me, which has come as a shock to the system! We had just got used to going back to school as I set off to Scotland for a weekend and the girls stayed with Grandma and Granddad as I took on the huge challenge of climbing BEN NEVIS to raise money for the CF Trust. It was a lovely moment to be able to phone Faith from the top of the mountain to tell her I had made it. She was very proud of me as were the rest of the family.

Faith isn’t too keen on her new tutor but I think this is partly due to the fact she has been feeling poorly. Her chest has been very sore and for a while they thought she may have pleurisy, so treated accordingly. Also, her joints have been very stiff and sore, and mid month we went to the CF clinic and had a really good overall. The doctor is slightly worried about her chest and is keeping a close eye on her. She also had a review for her joints and it was decided that she should have more steroid injection to see if this could relive the pain and improve movement. We had these done on Wednesday but sadly they have only helped very slightly in her left ankle and no improvement in her wrists. She had both wrists and both ankles injected.

Also, by the time I have written this Alice has celebrated her birthday and we thank you for all her lovely cards, especially to Libby and also Glad who shared her birthday too. We had a surprise party at home for Alice and she loved it, and the following day I took her to London to see Buckingham Palace and the royal wedding dress and we had a fabulous day in the glorious sunshine.

I hope to bring better news next month and Faith’s chest is better by then. Let’s hope you all keep the winter bugs away and stay safe.

As ever, thank you to every one who has sent smiles to the girls and a special thank you to Tony and Eileen. Thanks to Laura for the lovely CD too.

Update 15th September 2011

Faith has had a good month, the highlight being the holiday Post Pals organised for us. We had lots of fun in Berwick upon Tweed and the girls both loved doing water sports, horse riding and rock climbing. We even went to Edinburgh (a first for us as we have never been over the border) and we looked around the Royal Yacht Britannia which Alice loved as she is hugely into the royal family at the moment.

Faith has suffered with swollen joints after the holidays but this is to be expected after a busy week. We will see if they continue to trouble her after a week or so back to school.

I have been to Scotland again climbing Ben Nevis for CFTrust and Faith and Alice are both very proud of my achievement. It took 9 hours but was worth all the pain in the 70mph winds, rain sleet and hail.

We hope you are all as well as you can be and keep smiling.

Can we say a special thank you to Glad this month who always sends the loveliest of smiles. A huge thank you to Post Pals for the girls’ gifts too as they have enjoyed all the crafty things and the colouring pencils were fab to return to school with. Also, thank you for both stationary sets which made going back to school a happier time. A huge thank you for all post and every smile we received this month.

Update 3rd August 2011

This has been a very odd month, it started with Faith being well and we had a massive Heath fire and houses and up to 2 streets away were evicted and this left loads of thick heavy smoke in the air. This caused Faith to start coughing and developed into a nasty chest infection. After 3 weeks of fighting the infection at home, Faith was admitted into hospital and had an intensive course of IV antibiotics. She stayed for 11 days and we came home very tired and worn out. Faith returned to school part time after a week resting at home and met some new friends at school who will be joining her year group in September. Faith also said farewell to her Form Tutor so is looking forward to having a new Form Tutor next year. The first Saturday after Faith broke up from school she took her Kickboxing belt grading and was very nervous as she had missed so many training sessions with being unwell. However she passed and was just half a point away from a credit. She is very proud of herself.

Faith’s joints have been up and down with her ankles swelling up and down but they seem to have settled now. However after a routine physio appointment it seems her wrists have lost some movement and they are watching that very closely, hopefully with the summer holidays to rest them and some more intensive physio they will improve.

As before both girls have been very spoilt with their post which has created loads of smiles and we thank everyone. The best by far though has to be the fact we have been given the opportunity to have a week long holiday in Northumberland in August. We are so excited and cannot wait, we are taking my Mum with us as Paul has to work and she helps out a lot. We will look forward to sharing our holiday tales with you soon.

A special thank you to Tony and Eileen from Faith and to Libby from Alice. Faith loved receiving her Chelsea pillow and Alice’s favourite was her lovely mask from Libby. Continued thanks to everyone for the smiles, especially while Faith was in hospital.

Keep well and thanks for the smiles 🙂

Update 5th May 2011

Faith had a mixed month in April. Her joints have given great cause for concern becoming very stiff and sore and caused a great deal of discomfort when mobilising. After a bit of juggling of medication she is now a lot better in her joints and is able to move more freely.Her review at hospital was very positive and we are now to continue with the new regime and hopefully continue to see an improvement.

