Matty W

14 June 2012

Matty is on the “Moved On” page as he is doing really well, and his family are following their dream of moving abroad, and are now living in France.

Story written 2004

Matthew was diagnosed with AML in June 2003, he had a bone marrow transplant in September 2003,which was donated by his sister Emma.

We spent 5 months staying in Bristol Children’s hospital and were grateful of the support given by CLIC house. He also needed surgery after fungal infection damaged the palate of his mouth. This problem will be corrected at a later date.

Matt has now been diagnosed with the Bronchiolitis obliterans organizing pneumonia (BOOP), which relates to the graft-Versus-Host disease in the lungs. He’s doing well and still needs to go to the hospital for treatment and his reaction to the transplant is continually being monitored.

Update December 2005

Matty continues to do well, and is enjoying his life in France (as is the rest of his family), he his last scans were clear, his hormone tests show improvement so his Hydrocortisone might be reduced, best of all Matty and Emma are just enjoying being kids.

Update 15th February 2005

Matty’s surgery went well; he went home the same day.

It is hoped this is now the end of his very long journal in his battle against cancer. Matty and his family are moving to France this week so will no longer be receiving mail from Post Pals. We wish his family all the best, and a very happy life in France.

Update 1st February 2005

Matty is not due back to Clinic until MAY! Reaching 3 month clinic appointments is a huge milestone, which everyone is very happy about. They are confident his GVHD has been and gone! Matty needs to stay on a maintenance level of hydrocortisone as his Adrenal Gland tests show little production of national steroid-this is probably linked with the problems Matty had with his Sodium lever at the beginning of treatment.

Matty had his surgery to repair the hole in his mouth, it was hoped that this is the end of his long journal with his health, how ever it didn’t work so poor Matty is having more surgery on Friday, they will use stronger stitches- if it doesn’t work then he will still have to wear his plate and have it operated on in about a years time. We will keep our fingers crossed it works.

On a sadder note, Matty’s good friend Dave passed away, he is understandably upset at losing another friend.

Update 31st December 2004

Matty is still doing well, and had a good but quiet family Christmas. He is due to have CT scans this week. Sadly a friend he made while in hospital is very ill, Matty is understandably upset to be loosing another friend, so I’m sure a little tlc would be nice.

Update 8th December 2004

Matt is now back at school after his op and is doing well.

A lot has happened this week;

Tuesday – Meeting with the Endocrinologist from Bristol. Well, it seems that the test results showed that Matt’s Adrenal Gland is not producing ANY Cortisone! So now they are reducing the Hydrocortison, which they seem optimistic that will KICK start the gland again?

Wednesday – Clinic- As per usual Matt wouldn’t bleed! After three attempts and by this time Matt was Tackacardic and sweating! It was decided that we should come back to the ward on Friday for a re-try! The meeting went well, and the consultant is pleased with Matt’s progress.

Friday – Meeting with the Oral Surgeon, he is confident that he can fit Matt in for Corrective Surgery after Christmas! It will involve – wait for it… cutting the inside of the roof of Matt’s mouth and pull the tissue across and then… cutting a semi-circle around the roof and with a cut up the middle and pulling it across the hole!

Matt is fine about all this surgery talk and can’t wait to get rid of the mouth plate that he has had to wear for the last 16months!!! You know what they say “No Pain, No Gain”.

Update 16th November 2004

Matt had to go into hospital on Thursday to be circumcised, poor little chap, as if he hasn’t been through enough, but past treatment has caused it! He was let home the same day, although in pain is recovering well. He will be off school for 10 days.

Update 5th November 2004

ll, the meeting with the consultant went really well. Our appointment was at 1.30pm but as usual we didn’t see him until 3.20pm! This is normal though!

We were told that Matt’s cells have done the job they were meant to do.
They have conquered the BOOP (GVHD)! Also Dr Goulden was positive that the cells have also beaten the Leukaemia!! Matt was jumping with Joy!!


As to the medication, he will stop taking the Cyclosporin (anti-rejection drug) on the 17th November. We have to watch Matt, we don’t want the BOOP to return.

The Voriconozole will be stopped soon after and the Aciclovir will be stopped in the New Year as there is a great risk that Matt will develop shingles! Plus he might need hospitalisation with I.V’s.

Matt had his Endocrinology Tests on Monday, after having to have a second canula inserted as the first blocked. The results showed that the Adrenal Gland (gland which produces the bodies own Corstisone) isn’t functioning properly. They found traces of Calcium in the Gland and this means that Matt will need to be on Hydrocortisone permanently. He said “it’s better to stay on it than to stop it”.

They are going to re-run the tests to confirm this information. The Consultant thinks this stems from when Matt was first diagnosed, he had SIADH (sodium deficiency).

Matt is now down to monthly blood tests when he goes to the Clinic and we see Dr N Goulden (Consultant from Bristol) early February.

Matt has so much energy he is certainly getting back to his former self. He is swimming every weekend and now he is joining his old Gym Club.

Matt is due to see the Oral Surgeon on the 3rd December. Matt has been seen by a specialist for the Phimosis (Balonitis). It may be that Matt needs surgery (down below) which will hopefully be done before Christmas.

Update 26th October 2004

Mat is still doing well. Endocrinology tests on 01/11/04 and seeing Consultant from Bristol on 03/11/04.

We are seeing Moved On Pal Jamie on Tuesday and Pal Nicole.

Also on Wednesday we are catching up with Dave from Plymouth who we met in Bristol. Dave has invited Matt to go to the Marines Base with him!

All that UNIFORM!

Matt has just received a letter from Make A Wish and they are granting him his second wish of Meeting Robbie Williams!!

His first wish was for a Tropical Family Holiday, but their insurance company declined Matt’s Application?

He was gutted but R.W is certainly his Favourite!

Update 8th October 2004

Some great news for Matty; he no longer has to go to the hospital for weekly blood tests!! They will now be done once every 2 weeks at home by a CLIC nurse.

September the 24th saw the 1 year anniversary of Matty’s transplant. The consultant had told them if Matty got to 6 months they would be happy, if Matty got to 1 year, they would be optimistic, so it’s a huge landmark for them. The family celebrated by going bowling and having a take-away from Asda as that’s what Matty and Emma wanted to do.

They are waiting for an appointment to find out when Matty will have an operation to repair the hole in his palate which was caused by the Aspergillus, and also to see an Endocrinologist to check his adrenal status.

Matty’s mum says he is living life to the full at the moment, and enjoying trying to get back to a “normal” way of life, he is currently enjoying school, playing football, and started Cubs.

A photo of his trip to RAF St Mawgan, organised by Post Pals in May.

Update September 2004

Matty has recovered well from his 2 and half hour surgery in France to remove his Hickman line (other wise known as Mr Wiggly). His CT scans showed no change (which is good), and the ENT department no longer need to see him as they feel the Aspegillus is no longer active in his sinuses but they are waiting to hear from the ENT surgeon as to when they are going to repair the hole in his mouth. His steroids are being reduced, and he will soon be having his childhood vaccinations.

The past 2 weeks they have had lovely weather in Cornwall, so Matty and his sister Emma enjoyed breakfast on the beach every day, and lots of time spent swimming and surfing in the sea every day.

This week Matty and Emma returned to school, they are both happy to be back, we wish Matty the best for a far better school year than last, also for his C2C ride with his family in aid of the Anthony Nolan Trust.

Update August 2004

Matt’s CT scan showed no different to the last!

Matt had his Lumen Line out in Limoges Hospital whilst on holiday!

We have a Consultants meeting on the 01 September, we should find out when they are planning to stop the dreaded Prednisolone and an ENT review on the 02 September, hopefully we will know when they will repair the hole in the Palate?

Matt is doing really well and is looking forward to going into Year 5 in September.

Thanks to all the team at PostPals and we hope that Kat is making an improvement.

Matty couldn’t even have a holiday away from hospital it seems. He and his family went to France, and he was admitted to Limoges Hospital on with a bad line infection which they then had to remove (it’s been in for 14 months).

And then the Post Pals team received this message:

Hi From Windy France!
Thanks for Matt and Emma’s cards we received them today.
Matt had his cannula out today and no more trips to Limoges Hospital as the antibiotics have stopped!
He is like a different boy now he doesn’t have the central line, but what a way to get it out!! 5 days in a foreign hospital.
The staff and Drs were brilliant.
Back home on Tuesday, then more hospital trips to fill them in on what Matt’s been up to!
Love to you all

Update July 2004

Another Friday night was spent in hospital! Matt was putting his bike away in the garage and went to shut the door, but he couldn’t reach so he pulled the side strut of the door which then scissored his left little finger! They had to put Matt under with a GA! On doing this they found that he had damaged the Tendon! So they had to cut down both sides of the finger and repair it. He was down in emergency surgery for two and half hours!!

He has now had the plaster and stitches removed and is getting on well with the splint, back at school and is doing his work on a computer as he is left handed!

Update June 2004

Matt’s CT scan showed some questionable areas, and he is back on the steroids as mentioned before. He has so much more energy!!!

Matt saw the ENT guy again Monday, he looked up his nose with a microscope eeeakkkk! But he was pleased with what he saw, as from the scan they thought Matt needed his sinuses flushed as he had sinusitis, which evolved having a General Anaesthetic. The consultant wasn’t sure if the guy who puts them under would do it, because of the steroids that he is on and also the GVHD in the lungs. But the nasal passage looks better than before so we don’t need to see him for 6 weeks!!!

His counts are good, a little high but that’s down to the steroids.

A trip was arranged to visit RAF St Mawgan at the beginning of June, we had a tour of the School of Combat, Tour of a Helicopter, lunch in the Officers Mess, and visited the Pilots of 203 Squadron. Matty and Emma had great fun using the camouflage paint.

The RAF trip was excellent and a BIG thanks to POST PALS for arranging it!

Update May 2004

Well the results of the scan showed a few suspect areas again! Nick the consultant that he wants Matt to go back on the Dreaded Steroids. As far as we can see the leukaemia is under control which is a good sign as Matt’s counts are stable.

Matt has managed 4 full days at school and is really enjoying it. He even managed to join in the P.E activities!

Update April 2004

We would like to thank all at Post Pals for all the support and post which Matt receives, it really does cheer him up.

Matt is doing really well, no-longer needing to go to Hospital daily. The CT scan showed an area at the bottom of the lung which they say is due scarring, hopefully it will correct itself but there could be permanent damage. The have been reduced and his weight is slowly moving down again, just blame the STEROIDS for his mood swings!!!

All the breathing results came back ok, but again the exchange value of the lungs weren’t as good as they should be but again they could get better, they said that Matt won’t be able to become an Astronaut or do deep sea diving!

Matt went to school for the first time last Monday after Easter and stayed all day, he had a great time catching up with all his school mates and he settled in with his new teacher fine! As he was in year 3 when he left and now he is year 4.

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Luke H

14 June 2012

Story written 2004

Luke and his brothers were diagnosed with X-Linked Lymphoproliferative Syndrome (XLP) back in November 2003 after suffering from acute anaemia.

The only cure is a bone marrow transplant which Luke is due to have in potentially late in 2005 or 2006. He will be the 4th and last of the brothers to go through this and it is possible that his older brother Nathan could become his donor.

Luke is like every other 4 year old – apart from he also wants to do everything that his older brothers also do – at times infuriating them.

Luke is very cute and knows how to play the cute card. He is very sociable and likes being around adults and other children. Daniel is his best friend at home and he has a very close little girl friend called Becky.

He loves everything and everyone and is a pure bundle of joy.

Update 18th August 2010

It’s been a while since we last put out an update – which hopefully for those of you who have been following us now for almost 7 years will know that things are going well!

We had a wonderful holiday down at an amazing place in Dartmoor. Indeed as a result of this we now have 4 chickens in a coop in our garden – any suggestions of names would be most appreciated (we have already come up with ‘roast’, ‘fried’, ‘tikka masala’ etc).

Last Friday we picked Luke and Daniel up from a wonderful camp for children who have been through tough times (‘Over The Wall’). They both had a great time but on the way back we were able to reflect on just how well Luke has recovered from this time last year. You may recall that we had to eventually bring Luke home from this camp last year as he became exhausted. But as he had a stoma bag, was receiving both IV TPN and a milk feed it probably wasn’t too surprising. This year we were told that he was last to bed and first up every morning – and that he volunteered for everything. Indeed he even scaled a climbing wall. And he is finally growing again. In just 6 weeks he has grown an amazing 2.5cm. So he has now put back the height he lost when his spine ‘crumbled’ due to low bone density – and he is again walking much more upright.

Update 17th June 2010

Luke is very well indeed. He is now practicing to enter ‘Britain’s Got Talent’ as a budding opera star. Our ears have never hurt so much…

At clinic at GOSH two weeks ago it looked like he would be finally coming off the last lot of steroids and then basically onto penicillin only. The GVHD seems to have settled down and amazingly he is now eating normally (although still very selectively). He is off the overnight TPN (hurray!) and the overnight Modulin gastro feed has been significantly reduced; if all goes well he will be of this within a month.

However we are not quite there…

A lung function test at GOSH on the same day, suggested that his lungs are only functioning at around 60% of capacity. When he went through the issue of his ruptured bowel he also suffered a deflated left lung; and it now looks like he may have bronciectasis from XLP rays and scans. So Luke has just started on a 2 week course of IV antibiotics to see if this improves things. However at Southampton General Hospital yesterday, they repeated the lung function immediately before the first antibiotics and his lung function is now 71%! The bottom end of normal is 80% though.

So if all goes well we will be back on course in a couple of week’s time.

Update 16th April 2010

Very good news – the bug isn’t MRSA.

Also it would appear that Luke doesn’t have a leak in his bowel, but the pain was caused by pneumatosis which is treatable by the antibiotics he is on.

He is expected to come home during the day tomorrow and Sunday and then to be home early next week.

Update 15th April 2010

Luke has some constant pain around his bowel so we took him into Southampton General Hospital to be checked out. A scan suggested that there is a small tear where his stoma previously was. This was obviously a huge surprise to us, as he has had no problems down there since Christmas Day. He is now on antibiotics and nil by mouth, and was fine by the afternoon. So the plan was to observe for a couple of days and then have a home plan.

We have just heard though that Luke may have MRSA. They have detected a ‘Staph’ bug in his lines and only further tests will reveal which it is. So he is now in isolation and we should hear at some point on Friday afternoon.

Update 17th February 2010

Luke is coming down on the steroids and if everything remains well we should reduce them again in a week’s time. His skin GVHD seems to have settled down and his bowels are performing well.

The only downside is that about 10 days ago at school he was pushed and fell over and now has his left hand in plaster. Aside from the initial pain (small chip on a bone) he is very proud of his red caste.

Update 26th December 2009

My two Christmas ‘wishes’ came true this year.

Firstly, I wanted a day free of hospitals – and as all the boys are so well we definitely got this.

Secondly, I wanted to see Luke’s ‘output’ switch to where it should be coming from – so that we would know that we would soon be ‘stoma’ and bag free, and since early morning on Christmas Day this has also come true.

We had a very relaxing time, watching DVD’s and laughing at how out of tune I am on ‘Band Hero’ on the Wii.

Update 22nd December 2009

Luke is now home after his mini ops and as you can imagine is a little sore.

For 48 hours the ‘output’ did dry up out of his wound and naturally we started to get quite excited, but it is back flowing through the wound now so my early Christmas present hasn’t quite arrived.

Update 19th December 2009

Luke came home yesterday afternoon. It has been yet another long haul but it is great to have him home – and with Christmas almost upon us it looks like we may all be under the same roof unlike the last two years! The best Christmas present for me is the change in ‘output’ suggesting the hole is healing on its own. A few days ago for every 10ml out of the wound there was just 1ml from his bottom. Yesterday that ratio changed to 1 to 1 and so far today there has been significantly more out of his bum!

Luke will be going back into Southampton General Hospital on Monday for an operation repositioning his central line and also the ‘cruelest cut of them all’. He will stay in overnight but we would expect him home on Tuesday.

We are all somewhat shattered and intend to have a quite time now.

Update 11th December 2009

It’s been an interesting day – actually potentially wonderful and also a little worrying.

The surgical team met this morning to discuss Luke and there was no one opinion on how to proceed. So the top man (who operated on Luke – saving his life this time last year and to remove the stoma) came to examine the wound. He was very surprised at what he saw. It would appear that the wound has formed itself into a stoma directing output out – and so it was decided that there would be no need for a second stoma! The view is to let this continue and it should naturally heal – so the surgery is off on Tuesday. This could take up to 3 months – but would be better than another stoma for a year and then having to go through this surgery again.

And this afternoon there was a clear slowing down of output but it remains that it is coming both out of the wound and through his bottom.

However Luke will be having surgery probably on Monday 21st December to reposition his Hickman (central) line and for a circumcision – he has had too many catheters.


But we are in a battle – and tonight I left him asleep in hospital with a temperature of 39 degrees – the first temp he has had since he was in. He was crest-fallen as we had planned to bring him home during the day tomorrow with the hospitals blessing. The most likely culprit is the wound.

In truth both Allison and I are a little ‘punch drunk’ by all this. We do feel we are in a battle and today has been a significant step forward – but we remain vigilant as we move ahead.

Update 10th December 2009

Luke remains well and we are getting roughly the same amount of output out of the wound and his bottom. At some point this PM he will be meeting players from Southampton FC on the ward – strangely he is not too bothered…

I pressed the consultant this morning to get a realistic probability of the hole now healing itself – we are around the 20% mark.

As I stated in the last update, they will almost certainly make a decision on Monday if there is no change to go ahead with a new stoma. It is likely that the surgery would be on Tuesday AM which would coincide with Nathan’s 16th birthday and also the Christmas Concert on the ward that Luke has been rehearsing his violin so hard for.

A number of you have asked why they won’t go back in and try to patch up the hole. The reason is that it will be too mucky in there and the bowel too damaged after having his output flow over it for a week or so.

We really do need a miracle now.

Update 9th December 2009

Ho hum. We still have output coming from both his rear end and the through the wound – with no sign of the later abating.

There is real concern that the wound will get infected and they are well aware that this can’t go on for too much longer. So it looks like we will have a formal review next Monday and if the losses are still the same from the wound then they will have to put Luke through another 6 hour operation plus a new stoma. It would be at least a year before we could try for a reversal then. If the wound does get infected then this would mean operation would be almost immediately.

Luke remains very well and is currently in the school room making pizza.

We (once again) feel like we are living on a knife edge – we really are desperate to see this little hole heal. The impact of this failing is just too horrendous – it is a real limiting factor on Luke’s life. Plus the thoughts of another year of managing a stoma and not having a full nights sleep are just too awful.

Update 6th December 2009

Luke remains clinically well but the leak is still very much flowing. He is back on his favourite Paim Brown ward and so is very happy as he is well known and loved – plus he has the excellent school room to look forward to tomorrow.

The expectation is that at some point the leak will heal itself and all will be well. We did become aware today that Luke is on a very high dosage of steroids. The surgeons upped the amount at the time of his operation as ‘cover’ but he is still on this high dosage 11 days on. Steroids are very wonderful as they slow everything down – including healing… We are now very much on the case about this.

Update 5th December 2009

News is mixed.

The output through Luke’s wound increased last night but is still really a trickle.

But Luke remains very well and with it – no temperatures and there was output through the right place as well. The ‘free drainage’ from his stomach would also seem to have just about dried up and the excess water which was making his feet, hands and other places swell up is also much more under control.

So it does look like all the bits are kicking back in – BUT we still have this leak that could mean another operation – a new stoma – and back to square one.

Update 4th December 2009 (evening)

A mixed and actually rather worrying day. Around 2pm this afternoon Luke had a clear leak through his wound – showing that there is a leak in the bowel (probably where it was all sown up). If this becomes serious then we are looking at another 6 hour operation and a new stoma.

BUT since then there has been no more leaks (6 hours), he remains well and seems to be in a bit less pain after producing a huge ‘output’.

So we are all (parents and doctors) on a watch it and see over the next few days. If he becomes unwell or the leakage becomes much worse (takes us back to Nathan and his b-cell lymphoma almost 13 years ago) then they will quickly operate. Please pray.

Update 4th December 2009

The breakthrough! Yesterday afternoon Luke finally delivered the goods. They were two ‘starvation poos’ which are exactly the same as a new born baby would first produce. And this morning another formed delivery. Huge relief!

Luke is still in intense pain though. Indeed, it is probably the worst pain that any of the boys have experienced over the last 6 exhausting years. And there is little medicine that they can give as it comes in waves. Luke has realized that the morphine self administered pump doesn’t help and the only medicine which is called buscapan – but even this isn’t really touching it. He is exhausted as well from the constant waves of pain. We do expect this to fall off as his output increases but it really isn’t pleasant and can’t come quick enough.

Added to this he still has excessive fluids in the wrong place – although with a full does of Albiumin under way this should start to see this come back into line.

Thanks for praying – it makes the difference.

Update 2nd December 2009

The news on Luke is kind of mixed but moving forward – but not at the rate any of us would like.

His lungs seem much better and any ‘rattle’ has now disappeared and he is able to cough well and take on some simple physio. Also, we found out that the fluid retention was caused by him having low Albium which is currently being put right.

There were concerns on Monday that there was a ‘mass’ detected on an x-ray which could have indicated that there was a leak where the bowel was repaired. If this is the case then it could be life threatening and require immediate action – with the outcome being a new stoma. But as Luke remains clinically well this now seems highly unlikely – he would be a pretty ill young man now if this was the case. It is possibly that this mass is the fluid that the current procedures should put right.

And last night the doctors detected ‘bowel sounds’ which suggests that things are starting to work. Luke is getting the ‘call’ now quite regularly but isn’t yet able to push anything significant out. But these are signs that things are slowly awakening.

It is possible that the delay in Luke’s stomach and bowel kicking back in is because of the steroids that he is on to hold back the Graft vs. Host Disease (the main cause of the ruptured bowel a year ago). So it is very much a waiting game at the moment.

Luke is still in considerable discomfort but to show his positive nature, requested that his violin was taken in yesterday so he can rehearse for the Christmas party in main ward that looks after him. Not sure of what the other children will make of this.

We will keep you informed – please keep praying for (literally) a ‘break through’.

Update 30th November 2009

Well once again we face some interesting times.

The initial plan we had for Luke’s stoma reversal was that he should be home now – but he remains in Southampton General Hospital for the foreseeable future.

As I reported before, the procedure went well but things haven’t been so good over the last 48 hours.

At the moment Luke’s stomach and bowel are not working properly. We know that it can take some time for these to ‘kick back in’ but we obviously do need to see this. That being said, Luke has passed several ‘poos’ of mainly green bile so it does show that there is some activity. This action and also some pain from the wound mean that he is also now back on the morphine pump. This did enable him to get a good sleep last night.

Luke also has a partial collapsed lung which is also good news. We were aware that there was a risk of this and you may recall that this was one reason why they delayed 2 weeks ago. At the moment there is no sign of any lung infections and he is having a good spread of antibiotics. He is also doing some simple physio and this seems to be helping.

But he also has some water retention within his stomach which the doctors are concerned about. The initial reaction was that there might be a small hole in the bowel, but as he has pooed and is clinically quite well this is a bit of a mystery at the moment. Indeed Luke wanted to go to the school room this morning. We welcome you prayers.

Today marks the 6 year anniversary of the diagnosis of XLP. It is hard to think that it has been that long. And for the last 3 ‘anniversaries’ Luke has been in hospital: 2 years ago for his second BMT, a year ago with the ruptured bowel and today because of the stoma reversal. But we are still all very much here!

Update 26th November 2009

Yesterday’s operation to reverse Luke’s stoma went well – and he now has a normal looking belly!

Luke is very well and for those of you who are friends with him on Facebook, you will have seen that he wrote up an entry within 30 minutes of coming back to the ward! He is still in some pain and has a morphine pump which he can use as required. It is likely that he will be in hospital for a few more days.

Huge relief here!

Update 25th November 2009

Luke is now in hospital ready for his stoma reversal which should be late this afternoon. He has already been in to see the lung consultant who gave him the all clear (and was surprised that they didn’t go ahead two weeks ago!).

He is really looking forward to see the end of endless bags – but we know that this is still a serious operation and that it will take some time for ‘things’ to get back to normal. So please continue to pray for him.

Update 11th November 2009

Luke’s stoma reversal has been cancelled as he has a ’fruity cough’ with a concern that this could end up becoming a chest infection. It’s a shame that it took the medical team until after he had completed the bowel prep to discover this.

So he is rescheduled for two weeks from today and will be coming home with an antibiotic nebulizer which hopefully should do the trick. We will insist that they assess him before starting the bowel prep.

We are obviously all hugely disappointed.

Update 6th November 2009

It’s amazing to think that we first received the diagnosis of XLP almost 6 years ago. It’s been a couple of weeks of good news.

Luke will be going into Southampton General Hospital next Tuesday to start the prep for his stoma reversal next Wednesday PM. He is expected to be in hospital for a further 3 to 5 days – depending on how things go. He is very relaxed about this and is organizing his time in there. So after almost a year of sleepless nights (because of the need to empty his stoma bag) we can start to look forward to 7 hours sleep a night! Although we know that it will take some time for his ‘functions’ to kick in again. He is also almost off the overnight TPN (replaced with an overnight milk feed) but we will now hold back on totally stopping this until he is home after his op.

Update 9th October 2009

We saw the gastro consultant about Luke’s bowel first thing on Monday morning at Southampton General Hospital – and he said that as long as Luke could tolerate more overnight feed (Modulin) of up to 500mls, he would be happy to recommend that they reverse the stoma. On Thursday night we managed to get just under this amount into Luke overnight – with no increase in output! So the internal communication has now gone through the hospital to get a date to reverse Luke’s stoma… it really can’t come too quickly for us all.

Thanks to everyone who has sponsored us for the walk this Sunday; we have smashed through the initial target we set! All the money raised will be going into medical research into this awful condition – and a BIG THANK YOU to all who have supported us this far. For those of you who are early birds, I will be live on BBC Radio Solent giving an update on the boys.

Update 18th September 2009

Luke was ‘scoped’ yesterday at Southampton General and the consultant who undertook it was pleasantly surprised at how well the bowel has recovered.

Indeed we will be meeting him in 3 weeks time with the view to agreeing a date to have the colostomy reversed – he sees no reason why this shouldn’t be the case.

Whilst we appreciate that it will be a battle to work with Luke to recover ‘bowel control’ this is a great positive step forward.

Some of you who have seen Luke recently will be aware that he is now practically bald. Over the summer his beautiful curly brown hair started to come out, almost certainly as a result of the ‘end’ of skin GVHD (Graft vs. Host Disease). He has coped well with this and there are some signs of re-growth.

Update 19th August 2009

Luke recovered well last week after his replacement hickman line, so we happily set off on Sunday morning to drop them all at their ‘Over The Wall’ camp, allowing Allison and I to book 3 nights in a relatively local hotel.

Monday morning we had a call from the camp to say that Luke’s TPN pump had given up the ghost so we had to drive home to pick up the replacement and zoom back down there again.

Tuesday morning, as we were just sitting on the beach, we had a call to say that Nathan was in Dorchester Hospital with a suspected broken neck after a rather exuberant ‘rugby’ tackle by one of his fellow campers. So we zoomed down to Dorchester and he was of course fine and then dropped back off at camp.

Wednesday morning, we had another call to say that Luke was exhausted and we would need to pick him up. He is now back home and fast asleep.

So (assuming we don’t get a call on Thursday) the car can be put into remote for the pick up trip for the rest of the boys on Friday.

Update 10th August 2009

As expected, Luke will be going into Southampton General Hospital for a replacement Hickman line. Come Saturday morning he was in a lot of pain as the TPN went in – and despite initial assurances from the weekend doctor that it was probably an infection, our initial suspicions were proven right.

This seems that the scheduled scope that was planned for this Thursday PM will now be postponed until early September – as it is too early after the anesthetic which he will have tomorrow. At least the doctor gave us the reassurance today that it is a matter of time before they reverse the colonoscopy (stoma)… role on that day.

Tomorrow they will also do ‘wash out’ on his left lung to get rid of the last bit of infection which may be still lurking, but his lungs have definitely got much better over the last few weeks.

We are still hoping that Luke will be joining his brothers at a special camp next Sunday for a few days, which will give Allison and I some respite and allow us to take a deep breath again…

Update 27th July 2009

Luke now has a scope penciled in for just over two weeks time, which should give us a better idea if he is ready to have his bowel put back in him. There are still some strange things going on – for example he doesn’t appear to tolerate ‘dioralyte’ (which he is expected to have on the two nights a week when he is not on TPN) and he started a course of oral antibiotics last Thursday (because of a lung infection) but we had to stop them because he was having severe stomach pain. Yet he is digesting the little food he takes on and absorbing the rest of his meds.

Update 8th July 2009

Luke is currently off school because there is a suspected Swine Flu case in his class. The UK Governments advice has been not to panic as the only fatalities have been amongst people with ‘underlying medical conditions’. I guess this includes being immune suppressed. If he is going to manifest any symptoms then that should be 2 to 5 days after exposure which would mean he would be ‘all clear’ by Saturday. At this time he is very well and the output is well under control. So, we are taking the governments advice. Luke was gutted to miss school and particularly at not being able to do his violin solo at the schools concert tomorrow night.

Update 16th June 2009

Slow progress on Luke. He is still coming down on the steroids (25mls now every 48 hours) which is positive news and the ‘flow’ seems to be under control. Amazingly it has been over 6 months since the trauma of the ruptured bowel but still no idea when the stoma will be ‘put away’.

Due to Luke being on steroids now for such a long time, he will start some IV ‘bone strengthening’ medicine next Monday. Strangely, it is over 3 hours for 3 days each month. Luke has been complaining of lower back pain and it is almost certainly a result of the steroids. This is a medicine called Permidronate. Joshua has also had this and it did help.

We also found out that Luke has Adenovirus on board and as it is at such a level (212,000) they will start him this Thursday on an IV drug to help him fight this. Bizarrely, this virus has probably come on because they are lowering his steroids. Luke remains very well in himself though.

So one step forward and maybe half a step backwards…

Update 17th May 2009

As it’s been some time since I last sent an update out, you have probably guessed that all is pretty well in our household.

Both Luke and Joshua are on extremely slow steroid tales (but critically they are coming down) and this is going well.

Luke still has the stoma but the output has settled. We have been able to reduce his overnight TPN (and we actually get Saturday night off!). He loves being back at school and isn’t showing any signs of being too tired at the end of the school day. He is absolutely Mr. enthusiastic and last week joined the school orchestra in second violins.

Joshua is doing well at college and seems to want to stay on for another two years. Despite only making about 60% of lessons due to his heavy commitment to various hospitals (St Thomas in London for two days every two weeks, GOSH for a check up every 6 weeks and Southampton General for Immugloblins every 3 weeks, plus eye clinic visits etc.) he actually got 100% in his hardware course – amazing!

Nathan and Daniel are well and Nathan in particular is growing at an amazing rate. And Mum and Dad can now occasionally get out and start to restore a social life!

Update 9th March 2009

Another historic day as Luke went back to school (again!). It was hard to express just how excited he was about this and he was desperate to get back. Initially he will only be going mornings as he builds up his strength again. Hi ‘output’ is still up and down and we are still some way from having an idea when the stoma can be reversed.

An emotional and rather wonderful day.

Update 2nd March 2009

Yesterday was a special day. Daniel became a teenager. Whilst that is special in its own right, it is extra special for an XLP affected boy – as without a bone marrow transplant few make it into their teen years. He is doing really well.

Luke has now been home for just over two weeks and is loving life back home. We took him in to see the gastro consultant on Friday morning and he was delighted with the progress. It was quite stark in that either with new treatments they work or they don’t and they have clearly worked with Luke. So we were even able to reduce the TPN by a quarter although for our own sanity it is still going over 12 hours. Luke bristles with life and fun and we are very proud of him.

Update 13th February 2009

Luke finally came home yesterday – he was elated as we all were.

It has been another difficult 2 months for us, but we are just grateful that he made it back home. He has been incredibly brave and up beat through all this – a true inspiration.

Along with Luke arrived mass of extra equipment including a NHS provided fridge to keep his TPN in! We are also being supported morning and evening by nursing staff to ensure that we set the TPN up correctly – not sure if we get a certificate at the end…

Update 8th February 2009

Luke should come home on Tuesday after 2 months in Southampton General Hospital. He has really been very well for all of this year and so there seems to be no reason for him to stay in.

He will however becoming home on ‘home TPN’ so both Allison and myself have now acquired another IV skill – and the NHS will be dropping off a fridge on Monday as this is needed before the 2 week supply arrives on Tuesday! The TPN will run for 12 hours over night.

He will also be coming home with the stoma and at the moment there are no plans to reverse it. His output continues at around a litre a day (some days better than others) but they seem happy with this as a level and have told us it will just take time (although no one is saying how long) for everything to come back together.

Luke is well in himself and has taken all this in his stride. He has now recovered all of his weight (in fact he is now the heaviest he has ever been) and all his bloods and other measures are in the ‘normal’ range and stable.

Allison and myself are really looking forward to Luke coming home but there is a little trepidation – plus I have volunteered to set my alarm for 3am every morning to give him one of his drugs… but we really do want us all back together again.

Update 28th January 2009

Luke is doing well – although his ‘output’ continues to mystify us all. Earlier this week there was a clear downward trend and we were getting quite excited and now, for some unknown reason, in the last 24 hours it doubled in size again and we are nearly back to where we were at the start – frustrating would be a huge understatement! At least colour and texture are better (sorry – we spend a lot of time looking at this).