At the beginning of the month Faith was generally under the weather but we couldn’t put our finger on it and after a week off school, on the first day of the Easter break, Faith had a very red and unusual looking rash all over her face, so a trip to the GP told us she had been suffering Slap Cheek Fever! Normally a fairly mild aggravation to children but with all Faith’s complications it had knocked her off her feet.

The second week of the Easter break we headed to Devon for a family holiday in Ilfracombe and were blessed with glorious sunshine and no rain. The girls, my partner, his daughter and I, enjoyed long days on the beach body boarding and Faith enjoyed the simple pleasure of flying a kite and spent hours flying with Paul.

We celebrated Faith’s 13th birthday after our return, but sadly since we’ve come home Faith has been back in hospital with suspected pancreatius, and although this was not the case, the hospital discovered she had swollen Lymph nodes. So after a week of serious pain and another week off school, she was able to come home and enjoy the Royal Wedding.

Faith has finally gone back to school this week and although being tired she is in good spirits and is returning to kickboxing training this week as she is taking her 1st grading at the end of the May (all being well).

I cannot possibly mention everyone who has sent the girls post, cards, Easter gifts, birthday presents, and happy smiley wishes for both Faith and Alice, as they have had so much, all extremely lovely and all have put a huge smile on their faces. Alice especially loved receiving her book and has already started reading it, as has Faith. All the make-up and toiletries have made for two very nice smelling girls and I now am able to get my nails painted as well with new nail varnishes. I cannot say thank you enough. But each and every one of you has bought happiness to our little family.

Hopefully next month will not be so eventful but until then God Bless and thank you for the smiles.

Story written 2011

Emily was diagnosed with Cystic Fibrosis in 2007 aged 8. This was a shock to us and as a family as we knew nothing about this disease then. Emily has to have physio twice a day and she takes up to thirty to forty tablets a day plus 5 nebulisers a day to help her lungs. Emily also has CF related liver disease and has to have a lot of scans to keep a check on her liver.

Emily has a portacath fitted now and this makes her IV’s less traumatic for as she hated having long lines so much. We can do home IV’s for Emily when she is well enough so it is fantastic for her as she can carry on at school and do everything she likes as normal.

Emily also has high calorie drinks everyday to keep her weight up and I must say she loves them but only chocolate flavour Calshake!

Emily has 2 older brothers and 3 older sisters. Danielle is the only sister who is still at home. All love her very much and encourage her so much. It has been hard for us as a family with this diagnosis, but as a family we will get there and battle this with Emily.

Update 28th March 2015

To everyone at Post Pals, as I am now 16 I feel that it is time for me to move on so that another new Pal can join and receive some lovely post like I have throughout the past few years.

I just want to thank everyone for the letters, cards and amazing gifts, that I have been sent over the years. Me and my family have made some life long friends through Post Pals who we would love to stay in contact with!

You all do an amazing job and it puts lots of happy smiles on us kids (and our family’s) at the darkest of times. Thank you once again for everything!

Lots of love, Emily B and family xx

Update 16th May 2014

Thank you to everyone who has taken the time to send letters, notes and gifts to Emily. It has meant a lot to her (and to us as a family) to think people out there do care. It’s been a tough few months for Emily so I’m sorry we haven’t been keeping you up to date with everything recently, but hopefully we will be back to normal with Emily’s posts soon. Thanks again.

Update 28th September 2013

Emily hasn’t been too well for the past 3 weeks since we came back off holiday. She’s had two lots of oral antibiotics to try to clear a nasty cough but it has done nothing and all she’s wanted to do is sleep.

She had clinic a few days ago with her consultant and Prof David who comes every few months to our clinic, there was also CF nurses and lots of other people there – just a busy clinic. Emily’s consultant was going to change her oral antibiotics to see if that helped her for now but the Prof said NO he said she was better to start IV’s. Emily wasn’t too happy about this as it has only been 7 weeks since she last had her IV’s but that’s the plan. She starts them on Tuesday 1st October and finishes them on her birthday 15th October – what a birthday present!

Thank you to Claire for her parcel, she received it today and she will take this into hospital with her on tuesday! Thank you to everyone who is taking the time to make my lovely daughter smile!

Update 31st July 2013

Thank you Post Pals for being there this month, especially for Emily and Faith, after they lost their lovely friend Lizzie. You have been amazing, as always!