The plan now is for Luke to come home on TPN (an IV ‘food’ which is given over 12 hours and delivers everything he needs to thrive.) Allison and myself will be trained in setting this up next Wednesday and then assuming (and it is a big assuming!) that the output settles down he will come home as soon as arrangements can be made for a new fridge and the TPN to be delivered. But we are totally dependant on seeing the output settle and until this happens we are ‘stuck’ in no-man’s-land.

We have been told that it will be a significant amount of time before things return to normal and he can have the stoma reversed. No one wants to have a guess at significant but we are assuming months rather than week… but things can change quickly.

I mentioned that Luke is actually doing well. All his bloods and other measures are all slap bang in the ‘normal’ range and he toddles off to the hospitals school room at 9.30 and 1.30 every day. He is ‘nibbling’ on some high fibre foods again to help him stem the losses but has no real appetite and is full of mischief (although after two months in hospital he really does want to get home). We enjoy a kick around in the ward corridor early evenings and he has developed a liking to Burger King onion rings (for some reason that escapes me there is a Burger King take away in the hospital). He definitely enjoyed his birthday at home (at least for part of the day) and thanks to everyone who sent him a card.

Please continue to pray that we will see a break through in this – Allison and myself are naturally shattered after alternating spending time with him in hospital overnight plus taking care of our other wonderful sons. You know you have been in hospital too long when the cashiers in the hospital restaurant assume we are staff!

Update 18th January 2009

Luke is doing well but is still in Southampton General (we are rapidly approaching the 2 month mark) but is allowed home for around 7 hours on Saturdays and Sundays which is a great boost.

The EBV load has disappeared after just one treatment of the IV medicine (Rituximab) which is great news. Plus he has put back on all the weight he lost – when he was admitted his weight went down quickly to 19.5kg but is now up to 23.3kg – again showing that he is absorbing some of the milk feed he has.

We are still however struggling to get his gut working properly again and are still seeing high stool losses on some days. This is really what is keeping Luke in now and what we (desperately) need to see the end of.

Luke remains extremely well and positive despite yet another extended time in hospital and is very much looking forward to his 9th birthday a week today.

Update 6th January 2009

We are still in somewhat of a waiting situation with Luke, as each day the diarrhea continues at somewhere between 1 and 2 litres a day. There are encouraging ‘blips’ where he seems to dry up but then the stoma bag fills up again. At least his U+E’s seem to be OK although he is having replacement fluid for his losses which includes a good whack of potassium.

Late last week we were also told that the old enemy EBV was back on board. They have examined Luke and yesterday he had an x-ray and ultrasound which showed no raised lymph nodes and we should have the virus load numbers back today – depending on whether the numbers are up or down will determine the course of action.

Through this Luke has remained positive and just got on with it. He has been a real testament of how just to get on with life when everything around seems dark and gloomy. He is much more mobile now and his weight is slightly up again (although well short of where he was before this episode started – he has recovered about 50% of the weight loss) and was able to come home for part of the day last weekend. He was very excited about the wards school starting again yesterday and was the only child there at the stroke of 9.30am. And as the subject this weekend is ‘penguins’ he is very much in his element.

We really do need to see this diarrhea stop now though so that we know that the bowel is viable – this is our New Year prayer.

Update 28th December 2008

Well, Luke did make it home on Christmas Day, and Boxing Day and yesterday… and it was a huge lift for us all. He is very well in himself but unfortunately we have still not seen the diarrhea settle back down – he is loosing about a litre a day. We have now stopped the modulin feed with the hope that his gut may settle and then allow us to recommence the feed. He has gained a little weight but he is still all skin and bones.

Tomorrow Luke will receive the first infusion of the drug that should allow us to both reduce the high dosage of steroids that he is currently on (they will be halved tomorrow) and which should settle the gut further. Apparently it has an 85% success rate and we should see results towards the end of next week – we’ll keep you informed.

To add to our fun and games, both Nathan and Daniel have caught a bug or some food poisoning and were ‘big sick’ last night – although Nathan claims to be much better now (Daniel has gone to bed). I am due to take Joshua up for his ECP treatment at St Thomas in London tomorrow so it will once again be a difficult juggling act for us all.

So our New Years prayers are really simple – to see Luke through this difficult period with his gut and restored back to where he was and specifically GVHD free and to continue to see the huge improvements with Joshua that we have seen in his mobility and skin in the last two months. Amen.

Our blessings to you all.

Update 24th December 2008

Luke is doing pretty well. About 4 days ago we started to see ‘normal output’ from his stoma bag, but unfortunately we are back in diarrhea city due to an oral antibiotic which was started 2 days ago and has now been stopped! So hopefully in the next 24 hours we should see things go back to where they were 2 days ago… and Luke has started to put on some weight and is more mobile now.

Tomorrow, if all goes to plan, Luke should be able to come home at 10am and then be back in the hospital for 6pm (in time for Dr Who on the BBC!). As you can imagine he is pretty excited about this as we all are. There will be a juggling of presents and I think lunch will be crackers and cheese (never did like turkey much) but hopefully if only for a few short hours we will be together.

So it does look like Luke is responding to the high dosage steroid treatment he is on. The plan now is to start reducing this next Monday and introduce a new IV drug that should also help what is going on in his bowel. This is pretty critical as Luke can’t stay on the high dosage steroids for too long, plus we don’t want to see any further inflammation.

Seasons greetings to you all. We pray that this time will be a time of peace and joy as we remember the reason for the season.

Update 17th December 2008

Luke is much better and had a really good day yesterday. He woke ‘full of beans’ and launched back into making Christmas decorations. He was quite literally blown away by the parcels and letters that arrived for him yesterday from our friends at Post Pals – he loved the balloons in particular. Thanks guys. He even made it to the Piam Brown Christmas Carol concert (the ward he is on) and he took his first few steps yesterday as well. He should also commence his milk feeds today.

We have been told that we will still have the possibility of a bleed in his bowel for the next 10 days or so – please keep on praying that his bowel will fully heal and that he will go from strength to strength.

Update 14th December 2008

Yesterday was another real fight for Luke. He had a great morning and early afternoon making Christmas cards and decorations when we noticed that the output in his stoma bag had turned red. Shortly afterwards he passed a huge blood clot and several more followed – it was clear that he was bleeding into his bowel.

The team at Southampton came together and took him down to see if they could ‘clip’ the offending artery. By this stage he had lost approximately 50% of his body’s blood. But as he was going into theatre we noticed that he was now only passing dried blood and stool. And sure enough they were unable to find the cause – the offending artery had clotted. Whether this was due to God, the drugs they gave him, or his own platelets, we will never (in this life) know – we are just grateful that it did.

It was agreed that Luke would stay the night sedated in intensive care to give him rest so we duly left him and went home (we live a 15 minute drive from the hospital). At just gone 1.30 am we had a call to say that all was well but Luke would like to speak to his Mummy! Our brave little man had fought the respirator and won and then started to negotiate with Allison as to when she would come in.

I cannot describe how good and positive Luke has been through all this. There have been lots of tears of pain but never a question as to why? God has indeed put a fighter in him.

Update 12th December 2008

This afternoon I spoke to the consultant who is looking after Luke overall and he is now fully convinced that the underlying cause is the dreaded Graft vs. Host Disease which has so plagued the boys post their bone marrow transplants.

Positively, a course of intravenous steroids should get on top of it and start the process of getting Luke back on the road to recovery.

This will mean that Luke will be hospitalized for about another four and a half weeks – meaning that we will have our second successive Christmas courtesy of the National Health Service (and indeed the last 3 out of 4). Ironically this Monday we will feature in a leading UK women’s magazine saying how much we are looking forward to Christmas at home.

Luke finally had his Hickman line put in yesterday; it was held up by intermittent temperatures. He is still very weak (he can hardly walk), and still prone to lots of sleep. However, his old bubbly personality continues to shine through and he is spending much of his waking hours making endless Christmas decorations.

Thanks for your support, it means the world!

Update 8th December 2008

Post can now be sent directly to the hospital for Luke:

Luke Hartley,

Piam Brown Ward,

Tremona Road,



SO16 6YD

Update 7th December 2008

It has been a pretty good day for Luke. All of his counts – blood and u’s and e’s are now back in normal range and there is an overall sense that things are ‘moving in the right direction’. Yesterday his platelets were down to just 25 but this morning 122 – suggesting that his body is coming back to normal after the trauma of the last week. His stomach is soft to the touch and certainly much better on a daily basis – and (sorry for the detail) the colour of the losses from his stoma bag has also started to change from green towards brown suggesting that he is absorbing his Modullin (in hospital you spend a lot of time looking at this).

The only downer is that for the last two nights he has had some spikes in his temperature although he has a good spread of antibiotics being onboard.

Luke is now negative of any detected viruses, which hopefully means that tomorrow (Monday) he can have his Hickman line put in. It will depend on there being no show of the temperature again though.

So it is pretty good news. Luke is certainly in a much better place than a week ago. But he still has a long road back to recovery – he is still very weak, reliant on TPN and is now simply ‘skin and bones’.

Please continue to hold him up in prayer and the rest of us – we are pretty exhausted.

Update 5th December 2008

Unfortunately Luke didn’t have a new Hickman line yesterday as they detected a ‘skin bug’ which meant that the new line could quickly become infected. However as the ‘temporary neck line’ was only expected to be in for 7 days they are putting a second replacement neck line in about now. The plan is to then replace this with a Hickman line probably on Monday… Luke was not very happy about this as the neck lines definitely restrict movement.

Aside from this he appears to be doing very well. There have been a steady stream of different doctors and nurses visiting him to check various things out and he has a smile and cheeky comment for them all. He seems to be tolerating the Modullin (milk type) feed well which is encouraging. Unfortunately the pleasure of being with him has rested on Allison as I am just starting to recover from one of the many flu type bugs that are around at the moment. Hopefully I will be able to visit my brave boy over the weekend.

Please continue to pray for Luke – still a long way to go.

Update 3rd December 2008

It is all good news today with Luke.

His bowel and gut is now working and this seems to have resolved the issue with his potassium levels. Also, much to our amazement, they have switched some of his drugs to oral and are starting him on a small milk type feed (he is on TPN at the moment – a special bag of minerals and fats that goes into his blood and gives him all he needs in terms of food).

He is out of isolation as he seems now to be bug free and so hopefully tomorrow morning we will get him down to the play and school room. He is still very frail and so he also has regular visits from a physiotherapist.

Allison has been trained in the use of the stoma bag and I have this joy tomorrow.

Tomorrow PM he will however be going down to theatre for a replacement Hickman line. Last week we knew that they had only put a temporary line in (his neck) as the idea was to have it located as far away from the ‘stuff’ coming out of his perforated bowel as possible. The line works well in terms of delivering his IV medicines, pain relief and TPN, but doesn’t bleed back which means that they have to prick him where ever they can to get blood to test. As he is doing so well they have decided to move this forward – it was planned for early next week.

So we are ‘getting there’ but it still has been a shocking week and not one we will ever forget.

Please continue to pray for Luke.

Update 2nd December 2008

Luke spent last night in intensive care to monitor his potassium levels but has returned to the Piam Brown ward this morning. They were concerned that overnight on PB they could not ensure they were on top of this due to staffing. The encouraging news is that these levels are now within normal range and he is only receiving ‘normal’ potassium top-ups. So we expect Luke to be pretty shattered today as ICU is very busy and bright over night.

We are still waiting for the gut to kick back in although the ‘output’ coming into his new stoma bag is changing consistency positively – but please continue to pray for this.

Update 1st December 2008

Luke had a settled night with little pain – although he was up weeing every hour which meant that both Dad and son were exhausted this morning.

Positive news is that there are no signs of infection.

Less positive is that his potassium levels have plummeted which could be very serious indeed. They are now giving him regular infusions of potassium and closely looking at his levels. It seems likely that the IV steroid that they are giving him is responsible for this.

And so far he has no ‘bowel sounds’ which suggests that the bowel is as yet not back working. This could be due to the low levels of potassium.

So we once again face some significant issues… we welcome your prayers.

Update 30th November 2008

Luke is doing well and had a pretty settled night. He managed to successfully pull his catheter out last night (which should not now be replaced) and also there were signs that the bowel is starting to work again as the colostomy bag had to be fitted. He has not spiked any temperatures but is desperate for a drink of water and some ice – we are only able to give him a little water on a sponge.

He is still very weak and sleepy and did start to have some pains last night but was able to push the button on his morphine pump to give himself a dose.

Thanks for standing with us on this. Later this morning I will take his brothers in to see him and then we will start the alternate days of Mum and Dad staying with him.

Today marks the fifth anniversary of the original diagnosis of XLP. Against the odds we are all still here and very much fighting and we know that through encouraging more people to become bone marrow donors and establishing the XLP Research Trust to help other families that we are making a real difference to others in similar dire circumstances.

Thanks for walking through the Valley with us.

Update 29th November 2008

We’re pleased to report that Luke is out of Intensive Care and back on Piam Brown Ward at Southampton General. He is doing very well but is still tired and has yet to feel the pain from the surgery. All the doctors are really pleased at the moment…

The suspicion now is that this is a fungal infection with an underlying bout of Graft vs. Host Disease added in. Luke has a steady regime of antibiotics being pumped through him.

Please continue to pray specifically that he will be infection free – the next 24 hours are crucial.

Update 28th November (evening)

Luke is in Intensive Care after a successful 3 and a half hour operation. They were not able to repair the hole in the bowel but have fitted a temporary colostomy bag which they expect him to have for 6 weeks. He is sedated and all the signs so far are positive.

The next 48 hours are pretty crucial as there is a risk of infection – and whilst Luke is a year post transplant he is still relatively immune suppressed – so please pray about this specifically as he has had ‘poo leakage’ from the hole in his bowel.

Update 28th November 2008 (afternoon)

Luke is due to go for surgery within the next couple of hours to repair his bowel.

Please pray.

Update 28th November 2008

Luke went into GOSH for his scope on Wednesday which showed very acute inflammation in his bowel. The consultant was very surprised about this and it is unclear what is causing it. By last night Luke was unable to hold down any water of milk feed so we took him into Southampton General Hospital this morning. It would appear that he now has a perforated bowel possibly brought on by the scope. Unfortunately Luke does not have a line in for medicines and has few viable veins, but they were able to get a cannula in this morning. However as he has deteriorated so rapidly they are not happy to anesthetize him to put a line in – so this is currently all the access they have. Not good.

He is starting a course of antibiotics which they hope over the next few days will perk him up again and start to sort out this problem, if not then it will be surgery which is just a new dimension.

This is a huge shock considering just how well he had been doing – this Sunday we will reach the 5 year mile stone of being diagnosed with XLP and we had hoped to be over the very worse.

Update 22nd November 2008

Luke will be going into Great Ormond Street Hospital on Tuesday for a scope on the Wednesday. He has been having stomach pains now for about 2 months along with diarrhea and it is either an infection or more likely a bout of Graft Vs. Hast Disease (GVHD) but because this has been going on for so long he has lost weight and he is now pretty exhausted. Fortunately, he is still absorbing food (although he has little appetitive) but we are able to load him up with Modulin feed and diarolite through his PEG. He has been off school for the last two weeks now. But the hope is that by Friday we should know what is going on and the treatment can start – it is just such a shame that it has taken so long. Luke is now just over a year post his bone marrow transplant. We welcome prayer support for this – a scope is not pleasant.

Update 12th October 2008

On Saturday morning Luke was in Southampton General Hospital having a cyst on his ‘derrière’ burst and drained. We don’t believe that this is directly related to XLP, his bone marrow transplant or anything post – just sheer bad luck! Luke was back home last night but was still sore.

Today we as a family participated in ‘Walking The Test Way’ both to celebrate having four sons come through successful bone marrow transplants and to raise funds to support the work of the charity. You could choose from 6 walks from 2.5 miles through to 26 miles along the beautiful countryside alongside the River Test. Unfortunately only three of us completed the walk and Luke was gutted that he missed the walk – as he has worked really hard filling up his sponsorship.

Update 2nd September 2008

Luke has been very well since coming home. He still has occasional flares of skin GVHD but is doing really well. Indeed, this weekend was kind of historic as I took him to Cardiff Bay to see the theatre production of Chitty Chitty Bang Bang. Last year we were all special guests at the Mayflower Theatre in Southampton for one of their nights and they also collected a large sum of money for the charity we run. But Luke was between transplants and didn’t have the immunity to allow him to go. So I made a promise that when he was well we would take him to see the production. Shortly after coming home in January Luke asked me where ‘Kuala Lumpur is?’ – he is using the internet well now and had tracked down where the theatre company had moved to. Fortunately the show has just finished a stint in Wales. It was wonderful and kind of historic that after everything he has been through that we should make it.

Update 24th July 2008

All is well in our household and with summer now upon us things are definitely looking up.

Luke has loved going back to school and was probably the only pupil disappointed that the school broke up for the summer holidays today! Although the initial plan was for him to go in for mornings only he actually has done full days since a week last Monday. His bloods and other results are all good.

Joshua is also doing well although driving us all slightly insane trying to find a summer job! He started to decrease the steroids today and the positive news is that his coughing has all but gone. He will be reviewed in clinic a week today.

Both Nathan and Daniel are doing well and Allison and Dave are actually sending some time together (although it will be some time before we can leave them for any period).

Update 14th June 2008

Luke came home today.

He is now very well with no sign of temperatures and is gradually starting to eat solid food again. It has been a difficult week though. On Tuesday Luke had two seizures, the second was extremely frightening and there were about a dozen doctors and nurses in his isolation room at one stage. They stabilized Luke over about 30 minutes (although I lost all sense of time) and then put him into a deep sleep. It appears that Luke has suffered from ‘Reversible Posterior Leucoencephalopathy Syndrome’ which is induced by one of the key immune suppression drugs – cyclosporine. Indeed Nathan also had this during his BMT.

The key is the first word of the syndrome – Reversible – and indeed by Wednesday morning Luke was out with me kicking a small football up and down the corridor. After an MRI and CT scan, plus a rather long and messy ECG, they have concluded that it has resolved itself. It was incredibly frightening to see Luke become so unresponsive and to see so many people rush around him. We are just grateful that he has recovered so well and so quickly and we are amazed that he is now home.

However even this was over shadowed by the loss of a very dear friend this week. We are still in a state of shock that this great man who has been such a great support to us over the years is no longer on this Earth. At least we have the comfort that now he is in Glory. Please pray for David’s family for peace at this time.

Please continue to pray for the boys for fullness of health. We take Joshua back to GOSH on Monday for a lung biopsy to see if he has some GVHD there – his battle is far from over.

Update 7th June 2008

Things have moved faster with Luke than expected. After his first dose of steroids at around 6pm on Friday he has not had a temperature! Indeed, Allison thought that he was actually cold today. Great news!

Update 6th June 2008

It has been another ‘rollercoaster’ week for Luke as he has continued to have regular soaring temperatures and at times go through extreme pain (thank you CT scan team at GOSH!) to find out what’s going on…

The conclusion is, after discounting just about every type of infection and fungus known to man, that Luke has GVHD (Graft vs. Host Disease) which actually isn’t a surprise.

So the plan is to start him on a course of steroids (hopefully tonight) which should bring the temperatures down quickly – within the first 48 hours. Assuming that this happens, the consultant suggested that he should be home ‘soonish’.

It’s been another long haul and Allison and myself are both shattered in every way possible.

Update 1st June 2008

It’s now been two months to the day that Luke went into hospital initially with rotavirus. He is still regularly spiking temperatures but has now gone through the full suite of antibiotics and last Friday he was ‘scoped’ to see if there was any sign of GVHD (Graft Vs. Host Disease) going on in his gut and stomach. The initial comment back was that ‘it wasn’t obvious’ but we should get the first results back on the biopsies taken tomorrow. If it is GVHD we would expect a short course of steroids to sort it out!

Otherwise Luke is well, tolerating his milk feed well and when the temps are not soaring, back to normal. However two months of being laid in bed is far from ideal and we know that when he is home we will (again) need to work on his fitness.

So we are in a strange, horrid, holding pattern that we need to see broken as soon as possible – for all of our sanities.

Update 26th May 2008

Thanks for all the encouraging messages.

Some more positive news on Luke… As of his tests yesterday, both the EBV and Adenovirus results show counts of zero! We are very grateful to the makers of Rituximab which has wiped out his B cells where the EBV live. Earlier this week we were sweating on a CT and ultrasound scan to see if Luke has lymproliferative disease (i.e. lymphoma) but he is now clear on this. He is now much better in himself and tolerating the milk feed well.

The temperature spikes persist though and we are (slowly) going through tests and treatment to try and get on top of this. He has just completed a course of antibiotics and will tomorrow start a course of treatment for anti fungal and then if that doesn’t have any impact, at some point next week they may consider ‘scoping’ him for GVHD (Graft vs. Host Disease) and then maybe looking at EBV in other cells other than B cells – it just seems to go on and on and on. However if they can get on top of these temperatures he will be on his way home.

Amazingly Luke has now been in hospital (Southampton now GOSH) since the 1st April. Adding in the two bone marrow transplants he has been in hospital pretty much half of the last year – and of course has now been away from school for over a year as well.

But Luke (like the rest of us) is pretty resilient and when the temperatures are not souring he is back to his old chirpy cheeky self.

I’m often asked by kind enquiring folk what impact XLP has had on the family beyond the obvious of going through a bone marrow transplant and the associated aftermath of this treatment. Well there have been some positives in that we have been able to encourage more folks to become bone marrow donors as well as the medical research that the charity we formed has started into this awful condition. As a family it has drawn us together and given us unbreakable bonds – despite the relative lack of time we have been able to spend together.

But there are significant disadvantages as well… The time apart has been hard on us all, the kids have had to put up with dads cooking and it has been hard to look beyond what is happening in hospital on that day – when the boys at home need help and attention as well, particularly for Joshua with his GCSE’s. Personally, I long to have an adult conversation that is not centered just on the boys and to spend a day when the consequences of this dreadful condition are not before me. It would be nice to be free to go back to work full time, and to be able to commit to a diary and not have to cancel and leave others in the lurch when a medical emergency raises its head. And it would be great to have a relaxing holiday together… and maybe spend some quality time with my wife.

All this makes me even more determined to help ensure that in the future others don’t need to go through this valley experience and to ensure that the work of the XLP Research Trust is successful (

Update 14th May 2008

I have much better news on Luke. Following the first dose of Rituximab last Friday we saw a sharp drop in his temperatures over the weekend – on Saturday Luke commented to me that he wasn’t shivering anymore. We also found out last night that his EBV load has dropped from over 2 million to 117,000. This is still high but a very significant drop (although it is logarithmic rather than linear for any statisticians out there!) The consultant was very pleased at ward round today and the plan is for Luke to have his second dose of Rituximab this Friday.

Luke is still very tired and jaded and is still having regular temps heading into the late 38’s – but these are controlled well by IV paracetamol. He has had 5 days on nothing but fluid and is now on TPN (an IV food that gives him all his calories and vitamins he needs) but is still having regular but reduced stomach pains. The team at GOSH believe that this will subside as the lymph nodes shrink.

Other good news is that the second virus which was detected, Adenovirus, has also come down significantly from last week – 13,000 to 3,000. His own immune system is handling this and it bears well for the future.

So the news is good and positive – although still some way to go.

We ‘soldier on’ in our household trying to keep everything ‘normal’ back here whilst Luke is back up in London. Joshua starts his GCSE’s next week and we are so pleased at how well he has done so far.

Thanks for your support and love.

Update 6th May 2008

Luke has been in Southampton General Hospital for 6 weeks now, initially with rotavirus, then an autoimmune response reaction, and then what we think was an unknown infection. However, for the last few days he has had soaring temperatures coupled with increased pain in his stomach. We have now had the diagnosis for this which potentially could be very bad news. It now seems that Luke has significantly raised levels of EBV and a CT scan this morning showed that he had a number of raised lymph glands across his body. This could just be EBV or could indicate possible lymphoma which would be a worst case outcome. The combination of the temps and the raised lymph nodes means that this is a definite possibility.

So it looks like the plan is to send us back to Great Ormond Street Hospital in London for a full review and to agree treatment.

It seems that as we get over one hurdle, so we should face another and we would value your prayers at this time.

Update 14th April 2008

Luke has now been in Southampton General Hospital with rotavirus for just over two weeks. He caught it from his brothers who ironically we think picked it up at the same hospital (Daniel was in for two nights with an eye infection just before Easter). At the moment there is no clear end to the rotavirus – his ‘output’ is still very significant each day. Last week was a very worrying time when he appeared to have an autoimmune reaction to either one of the drugs or the virus itself, leaving him with low blood pressure, high temperatures (40 degrees at 1pm on Saturday) and a fast heart rate as well as fluid retention around his hands, feet and face. Yet on Saturday PM this all wonderfully resolved itself leaving medics at Southampton and GOSH a bit flummoxed. He still has some puffiness on the feet and face but nothing compared to what it has been.

He has been his usual brave self through all this and a model patient but he was quite quiet this morning – too long in a small isolation room.

Update 1st March 2008

Luke reached D+100 today. This means that he is 100 days post his second bone marrow transplant and the ‘rule of thumb’ is that if you reach this date with nothing major going on, then all should be well moving forward. Luke is well despite a short stay in Southampton General Hospital last week. It will still be a couple of months until Luke’s immune system is sufficiently recovered that he can return to school, but this is a real milestone.

Update 22nd January 2008

Luke is home!

He actually came home on Sunday and has started to settle in right away. He is very well and is enjoying being out of hospital and having the relative freedom of the house.

I don’t think that it has yet sunk in that we have now had all 4 boys go through successful bone marrow transplants. It seemed such a long journey through this valley that the end seemed to be just so far in the future. Whilst Luke still has a way to go to get back to full health – being able to go back to school is very much the end game – it is really wonderful news.

We have been so grateful for the wonderful support we have had – it has made such a difference to us.

Update 13th January 2008

Luke continues to do well and if all there are no hick ups then he should be home within the next 10 days or so.

I was able to take Luke out of the hospital briefly today which was yet another boost for him. Luke’s appetite is starting to return and he is also drinking more. He continues to be extremely cheerful and full of mischief.

Thanks again for your prayerful support we know that this makes the difference.

Update 3rd January 2008

Luke continues to show that his immune system is coming on well – blood counts are good and getting stronger. He still has this pesky adenovirus around although it is at low levels in his blood (almost can’t track it) but is in his stools, urine and the snot in his nose. So the diarrhoea is continuing and this is stopping him get back on a milk feed or solids. He is allowed off the ward now but we have to choose carefully the times to venture out so that there are not many people around (shame hospitals are full of ill people!) Our record for ‘Spot the Christmas Tree’ is 18. He is full of life and joy – really amazing. And the week before Christmas he had a special visitor – Sir Paul McCartney live in Luke’s room! In truth Luke didn’t know who he was but he was wonderful with Luke spending about 20 minutes with him.

Allison unfortunately has broken two small bones in her foot on Christmas morning whilst preparing to travel up to London with the boys. She is now in a plaster caste and is expected to be pretty immobile for the next 4 weeks or so. This means that David will be staying with Luke at GOSH full time with Allison based back home – not what was planned!

We spent Christmas together on Fox Ward at GOSH and it was really wonderful and a true lift for all of us – especially Luke being able to spend almost three days with his brothers. The staff on Fox Ward were amazing, putting on a wonderful buffet lunch and joining in with the fun.

As we approach the New Year we see real hope that we should be moving away from spending long times in hospital. Thanks for your continued support – it means the world.

Update 14th December 2007

The news we so wanted – Luke has 100% donor engraftment which means that the immune system which is emerging is all from the donor – and his old, faulty, immune system is being replaced. This is wonderful news and we are just so pleased and relieved. Luke’s blood counts continue to get better each day, again showing that the new bone marrow is doing its job.

Luke is still eating very little but they have just started to reintroduce a ‘milk type’ feed. He remains in wonderful spirits and wants to be played with or entertained every waking hour. Our favorite game is ‘throw teddy around the room’ which is pretty much what it says. It does give him a work out as such and has improved my catch skills considerably.

Luke still has adenovirus onboard at very low levels but the huge diarrhea we were seeing a week or so ago is slowly, daily, on the way down.

We know that it is still early days but all the signs are good.

Update 9th December 2007

Luke is doing well. It is now clear that the adult stem cells have engrafted and his immunity is slowly returning. His white cell count, hb and platelets are all up and the doctors are very pleased with him. He has shown a clear graft vs. host rash which the doctors wanted to see but now with a steroid dose this has faded.

He does however have adenovirus in his stools (but fortunately not in his blood) which means that he is having regular bouts of extreme diarrhea which is far from pleasant and is giving lots of sleepless nights – particularly for Allison and myself – Luke is able to fall back to sleep immediately.

It is very early days but very encouraging!

Update 23rd November 2007

Yesterday (22nd) was Luke’s bone marrow transplant day. The adult stem cell dose was very high (over twice what was needed) and we will be eternally grateful to the wonderful unknown stranger who has given Luke the potential gift of life. The transfusion (it is NOT an operation!) of the adult stem cells took about 4 hours.

Up to the time of the transplant Luke had been very well indeed with only minor sickness. However because of the volume of stem cells, and the fact that his wonderful donor is a different blood type, he did have a reaction to the transplant (temperatures and vomit) and it is only about 24 hours later that he is starting to get back to his old chirpy self.

So now the wait starts. We would hope to see the first white cells come through in about two week’s time…

Thanks to everyone who has written to Luke so far. He does enjoy getting post so please do drop him a note. His address is:

Luke Hartley

Fox Ward

Great Ormond Street Hospital

Great Ormond Street



Update 8th November 2007

Well it’s just a few short days before Luke goes back up to Great Ormond Street Hospital for his second bone marrow transplant. We have been fortunate to find a new donor and we are reverting back to the same BMT regime that worked so successfully for Joshua, Nathan and Daniel.

Luke remains very well. I’m not sure how many times I have written that but he really has rebounded well since coming home. Indeed in the four months that he has been back from hospital he has not had a temperature or any sign of illness. His blood counts have gradually recovered with his old immune system kicking back in. He is actually positive about going back in – looking forward to see the band of folks that looked after him so well and particularly the clown doctors that visit the ward on Tuesday PM (the highlight of the week). Luke really is an exceptional young man.

We are obviously extremely grateful to this new wonderful person who has agreed to give adult stem cells to help save Luke’s life. And just this morning in my inbox was a great email from the UK’s Anthony Nolan Trust bone marrow registry giving a link to a web site that they have developed to help recruit young men aged 18 to 25. If you are in that category or you know men that are then please forward on. The web URL is

We go into next week very positive that Luke will receive a new immune system that will replace his own XLP faulty one. We know that the transplant procedure and the subsequent recovery is not without risk and so have prepared a specific prayer sheet – if you would like a copy please email me. It will also shortly be available on the web site. We have seen real event changing events that defy explanation happen for each of the boys during their transplants – and are looking for God to continue to walk with us through the valley.

Update 20th September 2007

It now looks like we have a new donor for Luke and we are likely to go back up to GOSH at the start of November – probably meaning a second Christmas in hospital. Luke remains very well indeed although he now has EBV on board at a reasonably high level – he is receiving treatment for this and we are expecting the levels to decrease over the next two weeks. With his brothers now all back at school it is hard to keep him amused. Unfortunately the Hampshire ‘home tutoring system’ doesn’t appear to have kicked in this time and we see no signs of it doing so and therefore we are having to home tutor. With everything else going on this is quite hard.

Thanks for continuing to hold us in your prayers. Over the last few months this has been especially important for us – it has been hard when we thought that we were almost at the end of this journey – we are resigned now to having to go through a fifth bone marrow transplant with all the issues this raises.

Update 11th August 2007

The news is to say just how well Luke remains. He has been home now over 3 weeks and he has been full of life, mischief and fun. He still needs regular platelets, bloods and GCSF (a drug which stimulates the production of white cells) which means regular visits to Southampton General Hospital, but gradually the days are lengthening between transfusions.

We have now had three engraftment results back – with no sign of any donor cells and unfortunately we were told that there was a new overseas donor available but for some reason (which we cannot comprehend) they have decided not to donate…

So the future remains uncertain for Luke but we continue to hold on that we will come through this dark valley.

Thank you for all of your encouraging emails and words since we have been home. We really appreciate them.

Update 19th July 2007

Luke came home last night and it has been a great joy to have him home. He has come back very well and spent some of yesterday evening playing football and bouncing on the trampoline. He is of course still immune suppressed so we have to be very careful and he will require regular visits to Southampton General Hospital for platelets and some other infusions and it will be a considerable time before he is able to mix freely again.

We found out this morning that the second engraftment study taken last week has also come back showing zero donor cells. We now just have to wait and see how things unfold over the coming weeks and months – not easy.

Can we please ask you to continue to encourage your friends (under 40) to join the Anthony Nolan Trust bone marrow registry ( or if you live outside of the UK then your local registry – you can find a full list of registries here (

Please also look to support the essential work we are now undertaking with the XLP Research Trust we set up 20 months ago. We will shortly be announcing the international research projects into XLP we will be funding.

And we are still expecting that God moment for Luke.

Update 12th July 2007

The engraftment result came back late on Monday night and unfortunately showed that the cells which have come back strongly are all from Luke’s old immune system – none from the donor (Nathan). This means that the transplant has failed – Luke is still susceptible to EBV. The consultants believe that the cells from Nathan were too perfect and because of this there was not enough ‘fight’ in them entering Luke body to make them engraft.

This is awful news – after such a long and hard road to get so close to what seems like the end of the valley only to fall flat on our faces at the very last key result… devastating.