Thank you for all the lovely letters Emily received this month, they really did put a smile on her face! Everyone has been so kind, it really does mean a lot to Emily and to us too! Thank you.

Update 5th May 2013

Emily has been through a lot this month with her Iv’s and also having her tonsils out. She has been great though and never complained at all. Her operation went really well to take her tonsils out and she was so brave – we even got pictures from her surgeon of her tonsils, yuck! She has been in a lot of pain trying to eat though and she couldn’t go out or go to school for 2 weeks so she did get very bored. She is so glad she’s had it all done and is back at school now though and has her lovely smile back on her face.

Thank you Post Pals for the lovely parcel you sent Emily, it really cheered her up while she was recovering from having her tonsils out.

Update 17th April 2013

Emily’s has had her tonsils removed, she has been in a lot of pain and is also on her IV antibiotics, so she’s really not having such a great time at the minute. Emily’s not allowed out for two weeks in case of infection.

Update 4th April 2013

Emily hasn’t been doing very well at all, she’s had a lot of chest infections and tonsillitis so has missed a lot of school the past month as she has been so low. Today she went into hospital to start her IV antibiotics and also have a Glucose Tolerance test to check she doesn’t have diabetes. Then after her first week of IV’s she is having her tonsils removed (on the 11th) then after that continue her last week on IV’s… so please keep Emily is your thoughts and maybe some happy post would be lovely to cheer her up. Thank you!

Update 30th November 2012

Emily’s just getting back on her feet after breaking her ankle – the worst thing ever for her as she couldn’t even go into school because she couldn’t weight bare at all, so it was a very long few months. She is now back to dance classes and back to cheerleading so we have a happy Emily again!

At the minute she is having a bad time though with tonsillitis yet again, I think this is the 7h or 8th time now, but this time she is being referred to E.N.T. so let’s hope they get her in and take them out as it stops her having her nebs etc.

Emily is due her IV’s over Christmas and new year, so we will be glad to see the back of this year, that’s for sure!

Thank you to Alex, Natashja and Kerri for the lovely cards and parcels you have sent Emily this month, she has loved every one of them!

Update 8th November 2012

Emily is off school again and on another 2 weeks of oral antibiotics as she’s just been so run down. We think she’s been trying so hard after breaking her ankle which isn’t right yet – she’s still walking with a limp and has only been back in school now a few weeks and that’s been since summer holidays, so she’s not had a great time at all.

Emily loves receiving post! Thank you to Alex who sends her post, she’s such an amazing woman!

Update 23rd June 2012

Emily has been doing pretty well recently, but has had a few bouts of Tonsillitis so we’re waiting to see what her consultant is going to do about this. We seem to be going back and forth for antibiotics and she’s on her IV’s right now as she has a bout of it again. We are all really happy with her lung function and everything else though, so that’s all great!

She’s been training lots with her cheerleading squad for a few competitions that are coming up soon and she even does all this while she’s on her IV’s, nothing stops her at all. We do her IV’s at home now so she can carry on doing all her activities including her dancing. Emily’s just so active and loves to be like this while she feels well enough and its great for us to see too!

She’s doing so well in school and is going to Year 8 camp soon so that’s going to be great fun and an experience for Emily.

Emily had a gift from Post Pals that was a monkey called Dave – we did have a laugh with him as Emily’s Dad is called Dave!

Update 9th April 2012

Emily’s Iv’s didn’t go too well this time, it was a nightmare from the start as they didn’t have any beds to admit her and she had been unwell for over a week. Her specialist nurse and consultant wanted Emily to start her IV’s as soon as possible but we kept being told there were no beds. In the end Emily’s consultant had us bring Emily into hospital for a few hours to have her gripper put in to start IV’s then she could go home after a few hours. However this never happens as they like to keep an eye on her over night to make sure everything is ok and she gets to see physio etc, but with this bed situation Emily’s consultant didn’t want her to wait any longer as she wasn’t 100%! Well, IV’s started and we got home, but that night Emily started complaining of pains in her port site, so we could only give her some painkillers and make her comfortable until the morning when we then rang the hospital to tell them. We were told not to worry and someone would get back to us. So we waited and the pains didn’t go away… so we called again, but still nothing. We had to just keep giving pain relief to Emily and after 2/3 days we spoke to her specialist nurse and explained what was going on and she contacted the consultant. We had to take Emily up to hospital and they just had a look and made sure it was flushing ok etc but we had already said that it was. The pains never went away and Emily was so unhappy, she didn’t want to do anything and days were passing by and we just felt so useless. Then we had another bad night with Emily up all night so we’d had enough and called them again in the morning. They had us go back again and this time they X-rayed her port site and also put a dye through to make sure there were no blockages. As we had told them before though, her port had been flushing and was drawing back fine so we didn’t think it was a blockage, but it was best to check it out, as we were baffled with Emily’s pains. A few more days passed and Emily couldn’t cope any longer so we went back and they decided to change the gripper and tried putting another in but that failed and it bent going in. By this time Emily was hysterical and wouldn’t let them near her again (this was day 9 of her IV’s so she had put up with enough really). We saw the doctor on duty and he said it looked like the antibiotic had irritated her vein which caused the pain. This has never happened before to Emily and we really hope it doesn’t happen again either. The doctor had to put Emily on some oral antibiotics to cover the rest of her IV’s as she hadn’t finished the course! It took almost a week for the pains to go after all that but it was so good to see Emily back to normal and having her lovely smile on her face again!