But Luke remains very well indeed. He is full of energy and life and it is hoped that he will be home this Saturday. He is now on just one IV drug and assuming he can come off this I will be driving up to London to bring him home early Saturday morning. He will then need to go through the bone marrow recovery process that our other three brave sons have gone through including semi isolation at home but it is expected that his old immune system will come back quickly.

There is still, according to the consultant, a very small chance that some of the donor cells could still emerge but he thinks this highly unlikely. A mixed immune system (old and new) could work perfectly well and would give Luke protection against EBV. The team at GOSH have taken a new engraftment study and we should have the results back on this either late Friday or next Monday.

So now we need a ‘God moment’ – we have seen a number of these as we have battled against XLP but never more so than now. Please pray for this – the prospect of having to go through another transplant is just too daunting at the moment but without seeing a miracle this is what we would need to do.

Update 6th July 2007

Luke is doing very well. Indeed the expectation is that he will be home now the week after next; if not earlier. He will come out of isolation this weekend, which after 38 days in a small room will be brilliant and assuming he stays well, he’ll be back home!

His blood counts have recovered relatively slowly compared to the other boys but they have picked up over the last week and his neutrophils climbed above the magic 0.5 measure today. We are still waiting for the all important engraftment study which will show us what percentage of the new immune system is Nathan’s – we are hoping for 100% (the other 3 boys have all been 100% engrafted) and will now get this late Monday.

Luke is extremely well – full of life, fun and joy…

Update 20th June 2007

Luke remains well with no temperatures (normal for the last 5 days), good blood pressure and virus free. There are early signs that the graft is starting to take hold but the next week is pretty crucial.

Please continue to hold Luke in your prayers as it’s a crucial time.

Update 10th June 2007

Luke’s transplant went very well with a good dosage of bone marrow from Nathan. Nathan was a total hero and although he was in some discomfort immediately afterwards, he is now fighting fit and will be back at school tomorrow.

Luke is doing very well to date although he is now not eating much. Yesterday I shaved his head as he started to pull lumps of it out. He is sleeping reasonably well at night and is extremely polite to everyone who comes into his isolation room.

Unfortunately though, we are back down to one effective carer as Allison now has what looks like the start of a cold.

Thanks to everyone who has sent Luke cards and gifts – they have really lifted him.

Update 5th June 2007

So here we are on the last transplant round. Tomorrow Nathan will travel up to Great Ormond Street Hospital in London with me and on Wednesday morning he will donate some of his own bone marrow to save the life of his brother.

All is going to plan for Luke. He finished his chemotherapy yesterday (Sunday) and has tolerated it well. That being said, he did have a reaction last week to one of his chemo drugs that gave him a seizure. In 15 minutes he was 100% again though and a subsequent CT scan showed no effects on the brain – but obviously very frightening for Allison at the time.

Luke is not enjoying being in isolation. This is partly to do with the extensive hydration that he has just finished (4 days of being hooked up to a machine infusion 100ml of ‘water’ every hour) partly because the chemo is now kicking in and also because he had enjoyed playing with the other boys on the ward who were also allowed out. The chemo is kicking in now – he was sick a little this morning (first time) and will need a blood transfusion today as well – but all is going to plan.

Please pray that this transplant is a success and that Luke is not traumatized by the whole experience – he is very ‘flat’ at the moment.

Update 27th May 2007

Luke is safely at GOSH now and settling in well. He had his central line in on Friday and this went without a hitch. He is not yet in isolation so is spending time wandering the corridor talking with everyone – and has even made friends with a boy the same age via the intercom system (he is in isolation). Luke was very excited on his first evening in and chatted with the nurse who looked after him all through the night… much to Allison’s annoyance (she is currently sleeping with him). All looking good and he tolerated the first course of chemo well today. But early days…

Back home things are not so good. On Thursday on my way to pick up some drugs for the boys I went over the handle bars of my trusty bike and broke my arm. Ironically this is the first time I have ever been to hospital for myself. I’m in a fair amount of pain, but better with the plaster caste. This does mean that I am unlikely to be able to stay with Luke once he goes into isolation (we have to scrub ourselves clean and have new clean clothes once he goes into isolation) and at the moment I would not be able to lift him. Typical! I will be at the fracture clinic this coming Thursday and we are praying for (another) miracle. I’m going up to GOSH for the day tomorrow to take some supplies for Allison…

Update 23rd May 2007

And so tomorrow we start on what we expect to be the last leg of this epic journey through the valley (Psalm 23).

Allison will take Luke up to Great Ormond Street Hospital around lunchtime and after having a central line fitted on Friday he will start chemotherapy on Saturday. Nathan will be traveling up to GOSH to give his bone marrow on the 5th June – Luke will receive it the same day. And then it’s the critical waiting time to see the new immune system start to emerge…

Although this will be our fourth such procedure (sometimes I have to pinch myself about where we are in the walk and how far we have come) we know that there are significant risks involved for Luke. We need to ensure that he (and Allison and myself) stay well and that he doesn’t contract any nasty bugs – particularly during the days immediately before and after his transplant when he will be at his most vulnerable. Please continue to pray for us all – for strength for this last leg and that Luke will quickly be home. If all goes well then we would expect Luke to be back at school around October or November time – this will be the significant event when we will know that we have come through…

Luke is wonderfully well – we played football in the garden last night for what seemed like hours. Despite only being 7 he has a ‘Francis Lee’ type terrier thrust when he has the ball and faces down on goal (those from overseas should goggle ‘Franny Lee’ – the best centre forward I have ever seen in a Man City shirt). Knowing that he is so well has made the timing of Luke going in so much harder. But we also know from our own experience with Joshua, Nathan and Daniel, plus the now hundreds of cases we have now come across because of the XLP Research Trust, that XLP is a devastating time bomb just waiting to go off.

If you could then please do write to Luke. The arrival of the post every day is definitely one of the highlights and brings great cheer. His address will be:

Luke Hartley

Fox Ward

Great Ormond Street Hospital

Great Ormond Street



Update 4th May 2007

The final countdown… It was confirmed yesterday that Luke will go in to start his BMT on Thursday 24th May – less than 3 short weeks away. So the last major hurdle is now in sight…

Update 28th April 2007

We are now on a 2 to 3 week count down for Luke to go up to Great Ormond Street Hospital in London for his BMT. It seems to have taken an age to get there – but we are now at what we hope will be the major hurdle. About 10 days ago we took both boys (Nathan as well – as he will be Luke’s donor) up to GOSH for the standard day of tests. All went well except that when they did the heart echo they found that Luke has a slightly ‘leaky’ valve. This was a big shock but as their advice would be to come back in 2 to 3 years we are now not overtly concerned. Luke remains well and is almost looking forward to go up to GOSH. Indeed he feels the ‘odd one out’ as he has not had a BMT whilst his brothers have… He remains very well indeed.

And this Sunday should be a wonderful day (all of the Hartleys will be there) as we have the first XLP RT Triathlon. We have 27 teams battling it out over a 3.5 mile run, 16 mile cycle ride and a 0.5 mile swim!

Update 23rd March 2007

Luke now has a confirmed admission date to GOSH of the 16th May – we are on a two month count down now. This could slip but we are now formally in the planning process. Luke remains very well.

Update 28th February 2007

Luke’s transplant has been put back to May; he remains very well and full of beans.

Update 16th January 2007

Luke is now booked in for his bone marrow transplant in the middle of March. The big news however is that Nathan will be his donor. The good folks at Great Ormond Street Hospital learnt last week that the donor we were expecting to use is now no longer available – we know no more than this. The consultants at GOSH are ‘not worried’ by this and have already carried out a number of ‘piggy back’ BMT’s. Nathan is delighted that he will have the chance to save the life of his brother! Please continue to pray that the boys stay well as we approach this last hurdle.

Update 30th December 2006

Luke’s transplant has been delayed until March 2007 as he remains so well and there are other children who need a transplant more urgently.

Once again, thank you to our elves, they made christmas that more special.

Update 17th December 2006

Luke is now actively looking forward to his BMT! He is scheduled to go up at the end of January next year and should be in hospital then for two months or so. He remains very well and full of life – and never stops talking – and cannot loose any argument. He will make a great politician.

We have literally just returned from a remarkable holiday in Lapland courtesy of the ‘Make A Wish’ foundation. The highlight for Allison and Dave was riding a team of 7 husky’s each through a snowy forest with the most amazing pink sky – breath taking and truly amazing. Dave also managed to turn a snow mobile over with Allison on the back…

Indeed with things being relatively ‘normal’ in the Hartley household we have also enjoyed a memorable trip to Disneyland Paris and a week on a farm in beautiful Devon.

Update 19th November 2006

Next Sunday and Monday Luke goes up to GOSH to have his PEG inserted. This is to allow us to start him on an overnight ‘milk’ feed to add some weight to him before he goes for his BMT at the end of January.

Update 15th October 2006

We are going to Disneyland Paris soon – this is Luke’s ‘Make A Wish’ wish – he wants to meet Mickey Mouse before his transplant…

Update 21st September 2006

We are still ‘on’ for Luke going for transplant – probably in February next year.

Update 23rd June 2006

Luke remains well. At some point soon we will be firming up with GOSH when he will go in for his BMT.

Update 15th May 2006

Luke remains well and full of talk!

Thanks for your continued support and prayers.

Update 18th March 2006

Luke is well and we took him for his check up at GOSH yesterday. He remains well and EBV free. The plan is still on for him to go to transplant early next year.

Update 18th February 2006

Luke is doing fine. He is keeping well and also started tennis lessons today. It is likely that his transplant will be early next year.

Update 1st February 2006

The plan now is for Luke to have his transplant in early 2007. This assumes that he stays well and it will give us a chance to see Nathan, and Joshua back to something like normality…

For those in the UK please don’t forget to watch Songs of Praise this Sunday (BBC1 – 18:10 GMT) – it should be interesting!

Update 1st January 2006

We are yet unsure as to when Luke will go up for transplant – possibly Q4 next year. Luke will share the same donor as Nathan so we have to wait a year – although we have the ‘luxury’ that Nathan could now become Luke’s donor! He loves his school with a passion, has already broken many hears (he had two marriage proposals in the same day at school) and is into everything (and everyone). He is great fun, a wonderful strong little man and very, very determined.

Update 23rd November 2005

For those that live local to Romsey, this Saturday at 6pm ish we will be turning the Christmas lights on in our home town – a real privilege (although it is likely that there will only be 3 of us there). Come along if you can and also support the XLP Research Trust who will be having a stall in the town hall.

Update 24th October 2005

I (Ian-family friend) have just had a brief telephone discussion with David and he asked me to post a brief update. Nathan has had his transplant and is doing well and has started the process of recovery. Joshua is improving and it is hoped although still has some way to go before he will be able to return home. Unfortunately Daniel has broken his wrist and now has a lovely red plaster on his arm! Please pray for the family, especially both parents as they are finding it a particularly stressful time.

Update 8th July 2005

The events in London yesterday were truly horrific – our hearts and prayers go out to all those affected. Only 24 hours earlier we were driving up to Great Ormond Street Hospital along the road where the bus was bombed and past Great Ormond Street Hospital. And the bone marrow transplant team who look after our sons heard the two blasts.

Luke remains well.

Update 11th June 2005

Nathan and Luke remain well. And Mum and Dad actually managed their first evening out on their own for well over a year. It was a little strange (but very nice as well).

Update 18th March 2005

Nathan’s forthcoming transplant has been put back further to the middle of June. This is because there is a strong chance of a second donor being found and this would help us in terms of Luke’s transplant. At the moment we have one wonderful mystery donor who is a good match for both Nathan and Luke (the boys are identical twins apart from being born 6 years apart). When the ‘definite’ donor gives stem cells if there are not enough for both Nathan and Luke (they would freeze some for Luke) then we would have to wait 12 months before going through the process with the same donor again. If we have confirmed that there is a second donor then Nathan can have all the stem cells from the first donor… Plus it gives us another month to ensure that Daniel is good…

So the roller coaster ride continues.

Update 31st December 2004

The elves and secret Santa’s went down very well in our household(s).

Daniel had a great day at GOSH opening presents and now has more than enough activities to keep him set up before returning home – hopefully in around 2 weeks time.

And Joshua, Nathan and Luke were also really blessed by the torrent of gifts…

We do have some photos and will send on to the elf’s ‘soon’ – with one parent at GOSH and the other at home we are not the best co-ordinated at the moment.

But sincerely ‘thank you’.

Update December 2004

Next Friday we take Nathan and Luke up to GOSH for their regular 6 month clinic so they should be able to see Daniel then. We will be talking dates for the next one…

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Lucy P

14 June 2012

Story written 2006

Lucy was born with very complex congenital heart disease which was diagnosed when she was about 18 hours old. She underwent two open heart surgeries, the first when she was 2 days old and the second when she was about 6 months old. She suffered total heart block as a result of this surgery and had to have a permanent pacemaker implanted a week after the surgery. This was replaced in January 2005.

She had to have major stomach surgery in November 2002 as she suffered from malrotation of the stomach and intestines due to one of her heart conditions. She doesn’t have a spleen either due to this particular heart condition.

Lucy was always supposed to have had a third open heart surgery around the time of her 5th birthday. Alas, this was not to be because her heart would have never been able to cope. She was hence in heart failure.

In September 2005 it was suggested that Lucy be referred to Great Ormond Street Hospital to their heart failure team where her care would be taken over. We were actually referred to the Transplant Team there and went for assessment in December 2005. The Team deemed her suitable for transplantation and she was placed on the Active Transplant List on 16th December awaiting a heart.

Lucy waited a long time for her heart, but during the Summer of 2006 was very lucky to receive the all important call that a suitable heart had become available. She recovered from the surgery very quickly and made a good recovery.

Unfortunately Lucy is back in hospital and will be for at least another 2 weeks, having been there for the last 12 days. Her donor was positive for a virus called cytomegalovirus or CMV as it is more commonly known. She is very poorly at the moment and at the moment we are living day by day awaiting the next set of blood results. The virus levels haven’t been coming down in her blood so she has had to be changed onto a stronger drug which is more toxic. They are having to watch her kidney function as well as checking things like her eyes for damage.

Update 11th February 2008

I think it’s only fair that Lucy moves on from Post Pals. If things change in the future with regard to the high white cells and lymphocytes then I will let you know. There are so many poorly children out there who need the smiles that post can bring to them.

Thank you so much to all of the team and everyone who has written and taken the time to send things to the children. You really have made a difference.

Update 29th January 2008

Lucy’s white cells and lymphocytes are still high. She’s having more physio than she usually has and is going to start hydrotherapy too.

Thank you this month for the birthday card for Alice and the letter for Lucy.

Update 2nd January 2008

Lucy, Alice and Ben would like to thank everyone for all of the lovely letters, cards and gifts that they received over Christmas. They are very, very lucky children.

Update 20th November 2007

Lucy had her annual review back in September. Everything was good, so the Hickman line came out and she had a reduction in her MMF which is one of her immuno suppressants (they halved the dose). CMV hasn’t been detected since May 22nd of this year – day easily remembered because it is Lucy’s big brother’s birthday.

She’s been suffering from a bad cold/cough since the second week in September, surprise surprise, not long after she went back to school. So during the regular blood tests she’s been having, an elevated white cell count had been noted and of course was monitored. It went up to 32 at one stage, coupled with that she’s had quite a high EBV (Epstein Barr Virus) level, which again has been monitored.

We had a phone call from her Transplant Unit asking us to take her up for investigations. They wanted to do a scan and chest xray to look for swollen or enlarged lymph nodes deep within her body. Thankfully none were found. The consultant did mention that he wanted blood films made and if anything untoward was found, he said that a bone marrow biopsy may be necessary. We’ve been beside ourselves with worry as we knew her lymphocytes were high – but then that’s a parent’s job isn’t it?

Anyway, the general consensus of opinion was that it may be her MMF that was causing the irregularities in her blood. She was to have her MMF dose halved again. Blood tests will be done at the beginning of December to check the status of the white cells and lymphocytes. Fingers firmly crossed that it is this that is causing the problem and NOT anything more sinister.

Don’t tell her I’ve told you this because she doesn’t yet know, but she’s not allowed to be ill because we are going to Lapland for 4 days in December… all 7 of us!!! Can’t wait, and certainly can’t wait to see the little ones’ faces when they meet the big man himself. This trip was given to her after her appearance on the Sharon Osbourne Show last year where she was promoting organ donation. Unfortunately she was too ill to take it last December, but the kind travel firm agreed to carry the trip over to this year.

We had a mad dash to A & E with her on Sunday evening. She had been making pretend dollar bills after watching Spongebob with her little sister! Unbeknown to her she had cut the top off her left thumb… with a pair of BLUNT PRESCHOOL SCISSORS of all things. Her daddy is a first aider, so knew exactly what to do, whilst I nearly passed out on the floor! I can do everything else – can watch her be intubated/extubated, watch whilst they try to put a line in etc, but be damned if I can deal with that amount of blood and a nasty looking thumb. The scary thing is that she didn’t even know she’d done it and that it didn’t hurt her at all! After sitting in A & E for half an hour (which is good for them), we’d managed to stem the bleeding with pressure. One of the senior nurses dressed it and told us that we could go, but to get the dressing changed on Thursday of this week.

Thank you to everyone who has continued to send the children cards, because I have been totally rubbish at keeping you updated on how things are going.

Love to everyone xxx

Update 24th April 2007

Lucy is continuing her once daily IV’s and will be for at least another 6 weeks. The CMV is being rather problematic and at the moment everything is very much a case of waiting to see what happens. She is going to Great Ormond Street for a heart biopsy and coronary angioplasty on 18th May. If there is no rejection then her anti-rejection meds may be reduced. If all goes ok with that then they may stop her Foscarnet IV treatment. Hopefully her body will keep the CMV in check, but we have previously found it hasn’t, so no one can be absolutely certain that this will be the case.

Thank you for her lovely parcels that she has been receiving and thank you to whoever sent her the Easter Egg – she won’t eat it!

Update 26th March 2007

Lucy has developed the CMV again. This is her 3rd infection since her transplant last year and it was decided to put a more permanent line in as she is struggling with the amount of needles and cannulas that are needed. She now how a tunnelled line in situ which will probably stay in for a couple of years. She has named it “Mrs Wiggly”. Lucy is part way through another 3 week course of Foscarnet which is bringing the virus levels down nicely. We just hope that we get a reprieve for a while after this latest bout of the virus as we are all totally worn out. As soon as the virus levels are down she needs to go into Great Ormond Street for a heart biopsy (to check for rejection) and a coronary angio (to check whether the CMV is causing narrowing of the coronary arteries). Fingers firmly crossed that these tests reveal nothing sinister.

Thank you to everyone for their kind wishes via email and for her letters, cards and gifts – they are very much appreciated.

Update 2nd February 2007

Just to let you know that Lucy will be in hospital for one more week, so that takes us up to next Friday. Her CMV levels are lower than they were last week, so that is a good sign.

Update 18th January 2007

Lucy has to go back into hospital for more IV’s to clear the CMV as it has gone high again. We are looking at 3 weeks.

Update 30th December 2006

Thank you to everyone for the Christmas cards, especially the reindeer cards!

Update 20th December 2006

Lucy’s virus levels have dropped dramatically – now down to 16,700 which is absolutely brilliant news. Her biopsy date has been changed to 26th January which means that she will be able to enjoy her sister’s birthday party now. She is very much looking forward to Christmas – as are we – and is looking incredibly well. Infact she looks the best we have seen her for a couple of months. We are enjoying every minute of the run up to Christmas.

Thank you to everyone who has been sending Christmas Cards, she has really  enjoyed receiving them.

Merry Christmas to everyone.

Update 10th December 2006

Lucy’s CMV levels are still causing concern. She went to GOSH on Wednesday. The consultant there can’t understand how she can be so well with the levels so high.

She has to go in for a heart biopsy and coronary angioplasty on 5th January.

The CMV can cause early onset of coronary artery disease so thus doing this test whilst she has the biopsy. It would have been checked at her yearly review otherwise.

She has to have regular blood tests done to check the levels and is due back to Southampton on Monday for another. They have put her onto an oral drug, valganciclovir. If this doesn’t work then we are looking at having to go back in for IV’s, which will mean her being in over Christmas. Hoping and keeping fingers crossed that the oral drug works.

Anyway, hope that you are all well and thank you so much for everything that Lucy has received.

Update 30th November 2006

We went back into Southampton General yesterday for a repeat blood test. They are keeping an open mind because it may just have been the results from a rogue sample. The Registrar concerned has instructed us to be back at the hospital today, with a view to admitting Lucy yet again. It’s a blow because she will spend her 7th Birthday in hospital and I had so hoped she would be at home.

Thank you to Kate for the lovely homemade cards and thank you to Becky for the lovely book of poems. Thank you also for the friendship bracelets received.

Update 24th November 2006

After giving her consultant some initial concerns, Lucy had made a good recovery from the CMV and is home now after 4 weeks in hospital. Thankfully the CMV would not have caused her to reject her heart, but the doctors concerned were keeping a close eye because she presented with D & V, so there were worries in the beginning that she wasn’t absorbing her anti rejection medications properly. There is still sign of the virus in her blood, so she is returning to hospital twice a week on a Monday and Thursday to have blood tests to check the levels. Hopefully, with time, the virus level will drop to zero. She is on a drug called valaciclovir and has been since she was transplanted. The dosage has been increased slightly to help bring the level back down.

Lucy would like to say a big thank you to everyone for their lovely cards and best wishes that have been received since she has been in hospital. I would personally like to thank everyone too, especially the people who have thought of Alice and Ben and sent them cards – they both found it really hard having Lucy in hospital this time. Receiving some post themselves really put smiles on their faces! Also thanks to the people who have emailed and have left messages on her guestbook, we will get round to emailing you all individually I promise.

Lucy is due to go back to school soon for the first time since July of this year. It will be just mornings to start with and we shall see how she goes. There is then her birthday to look forward to – one that we didn’t think we would be celebrating this year, but thanks to her Donor and their family we will be and it will be extra special.

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Lauryn A

14 June 2012

Story written 2009

Lauryn was diagnosed with Acute Lymphoblastic Leukaemia in July 2008, 3 weeks after her baby sister was born and 3 days after her 5th birthday.  She was placed on the highest regimen of chemotherapy, as she has been deemed as high risk of relapse, based on bone marrow tests.

Lauryn has coped remarkably well with the chemo and has remained a happy, bubbly, little girl, with a smile on her face throughout, even at her worst. She has endured many infections with the chemo and has been hospitalised countless times.

She is currently being treated for Aspergillus fungal infection, which is a serious infection that makes lesions on the lungs. She also has it in her foot bone which has rendered her unable to walk for many weeks. Under physiotherapy and treatment, she is regaining mobility, but will be treated with an intense course of anti-fungals for a minimum 6 weeks in hospital until the infection clears.

Lauryn is a loving child with a cheerful disposition who would absolutely love to receive post!

Update 22nd December 2010

I think the time has come that we allow other children to have post as Lauryn has now finished treatment and there are other children that are poorly.

I do want to thank you from the bottom of my heart for what you have done for my girls, the post has raised a smile on even the darkest days and for that we are eternally grateful.

THANKYOU to EVERYONE who took the time to write and send gifts to my little girls, it has meant so very very much xxxxx

Update 25th August 2010

Lauryn is currently doing well at the moment, plodding along on chemo but has remained infection and hospital free for some months now… which is a real rarity!! The fungal infection has stabilised and now, after a long year, she no longer requires the IV anti-fungals and although still has to have the liquid, life just got a lot easier!!

We are due to finish chemo treatment at the end of October, so here’s hoping she stays happy and healthy from now on!!

Big thank you to Becca from Cayman Islands, your card was lovely! Also to Sam Booth, Sneha from Switzerland, Natalie Ashton (and Ripple), Christine in Florida, Jazz, Carrie, Jared, 81st Newsome Brownies, the Lawrence Family, The Benn Family, Bethan, Becky from Manchester and so many others!! Thank you to Charlotte Walker, and a HUGE thank you to Mandie Lowry who put so much thought into Lauryn’s gift box. Thanks to everyone who made such a special effort in making and sending her mixed CD’s… they have been the most wonderful gifts… THANK YOU!!

Update 7th May 2010

Lauryn’s last scan showed a slight improvement in the fungal infection though she still has numerous lesions on the lungs still. She will continue daily treatment for another 3 months when she will be re-scanned.

We have had so many emails and letters! Thank you so very much, your generosity knows no bounds and you will never know how happy you make my little girl every time the post is delivered!! Thank you so much for all the gifts since Post Pals was featured on Russell Howards show!! We have been inundated with gifts and wanted to say a HUGE thank you to James Coulson who sent Lauryn a digital photo frame with memory card!! Thank you to Emma Stone who always sends the most wonderful little presents! Thank you for Evie’s (Lauryn’s sister) Alfie Bear… she absolutely loves him!!

Update 10th February 2010

Lauryn has received so much post; we have had to buy extra folders and boxes to keep all of them in!! As always, thank you to Emma Stone who always manages to put a smile on Lauryn’s face with your funny posts! Special thank you to Newport Heights Elementary School whose cards were so lovely! Thank you to Kate Dee, Wendy, and all who send regular post and make such beautiful cards!

Lauryn had a wonderful Christmas and received more gifts this year than ever!! Thank you to everyone who sent gifts, there are too many to mention, in particular the huge Hello Kitty cuddly toy… who has not been left alone since!! Thank you so much Post Pals, all your kindness does not go unnoticed, every gift makes such a difference to Lauryn’s life even if we don’t mention every name!

Update 8th November 2009

Lauryn continues to have daily anti-fungal treatment as a recent scan revealed that the infection has cleared a bit, but still needs a lot of treatment, so it is going to be a long haul! However, she is now at home and the nurse is coming out to us to give her IV’s or we make daily trips to the local hospital if the nurse is unable to.

Thank you so much for all the post and emails, Lauryn is loving receiving post, and runs to the door as soon as the postman comes! Post pals has brightened up Lauryn’s days, she loves Post Pals and reads all the cards, letters and emails, with great interest and excitement! Thank you very much for the beautiful cards, especially the handmade ones that were sent to Lauryn, she has loved looking at all of them. Thank you very much to Emma Stone who also sent pictures of her goldfish bowl with Spongebob figures in there, Lauryn loved that! Thanks also for the stickers! Thank you very much to Post Pals for the Chinese lantern, we set it off on Bonfire night and the whole family was amazed with it!

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Laura H

14 June 2012

N.B. When sending letters/cards or gifts in the post to Laura, please could you put your return address as Laura would like to reply to as many as possible.

Story written 2005

When Laura was born she was listless and bruised. I insisted on Laura being taken upstairs to the Special Care Baby Unit. Laura died on her way up there!! The first of several times.

Laura was put on Oxygen, a drip and had to have various blood tests, scans, etc. to find out what was wrong with her. She was diagnosed with an Overactive Pancreas, which was producing too much Insulin and stripping her blood sugar – HYPOGLYCEAMIA – causing her to fit and lose consciousness.

We were told to prepare for the worst, so Laura was christened in Barnsley District General Hospital. On release we were informed that Laura had a Heart Murmur.

The next 12 months were even more traumatic.

February 95, Laura was diagnosed as having severe Rickets so was admitted to hospital again for further tests.

Nearly 2 weeks later, the day before her first birthday, we came home even though the hospital didn’t want us to.

6th March 1995 the hospital rang to say:

“Can tell you that Laura has a Serious Kidney Problem, it’s called Fanconi Syndrome / Cystinosis, don’t know more than that but go straight to Sheffield Children’s Hospital. There is a bed waiting for Laura as they should be able to treat her as they know more about the illness.”

Within no time Laura was on a regime of medication and overnight feeds via a Nasal Gastric Tube. She also saw the Opthalmic team to check for Cystine crystals in her eyes.

At the end of March Laura came home to wait to go to Nottingham City Hospital to have a Gastrostromy Tube fitted.

Since then Laura has been closely monitored at both Sheffield and Nottingham Hospitals. She goes back now every few months usually 3 or 4 for blood tests and has a bone age X-ray yearly.

She also has regular eye checks. The Hypoglycemic attacks still occur and we are awaiting more tests for that.

The Brain damage has been very slight; Laura is a little clumsy and slightly un-coordinated at times and struggles to fasten buttons or laces but is fine in herself.

She started to eat independently, even though she still didn’t get hunger pangs. It took her 4 months to go from 800mls to nil but she did it! Laura is very determined!  As Laura was maintaining her weight the button was removed.

Unfortunately the site did not heal on its own (it had been there almost 7 years) so in June 2002 Laura went into hospital to have it sealed.

Her last few sets of results have not been too favorable, but having been told upon diagnosis that a KIDNEY TRANSPLANT would be required around 6-10 years (now 10-13 as medication has improved) we take each day as it comes.

Laura does get tired, she has weak muscle tone, asthma, hyper mobility in her joints (gets lots of aches and pains), is short-sighted, has astigmatism (eyeball misshapen) and is photosensitive (due to the cystinosis).



Story update February 2011

Laura’s Renal status has now been changed from Chronic to Severe as her kidney function is 16%


Update 19th March 2012

Firstly I must apologise for the delay in updating. I pushed myself in hospital to get mobile and get home as I really dislike hospital stays. I was allowed home on the 19th August but was told I had to return on Monday and Thursday every week for a few weeks for tests to see how the kidney was coping/working. This changed to Thursdays only in October and then fortnightly in November and now I go every month unless I don’t feel well – start shaking more or have ‘flu type symptoms.

With just a few “blips” and adjustments to the anti-rejection medication, I appear to be doing really well. Unfortunately the medication given has caused me to develop hand tremors which aren’t good seeing as I am studying Sciences at College. I managed to get back to College part-time late September and am still only just building up enough energy to cope with full-time. My work has suffered drastically, despite fantastic support from the College but because of the subjects a few absences soon mean that you miss a major part of the topic. I know my results won’t be good enough to get into my first or second choice Universities, so I have decided to re-take this year and so will sit my ‘A’ levels next summer instead of this.

This decision caused a lot of soul searching as I hate to admit defeat and got myself really stressed out and depressed, but hopefully in the long term it will help me to push on.

I would like to thank everyone who has continued to send me cards, gifts and e-mails, your support has really helped to lift my spirits when I have been at my lowest and for that I am extremely grateful. I am still trying to get round to replying to all of you who have supplied contact details.

As I am now 18, I think it is time to move on so that the younger children who are on this wonderful site can get the post they deserve. Don’t worry, I don’t intend to just disappear, I hope to continue raising money for Post Pals and doing whatever I can to help keep the site going and keep putting a smile on an ill child’s face.


Love from Laura xx

Update 17th August 2011

After the traumatic couple of days when it appeared that the kidney may have been going through acute rejection or just sluggish to work, Laura is now on the mend again. She is up and steadily becoming more mobile. If her blood results continue to improve, to show that the kidney is ok, then she could be allowed home sometime on Friday rather than next week. Once home she has been told that it is usually 2 to 4 weeks away from crowds due to infection as she has limited immunity, so Laura being Laura is determined to be back at College for the start of term. We’ve said we will see.

She also will have to go to QMC at Nottingham twice a week on Monday and Thursday mornings for about 2 – 3 months for blood tests to monitor the function and see if any of the anti-rejection drugs need adjusting. After that it becomes weekly, monthly etc. I know this will cause Laura to stress more due to missing lessons but she will have to cope with it.

Update 13th August 2011

We’ve had a really trying couple of days. Yesterday Laura was in real pain and distress and so scans, x-rays and loads of tests were done, then she was started on anti-rejection drugs.

Today she has had to have a biopsy to rule out rejection. We got the results to say the kidney wasn’t rejecting, it’s just a little sluggish at starting to work independently. She has been given so much fluid to flush the kidney out that she has put on almost 9 kgs, so her heart and lungs had to be checked to see if they were coping.

She seems a lot more comfortable tonight and pain has subsided. In fact she has been up and out of bed and sat up in a chair.

Hopefully we can push on from here – fingers crossed!

Update 10th August 2011

Just to let you know that Laura had her kidney transplant last night/this morning (at 1.30am she went to theatre and at 6.30am she returned to High Dependency Ward). Everything seems to be ok so far. We just need to avoid rejection, so fingers crossed.

Update 18th July 2011

Once again I must start by saying sorry I haven’t updated for a while. I have been busy trying to get everything sorted ready to stop what I’m doing and rush to the hospital once the call comes. I’m trying not to get stressed out and stay positive and focused on things such as trying to look at Universities to go to. I know that my grades won’t be good enough to get to Vet or Medical School, also I have been warned that a transplant may only last up to 5 years so I wouldn’t finish either course, so I have decided to think about something else that is Science related. I now want to study Forensic Science.

My body isn’t producing enough red blood cells, which is causing my anaemia, so two months ago I was put on weekly injections to help as well as continuing with the iron infusions. I go back to the hospital on Thursday so I will find out if they are helping.

Unfortunately my brother, Christopher, can’t be considered as a potential donor now as he was rushed into hospital a couple of months ago with a double pneumothorax (both lungs had collapsed) this time. He is still off work recovering and may have to have an operation to stop it happening again. Bless him; he is so upset as he thinks he has failed me. In fact, he got so upset that he made himself worse worrying about me and in return I was ill trying to get him to stop worrying about me and concentrate on getting himself fit and well. We’ve just been on holiday for a couple of weeks to the East Coast and touch wood both of us seem to have picked up.

College has been difficult as I had to catch up on work missed through illness, which I didn’t fully manage to do but I am hoping that I have done well enough in my exams to continue onto next year – I will find out in August. If not then I will have to retake the year.