Thank you for all of Emily’s post. Emily has had some lovely mail from Alex Stiles Welch, she has boosted up Emily’s mail so much recently, it’s so lovely. You all do such amazing jobs to bring smiles to our kids, we can’t thank you enough. Thank you all very much!

Update 29th February 2012

We had an appointment to see Emily’s liver specialist in Manchester a few weeks ago. We have always known that her spleen was enlarged because of her liver disease, but today we found out that her platelets are dropping because of her spleen and if this carries they have no option but to remove Emily’s spleen. We are hoping that this takes time and things slow down as they couldn’t put a time on how long this could take etc, so at the minute they will take regular blood tests when Emily goes into hospital for her IV’s. Right now all we can do is hope her count stays where it is at now… that was 99, so fingers crossed!

Emily now attends a dance school and does Tap, Ballet and Contemporary. She had her first ballet panto last weekend and made us very proud.

Update 4th February 2012

Emily’s not been too bad this month. She’s had a lot of hospital visits and different tests being done this month, GTT test, liver scan, x-rays, lung function. We just hate waiting on results.

She’s been doing well in school and had her school report at the end of the month. We were really pleased with her straight A’s and 2 B’s in effort. Well, we can’t ask for anymore than that from her and we’re so pleased for her. We just hope she can keep it up and maybe have a few months break so she can stay well to stay in school more.

Update 11th January 2012

Emily had a bad run up to Christmas as she just had no energy and was coughing constantly. We took her up to hospital one night as she couldn’t breathe properly. Her chest was tight and they put her on some oral antibiotics for 2 weeks but that didn’t really do much to help. Emily also had a cheerleading competition coming up and she was determined she was going do this. We spoke to her consultant and he is all for Emily doing her activities, so he said she could go ahead with this competition and then they would admit her early to start her iv’s. Emily did so well at her competition and her team came home with 15 trophies, so she was very happy. Emily then went into hospital to start her iv’s and once they started to work we all had a lovely Christmas and New Year.

Update 2nd November 2011

Emily has been off school and under the weather after having her cervical cancer jab a few days ago and then yesterday her flu jab too. These have made her feel unwell so she’s been busy doing her Christmas cards for Post Pals.

Emily loved all her cards she received for her 13th birthday and it made it even more special for her, so thank you all again. She also loved her Halloween gift pack that she got in the post, it was really lovely.

Update 10th October 2011

Emily hasn’t been too well again this week so we had another visit to hospital. She has a viral throat infection and was given some oral antibiotics and spray for her sore throat but her chest was clear which was good news. We’re so pleased about that as it is Emily’s birthday on Saturday and she is having a massive party with all her friends and a limo with her close friends, so I’m sure she will be back to herself by then and have loads of fun. She is very excited about it all now!

Update 4th October 2011

We’re not having a good time at the minute with Emily as she’s been off colour quite a lot and is now on more oral antibiotics. It is not that long since she finished her iv’s either so she seems to be at home a lot at the moment.

Update 24th March 2011

Emily is off school ill again at the moment. We took her to our hospital to be checked out and she has an ear and throat infection which is making it hard for her to breathe properly. The post she has been getting has made her smile though so thank you all.

Update 10th March 2011

I would like to say a big thank you to Nichola, Jon & Daniel W, for the beautiful card Emily-Jo received today, it’s just what she needed as she has been off school unwell the past few days and she just finished her iv’s too so she’s just resting now and getting better.