I sent off for my driving licence after my birthday but as yet am still waiting for medical clearance.

The fund raising evening went very well and we managed to raise £1010 in total. It was a very good night and everyone seemed to enjoy it – well nearly everyone, dad and his team mates may disagree about that statement!

Once again, thank you to everyone who has sent me mail. Now that College has finished, I am going to try and get round to catching up on replying to it.

Update 23rd February 2011

Laura was put on the transplant list as of 11am this morning.

Update 1st February 2011

Since the previous update in December, I have been back to Nottingham and found that my kidney function has decreased quicker than expected. It is now down to 16% and I have to see the surgeon on the 17th to see if I’m classed as fit enough for surgery and if so I will be put on the transplant list. Hopefully, I will get a transplant within a year of going on the list; however it could take up to 5 years so I would have to go on dialysis in the meantime.

My brother, Christopher, still insists that he would like to be tested to see if he can donate and so the hospital are wanting to check him over to see if he has recovered fully from the spontaneous pneumothorax he had a few years ago. I’m humbled that he wants to do this so I get the chance of a quality and quantity of life but I am also concerned that he is putting his life at risk for mine.

I don’t think I did too well in the exams but have been told not to worry because if I haven’t done well enough I should be able to resit them in June. College are now providing extra help to enable me to keep up with my studies.

Christmas was a quiet affair but an enjoyable one. A big THANK YOU to my Elves. I am in the process of writing to you.

I was rushed into A & E again yesterday as I had chest pains, it hurt to breathe and I had numbness then tingling in my hands and feet. After numerous tests and examinations it appears that I am losing more of my muscle tone as my grip is not as strong as it was (which was poor to start with). I am being put on some more medication to try and help build my muscles back up, or at least stop the break down. I am back home now as all I have been told to do is rest and I said I could do that better at home. Because we only live 10 minutes away from our local hospital they agreed that mum could monitor me at home and if I wasn’t all right she would have to take me back in.

I’m trying to stay as positive as I can and so I am focusing on writing to companies to see if they would be prepared to donate a raffle prize for the Post Pals Fund Raiser that is being put on by friends of ours on the 5th March. It is going to be another Wrestling event, which we are hoping to make an annual one. We have been trying to get companies to donate money so we could buy a wrestling belt to present to the overall winner which he could then take with him to promote the Charity at further wrestling events and then defend the following year. Unfortunately we haven’t had any offers so we are going to settle for a trophy instead.

Thank you to everyone who has and continues to write to me. I am trying to get round to replying but don’t seem to have any free time at present, but I will eventually reply so please be patient.

Update 18th December 2010

Again I would like to start by saying THANK YOU to everyone who has or continues to write/email me. I am behind with my replies due to illness and college work but I am trying to get round to replying to you all, and I really do appreciate your kind words.

Since my last update, I have been back to Nottingham and my thyroid function is apparently ok so the fatigue is still unexplained other than my kidney function is getting worse so that will be making me tired.

I’ve been ill for nearly a month now, spending time ill in bed and also ended up going into hospital. I started with a really bad flu virus which put me in bed for two weeks and then over the weekend started with bad pains in my back across my kidney region. Mum took me into hospital on Monday morning as the pains were so bad. I’m being treated for a severe kidney infection but at first they thought it may have been kidney stones so I had to have a scan done.

I’ve also been back to Nottingham and had more pre-transplant testing done as my function continues to fall and I have been told that I will be going on the transplant list next year but will know more when all the test results come back.

I am seriously stressing about falling behind at college because of being ill and have exams after Christmas when we get back.

I would like to take this opportunity to wish you all the best for the Festive Season.

Update 9th October 2010

I will start by saying Thank You to everyone who continues to send post or has emailed me. I am still working through the replies but my time is taken up by my college studies so please bear with me.

I appear to be a little closer to finding out why I am constantly tired. The new Consultant at Nottingham thinks my thyroid isn’t working correctly so has done some blood tests and I will find out when I go back in November. My kidney function is now down to 20% so I am now on monthly visits to the hospital and will still need iron infusions every other visit. The Consultant is going to see if he can work out a timescale of how long I have before needing a transplant/dialysis. Obviously this will only be a rough estimate but will give us an idea.

I have been in hospital and had laser treatment on erupting ulcers and also treatment on my eyes to flush out and enlarge my tear ducts and also to investigate the cysts. Both my eyes and my stomach are still a little tender but I’m fine. I didn’t think I would manage to get in as I came down with a throat and chest infection the week before the surgery was scheduled, but a course of antibiotics helped so surgery went ahead.

Other than recurrent Labrynthitis, I’m fine at the moment and seem to be coping with college life.

Update 27th August 2010

I would like to start by saying THANK YOU to everyone who has sent post or emailed me. I am now trying very hard to get round to replying to everyone who has included a return address. Unfortunately I have had some lovely letters that didn’t have a return address so I haven’t been able to thank you in person, so I will thank you on here.

I love Russell Howard but he’s caused me a lot of work as I have received at least 200 letters or emails since his programme first aired! JUST JOKING! I think it is amazing how many people are taking the time to contact me and I really appreciate it but do ask that you are patient at getting replies.

I am still waiting to be seen regarding getting diagnosed as to what is causing the fatigue, headaches and dizziness (CFS/ME?). I managed to cope with my exams despite being in pain with my back – I tried to ignore it and coped with strong pain relief and then rest and heat pads when I got home. Having come home crying/worrying after every exam and saying that I had failed I can honestly say that it was a fantastic surprise when I went to get my results on Tuesday and found that I had passed all 12, it still hasn’t sunk in. I have also been to 6th Form College today (27th) and enrolled to take ‘A’ levels starting on the 6th September.

I’ve been back to Nottingham and had another Iron Infusion and have to go back in September. The Consultant I have had all my life has now retired so I have to meet the Doctor taking over from him.

I’ve been back to the Eye Clinic, where they tried to unblock my tear ducts but caught my eyelid as I jumped, and they still want to wait until I go in to get my stomach sorted as they would rather me only have to have one set of anaesthetic rather than two, as each time I go in it carries an increased risk of renal shutdown, which obviously they want to avoid.

I’m still having problems with my stomach and had to ring for advice, the reason I couldn’t get in for further investigation and for them to laser the ulcers was because the Consultant has been away for three weeks with his family and before that we were away on holiday.

I am now under an Open Policy with the Orthopaedic Department as now I have stopped growing they can only keep checking that my bones don’t start to bend again – having said that I am now old enough to be transferred to the Adult Department which is at yet another Hospital.

Thank you to Post Pals for the fantastic pillowcase, Sweet Dreams will really be applicable now! And once again, thank you to everyone who has taken the time to send post, emails and gifts, your kindness is greatly appreciated.

Update 16th May 2010

Sorry for taking so long to update, I’ve been very busy playing catch up with school/course work and now that I’ve done that I am busy revising for and sitting my GCSE exams (2 down, 17 more to do!)

I had a good birthday, thank you to everyone who sent cards and gifts.I’m still struggling with fatigue, headaches and dizziness and have had my annual review with School Health. They are referring me to another specialist to see if we can finally get to the bottom of whether it is CFS/ME – so far everyone has passed comment but done nothing so fingers crossed!

My Kidney function is still stable at 24% and I go back to Nottingham once my exams are over in June to have a further iron infusion.

I had to go to the Emergency Eye Clinic a few weeks ago as both my eyes now have cysts and I couldn’t see properly. They took some photos and swabs, gave me advice (carry on with eye drops) and need me to go in as soon as possible to get treatment (the operation that I’d mentioned previously) – again it will have to wait as exams come first.

I’m still having ongoing problems with my stomach but again that will have to wait – basically I’m going to have a busy summer!

My main problem at present is that I fell awkwardly in a Drama lesson two weeks ago. I’ve bruised the bone around the coccyx area and this has put pressure on my sciatic nerve also causing pain down my leg. Other than taking pain relief (now got to ease off the codeine as it could end up causing me to overdose as my kidneys can’t handle too much) and using heat pads/hot water bottles there isn’t much that can be done other than to try and cope. This isn’t great seeing as I’ve got to sit for a couple of hours at a time for the exams! The Doctor (in A & E) has advised me that it could take weeks/months before the pain subsides and I’m back to being fully mobile.

Many thanks to all who have contacted me by post or e-mail, I am trying to get back to you all but please appreciate that because of the circumstances with my exams it may take a while.

Update 26th February 2010

For the first time in my life I had a Christmas where I was not been ill in bed or hospital. Thank you so much for all the cards and presents I received. Special thanks to my Elves –Kate Dee/Dickinson, Louise and Nicola/ Matt. The gifts were great and I really appreciate the thought gone into choosing them. I will get round to sending you thank you letters – honest.

My health is still up and down but compared to many on this wonderful site I feel I have nothing to complain about. I’m still very tired, dizzy and achy and still can’t get any real diagnosis as to whether this is connected to my underlying condition or whether it is CFS/ME.

I’ve been back to Nottingham and had another iron infusion and been told everything still seems ok – back in March. I’ve seen Eye Specialist again and they still want me in to look at the cyst and now say my tear ducts need to be enlarged as my eyes are watering too much and the water is running down my face instead of draining. I’ve also seen the Consultant Gastroenterologist and he says that he would like me to go in and have further investigations and maybe have any ulcers lasered to stop the pain. I still don’t really want to go into hospital but it looks as if I have to. I have said I will think these two things over as I am very busy at school – I’ve just had my mock GCSE’s and the real ones are in May and I still have work to catch up on, so would need to wait until Summer when normality returns!

The fund raising evening for Post Pals was fantastic, we had a great time (well dad may not agree about that) and raised £513.32. Dad is determined that he has retired now because he has been asked if he wants a rematch so that we can do another fundraiser next year, so it looks like we’ll have to come up with something else.

Many thanks to all who have sent post, I really do appreciate your thoughtfulness and I will try and reply but I am really busy with school work at the moment so getting time to write back is difficult.

Update 26th January 2010

We are holding a Wrestling Event to raise money for Post Pals this Saturday (30th January) here in Barnsley. For one of the matches, Dad has been challenged to a fight against one of the professional wrestlers and he has accepted as it’s for a good cause, despite the fact he has never done anything like this before and being nearly twice the age of the wrestler. I’ve also managed to get some local companies to donate prizes for a raffle so hopefully we will raise a decent amount of money for Post Pals.

Update 4th November 2009

Since my last update I’ve been to Queen’s Medical Centre twice and had iron infusions both times as my red blood cells aren’t being made as quickly as they should. This is due to my kidneys not producing enough of the hormone which produces them and then causes anaemia.

My kidney function appears to be holding at 24%.

I’ve been kept on medication (changed twice to stronger tablets) for the stomach ulcers as the problem with pain and sickness is not going away, so it is looking likely that I have to go in for further investigation (camera down again).

I’ve been back to the eye clinic to see another Specialist as I have a growth on the corner of my right eye which they say is a cyst. They could do with me going into hospital to have it removed or a needle put into it to drain it – neither option appeals to me. I suppose if I have to go back in for my stomach I could see if they can see to my eye at the same time while I’m asleep!

I’ve also had a water/kidney infection and swine ‘flu, thankfully not at the same time. I didn’t end up in hospital with either of these; I just had strong pain relief and antibiotics and slept most of the time. Mum says I was a little delirious with the ‘flu and rambled a little but I can’t remember.

I’m still having problems with tiredness and lethargy and am waiting for the doctors to officially say I have CFS/ME or not, as one set says its possible then another says it’s not. I’m not sleeping quite as much as I was and am managing to cope with school a little more but still have the back up of a Home Tutor.

I’m just feeling a little low and depressed at the moment as I feel that I’m falling behind and can’t catch up with everything. Also, being a teenager, I feel as if I’m missing out on “life” as many of my friends can do so much more than me. My close ones are very good and they try to include me as much as they can, but I feel at times that I’m stopping them from having a good time, so I often tell them to go off and enjoy themselves then sit around and feel sorry for myself. It’s also a very busy year school wise and I’m just getting stressed and that doesn’t help but I’ll pull myself together. I always do, especially now that Christmas is coming, as shopping for family and friends always make me feel better.

Thank you to all who continue to send post, I am sorry I haven’t had chance to reply but being tired all the time and having so much work to catch up on means I don’t have much spare time.

Update 15th August 2009

Last week Laura had hospital trips to the Eye Clinic, to Orthopaedics, and on Thursday she went as an inpatient for an Endoscopy, biopsies and a 24 hour ph test (as she is constantly being sick). Hopefully she will be home on Friday. Next Thursday (20th) we have an Outpatient visit to Queens Medical Center at Nottingham for a renal check-up.

Laura’s endoscopy showed two duodenal ulcers and quite a bit of irritation – probable cause is the H Pylori (Helicobacter pylori) germ. She has to take 3 new medications for at least two weeks and then see if it has helped – 2 types of antibiotics and one to reduce the acid.

She had to have a nasal gastric tube in for 24 hours which was connected to a probe to check her stomach acid levels and has found it very difficult to eat or drink as it felt as if she was going to be sick every time she tried to swallow.

Following her eye appointment, she has got another set of eye drops to use so now has to have 1 drop in each eye hourly if possible, 1 drop in each eye 4 – 6 times per day, and 1 drop in each eye twice a day.

Update 11th July 2009

Sorry Laura’s page hasn’t been updated for a while. She’s been having problems trying to catch up on things as she’s so tired, achy, in pain, and says she can’t focus to concentrate properly. Since October she’s lost 1 1/2 stone in weight through being sick and not really keeping food down (that’s assuming we can tempt her to eat or drink in the first place). As well as being told it could be Chronic Fatigue Syndrome, Laura has been referred to Paediatrics to check her stomach. She has to have an upper gastrointestinal endoscopy (investigation with the camera), biopsies and a 24 hour ph study (under anaesthetic) done next month. This is to confirm/rule out a stomach ulcer. The doctors have said she has an inflamed/irritated stomach which may be bleeding and causing an ulcer and anaemia as her iron levels keep dropping again.

Kidney function still seems to be stable, but with everything else going on Laura is missing a lot of school. We have a Home Tutor for 5 hours per week to try and stop her from falling too far behind. Unfortunately we are quite a bit behind though, so much of the school holidays will consist of catching up with missed coursework to avoid Laura having to drop some of her GCSE’s that she is taking. On top of that we have several hospital visits planned (as well as the above) so as Laura says “My calendar is booked up for the holidays”.

Thank you so much to all who continue to send cards, letters, gifts and e-mails to Laura. It is greatly appreciated and once she feels a little brighter she will try and reply to you.

Update 10th April 2009

I’m still tired even though I can sleep for hours at a time (anything around 12 – 15 hours per day). Doctors now say they think I could be suffering from Chronic Fatigue Syndrome, following Glandular fever sometime last year, as I have been so low, tired, in pain, sick, dizzy etc., since October and don’t seem to be picking up – at least that’s what the latest tests from my stays in hospital suggest (I seem to be in every month or so having collapsed). I’m missing quite a lot of time from school and seeing as I’m in the first year of doing my GCSE’s I really can’t afford to. Thankfully, school are considerate and are trying to organise some home tuition so I don’t fall too far behind.

I’d like to thank everyone for the letters, cards and gifts that continue to be sent to me, especially for all the cards I received for my birthday. I apologise that I haven’t replied to anyone for ages, I’m just too tired, achy and can’t concentrate properly. Please don’t think I’m ungrateful as I really appreciate the time and trouble you all take to write to me.

Update 1st February 2009

Sorry I haven’t updated for a while. Since my last update things have been a little erratic.

I seem to be catching whatever ‘bug’ is going round. I’ve been hospitalised twice, once before Christmas and the other time last week, with stomach bugs as I couldn’t keep water let alone food or medication down. I ended up on drips to help the dehydration.

I think I’m on the mend, although I had to go back to Nottingham as my blood results are all over the place. My anaemia has kicked in again and is leaving my very tried, achy and irritable, so I need another iron infusion. The irritability is because I’m missing lots of school and have already missed exams which count towards my GCSE’s. Fortunately, my teachers have said they will put me in for re-sits.

Sorry that I seem to be moaning especially as compared to some Pals and their families I’m just having ‘teething troubles’. I think it’s just a case of trying to cope at being a ‘normal’ teenager as well as having problems with my health which restrict me from doing everything my friends can.

THANK YOU to my Elves for the lovely presents – loads of make-up and a fluffy dressing gown and soft pyjamas. Also, thank you to everyone else who sent me gifts and letters. I apologise that I haven’t gotten round to writing thank yous to you all yet. I really do appreciate that you take the time to send me notes just to say “Hi” as they make me feel much brighter, especially when I’ve had a bad day and am feeling low. THANK YOU EVERYONE YOU ARE ALL WONDERFUL!

Update 7th November 2008

Laura’s Renal Function at the moment is 24%.

Prof Watson, Laura’s Consultant, thinks that her loss of function may now slow down a little because it appears that Laura has stopped growing. We were told she’d only be 4′ 6″ to 5’ when fully grown but she’s managed to get to 5′ 3″. Apparently puberty (growth spurts) really takes it’s toll on kidney function – Laura’s has come down from 52% to 24% in just under 2 1/2 years, hence the concern. If the decline slows then we could delay a transplant by a year or two (fingers crossed) but if it doesn’t, or she gets more tired and can’t keep up with her schooling, then he’ll bring transplantation forward.

He was talking to Laura and explained to her that missing 1 day of school per week meant that she was missing out on 20% of her education and that obviously he was concerned that:

Missing school = poor or no qualifications = poor or no job = no money = not being able to reach full potential and leave home/bank of mum and dad.

If we/school/he feels that things are on the slide and Laura isn’t maintaining her grades etc, then we can reassess and hopefully bring transplant forward.

He’s been involved with over 200 transplants so I trust his judgment.

Unless anything shows up regarding the results from the bloods taken on Thursday we’re not due to see him again for 4 months (February/March), so fingers crossed.

Other than that Laura has had another up and down month, coming down with one viral infection after another which ended up putting her in hospital on a couple of occasions, but ‘fingers crossed’ she seems to be ok at the moment.

Again many thanks for the post, it is really appreciated.

Update 18th September 2008

Yet again I apologise for the lack of updates. August was a good month health wise, I had a good holiday in Flamborough with my family and then managed to go on shopping and cinema trips with my friends during the rest of the school holidays.

The day before I was due back at school I went to Pleasure Island with a friend and her Mum and banged my right wrist and had to have it splinted up for a week as I had badly sprained it (not great seeing as I’m right handed!).

I’m now in Year 10 (4th year at Senior School for oldies like my parents!) and have just started working towards GCSE’s.

This week has been a bad one. On Monday I had to be at Queens Medical Centre in Nottingham for a full day of tests, scans and talks preparing me for when I need/have either dialysis or a transplant. These included numerous blood tests so they can get my blood group, tissue type, check for any infection (routine for hepatitis and HIV) as well as checking to see if my immune system is ok – that all my immunisations from birth have created antibodies. If not then they would have to be careful as live vaccines cannot be given 3 months before and up to 12 months after a transplant.

I then had to have a radio isotope injected into my system and have blood taken after 2 hours and then 4 further lots at 30 minute intervals. This will be screened and give a very accurate level of kidney function.

In between the taking of blood I had a heart scan to check that I would be “fit enough” for lengthy surgery and spoke to nurses about dialysis and transplant. I’ve quite a lot of reading material to try and digest.

It is usually a case of talking/planning dialysis when kidney function reaches 25% and talking /planning transplant at 15% but it all depends on the individual. Some patients levels suggest they should be on dialysis/facing transplant but seem to have plenty of energy and don’t feel tired or ill and others who have a function of up to 30% can be rather ill and struggle to do everyday things.

Once all the results are back for when I go to clinic in October I will have more of an idea of where things stand. Realistically, it usually takes around 6 months to plan for a transplant so that’s why they’ve started getting prepared. Apparently kidney function does take a nose dive with the onset of puberty which is why my level has halved in the past couple of years.

My Hb was down to 10 again so I also had to have another iron infusion (third in less than a year).

On Tuesday I just felt tired and achy but yesterday I couldn’t stand up and kept getting really dizzy. I had to go into our local hospital so they could check me over. They think I’m coming down with a viral infection but as my body is low it’s knocked me back. The Doctors did a lot more tests and will let me know if anything shows up and I need any medication. I’m back at home now so hopefully in a couple of days I’ll be ok.

I will try and get round to replying to everyone who has written to me, I have quite a few letters to reply to seeing as I’ve been busy lately. Until then I would like to say THANK YOU for thinking of me, your kindness is really appreciated.

Update 14th July 2008

Sorry I haven’t updated for a while. My health has been up and down, mainly down, and I’ve been feeling a little sorry for myself as I have to keep going to various hospitals for tests etc. but having read the updates from some of the pals and their families, I feel guilty moaning.

I had a busy time in June with hospital appointments supposedly to 4 different hospitals – managed some!

I started with a very bad kidney infection on the Friday before going to the hospitals and nearly ended up as an in-patient then.

Monday – Fracture Clinic (Barnsley) said I needed my shoulder pinning but the Doctor there couldn’t do it as he said that as I already had renal failure an operation could push my kidneys into temporary shut down and I may need immediate treatment so he would refer me to Sheffield – where they treat my kidney failure.

Tuesday – went to eye clinic (Hallamshire in Sheffield) but ended up in so much pain I nearly passed out so was rushed round to A & E at the Children’s hospital where I get seen to. I ended up being kept in for the day having blood tests, scans etc. I was eventually allowed home at 10pm with extra strong pain relief.

Wednesday – (Sheff. Children’s) i managed to get to check up for my knees and everything ok. They said not to worry about my shoulder as it normally takes up to 6 months for the injury to heal and not 3 months.

Thursday – I didn’t get to Nottingham as I got home and started throwing up. I don’t think I should have pushed myself to get to Wednesday’s appointment.

Since then my knee has swollen up again (post viral infection) so I couldn’t walk again for a few days. I have had a bad ear infection and couldn’t hear in my left ear, had plenty of migraines and kept vomiting and broke my big toe.

I’ve also managed to get to Nottingham City Hospital to be checked over by Professor Watson – my Renal Consultant, the Dietician, the Psychologist and the Social Worker as its years since I’ve been down there. The Professor visits Sheffield but I’ve now got to be transferred back down to Nottingham as my renal failure is reaching the level where they need to monitor me more and prepare me/us for dialysis/transplant.

A big THANK YOU once again to everyone who has sent me post, especially Amanda and Grace for the books/letters/cards. I am slowly getting round to replying to you.

Update 2nd May 2008

Laura was going to give an update on the 8th April but refused to do so once she had seen the message on Samantha’s page as she felt that her problems were nothing compared to what Sam and her family must be going through. Laura was very annoyed with herself that she was complaining of being “off colour” when others were fighting for their lives.

Laura has been under the weather recently but most of Sunday 6th April she said she felt “wrong”. She wasn’t sure what was wrong but didn’t feel right, felt tired and head achy. As the day wore on she said she felt a bit breathless so had her inhalers but that didn’t really help. Teatime came and I made sure she had food especially sweet stuff as she said she felt “wobbly” which suggested a sugar episode again. By 8.30pm she was in real pain clutching her chest and was catching her breath so I took her straight to hospital. She said her pain score was 9+ out of 10 and she isn’t one to complain but was in tears.

She had various tests done: Chest x-ray is fine, e.c.g. was a little erratic to start with but fine once we’d calmed her down. Blood results show further kidney deterioration and another dip in iron levels 9.9 should be 13.5 so altogether these created the feeling of near collapse. The doctors were brilliant. We were given the option of overnight stay or coming home and monitoring the situation at home so we decided on home – it was almost 2am.

Laura ended up in bed most of the week as she had no energy to do anything and little things like walking upstairs were too tiring for her. On Thursday she got up to go to school but after half an hour of trying to get ready she admitted defeat as she was in pain and felt sick and dizzy.

She had a very restless night on Thursday and kept saying the pain was kept getting worse. She explained it was like someone was pressing down on her chest but every so often they pressed harder and it was like a stabbing pain across her chest and into her back. She eventually fell asleep and woke up about 11am. The pain was still there then it really kicked in so around 2pm we took her back in.

She had another ECG which looked normal, but kept feeling dizzy and nauseous and couldn’t stand for long before almost passing out in pain. A swelling had developed on her breastbone which was where the pain was localised so the doctors were going to x-ray it but the radiographer wouldn’t saying that she had only been done on Sunday/Monday and the sternum is susceptible to radiation and he didn’t feel it was necessary to do it.

We were then passed on to the paediatrics who thought the pain was: acid reflux due to all the medication she takes, thought it was anaemia problems as all the symptoms matched the ones last year, thought it could be related to the shoulder injury as collarbones shapes didn’t match. So the orthopaedics were called and in the meantime we were admitted to the ward.

The orthopaedics thought it could be a trapped nerve somewhere between her shoulder/ neck, spine or even across the breastbone, and wanted x-rays of her cervical spine, shoulder and collarbone. She was kept in overnight as her pain hadn’t subsided with pain relief, which wasn’t surprising considering that everybody had kept poking and prodding her and making her sit up and “perform”.

Needless to say, as most of the doctors knew nothing about Cystinosis, they were more bothered about the history and symptoms of that rather than treating her for the breathlessness. More doctors followed as she started to retch and then run a temperature but they just said keep an eye on her.

Saturday morning orthopaedics said they were certain it wasn’t anything skeletal so it must be muscular pain. Paediatrics followed saying they were convinced that due to the renal problems, which are causing the anaemia, that it’s joint/muscular related. Also, that people with Cystinosis had a tendency to grow boney deposits and one of the areas is around the breastbone. Basically, the pain is to be controlled using whatever pain relief works and we’ve to go to see the doctors at Sheffield as soon as possible so they can sort Laura out.

On Tuesday 22nd April she had another Iron Infusion to see if this will help boost the red blood cells again. We see the renal consultants on 13th May and hopefully we’ll know whether Laura needs regular injections of erythropoietin to help combat the anaemia and also to see if we need to be transferred to Nottingham City Hospital to start planning for dialysis/transplant.

Basically, Laura has had a rough month and has been admitted to A&E twice and had an overnight stay the second time for chest pains and breathing problems. She’s had various tests – E.C.G’s, X-rays and bloods, been seen by various doctors and told that as her kidney function fails, the normal aches and pains she has will increase as her body has to cope with slowing down.

Thank you this month to all those at the Cardmaking Forum for the lovely cards. Thank you so much to the person who sent the autographed photo of David Tennant too – the envelope was all ripped and it came sealed in a plastic bag from the Post Office saying “Sorry this has been damaged in transit”.

Update 2nd April 2008

I went back to A&E on Easter Sunday as I was in lots of pain. I had my shoulder and collarbone x-rayed this time. I’ve not exactly broken it but there is a separation of the ligament holding the shoulder and collarbone together, so it is out of alignment.

I went to see Orthopaedic consultant at Sheffield to see what they could suggest. Apart from pain relief and resting using the sling with occasional exercises to keep the arm mobile, I can’t really do anything. Hopefully it will heal by itself but if it doesn’t within 6 weeks of the injury (about 3 more weeks) then I may have to have the bones pinned back together. Altogether it could be a few months before I’m free of pain and can move my arm fully again – just what I need seeing as my SAT’s are in a few weeks time!

I’ve been for more blood tests today to check on my kidney function/anaemia etc. By the time I go to see the Consultants in May they should have all the information so I will be able to update then.

Thanks to everyone who has sent cards, letters and gifts for my birthday and for Easter. I really appreciate your time and effort doing so. At present I can’t write but am trying to reply as and when, typing one handed, in between catching up on schoolwork and revision.

Hope you all had a good Easter/month.

Update 18th March 2008

I’ve been struggling with constant migraines lately and they have been the abdominal type which has meant I’ve been vomiting as well as having the bad headaches.

I’ve also been very low and in lots of pain again so have spent lots of time in bed sleeping.

My kidney function has decreased again and I’ve got to have some more tests done during the Easter holidays so that the Doctors have all the results in for when I see them in May.

I fell off a wall at school on Friday and have jarred my shoulder. The pain is so bad and I am struggling to move my arm, so at the moment I have to wear a sling to support it. Typically it’s my right arm/shoulder so I’m struggling to write/carry my school bag etc as I’m right handed. I still intend going to school though as I have too much time off due to illness.

I had a great birthday and would like to thank everyone who sent cards and gifts. I will eventually get round to replying to people but I do have a backlog as I’ve had lots of schoolwork to do.

Update 4th January 2008

Thankfully I’ve had a quiet time since coming out of hospital. I’m now walking around virtually pain free and am looking forward to returning to school next week.

I hope everyone has had an enjoyable Christmas and that the New Year is a good one for you all.

Thank you once again to everyone who takes the time to send me post. I am trying to get round to replying to all of you.

An extra special thank you to all who sent gifts, especially my Elves Kate and Emma.

Update 15th December 2007

I’ve had a bad few weeks. I went back to school on 9th November as I had a Science test. Still didn’t feel well and had a sore throat, which turned out to be tonsillitis, so I was off school from the 15th. I went back on the 20th although I still wasn’t 100% and came home saying my legs hurt. Mum thought it was due to the walking around and up and down steps at school. On the 21st I came home limping and in serious pain. My right knee was puffy and very sore. I ended up crying in pain, which isn’t like me. We went to the GP’s the next day and she wanted me to go to A & E at the hospital to see what I’d done. Mum rang the Orthopaedics instead and they said take pain relief and if it got worse to go to Casualty. On Friday I had to go as I couldn’t walk and my knee was twice the size of the other one and the normal painkillers weren’t helping. I had an x-ray and was given codeine to take. I was told to watch for vomiting, rash, headache or unexplained illness, as it could be septicaemia.

They made me an appointment to see the Orthopaedic Doctors at Sheffield Children’s Hospital on Wednesday morning. I didn’t feel very well before we set off, but by the time we got there I was shaking, going hot and cold and being sick, so the Doctor had to admit me. He wasn’t sure if it was an infection in the fluid sack under my kneecap, around the pin site or actually in the bone. I had loads of x-rays, ultrasound, blood, urine and other tests to check for the problem. The Renal team had to be called to check that there was no problem from their side – kidney function has dropped a little with me keeping on being sick. I was kept in for a couple of days then allowed home, but told to rest and take medication to allow the infection to settle and then to go in and have the pins removed.

I’ve just been in and had the pins removed (13th December) and everything went well. I’m still in pain and am struggling to walk unaided, but hopefully I’ll be fine by Christmas.

Thank you to everyone who has written or contacted me, I wish you all a Merry Christmas and a Happy New Year.

Love Laura x

Update 8th November 2007

I had the Iron infusion done on 26th October. My blood pressure and heart rate dropped slightly but I didn’t experience any major reaction to the treatment so was allowed home after resting for a couple of hours after the treatment.

I still feel low and run down; in fact I was sent home yesterday as I went really dizzy and nearly fainted. The GP has given me some more tablets to take and wants me to have further blood tests as he thinks it is still to do with me being anaemic and my kidney illness. If the iron doesn’t help my kidneys produce more red blood cells soon I will have to have regular injections.

Thank you once again to everyone who takes the time to send me post. I am trying to get round to replying to all of you. A big thank you to Jazzy for the letter and Halloween gifts. Thank you also to the girls from Mossneuk Primary School for the cards – you didn’t put a return address on so I can’t reply to you personally.

Update 3rd October 2007

I had more tests done early in September and then I saw the Consultants last week on the 25th. My kidney function is now 30% so I’m classed as now having severe kidney failure.

I have to go into hospital during half-term for an iron infusion (similar to a blood transfusion) to treat the anaemia, as my blood/iron level is still only 9. I still feel tired, achy and generally run down but hopefully this will help.

Thank you to Craig and Daniel for the postcards from Germany (British Forces) and thank you once again to everyone who takes the time to send me post. A big thank you to Kat for the letter and gift despite being ill and struggling to write at the moment.

Update 2nd September 2007

The day after my last update I ended up in A & E for the afternoon as I couldn’t breathe properly, was shaking, my chest hurt, my heart was racing and my arms and legs had gone numb. I had to have oxygen for a couple of hours. At first the Doctors thought I was having an asthma attack combined with a low blood sugar attack. It ended up that I am anaemic, my blood level is 9 and it should be at least 11.5. This caused the trouble as there wasn’t enough oxygen and rich blood getting round my system which caused me to feel so ill. The oxygen really helped and the Doctor said I must eat iron and potassium rich food to help build my blood levels back up or at least until the Renal consultant has checked what medications I can have. I see her at the end of the month but have to go to hospital for some more tests this week.

I’m also looking forward to starting back at school on Tuesday.

Thank you once again to everyone who takes the time to send me post.

Update 14th August 2007

We went away to Flamborough (near Bridlington on the East Coast of Yorkshire) on the 21st July and came back on Saturday.

I have received a quilt from a Mrs L Baldock and am about to send her a thank you letter :o)

Update 2nd July 2007

My health is up and down. Two weeks ago I had tonsillitis and then last week I had awful pains and was diagnosed as having an inflamed gallbladder. The doctor wanted to send me into hospital, but Mum has been ill with Shingles, so he gave me antibiotics and painkillers and said if the pain didn’t ease off over 24 -48 hours then I had to go in. I’m still at home! The pain is still there but no where near as bad. It hurts if I eat or drink certain foods so I’ve got to be careful. If it gets worse again then I will have to go back and go to hospital. Other than that I’m fine.

Thank you to all who continue to send me cards, letters, emails and gifts. I am trying to reply to all who supply an address. Thank you to Kat for the lovely book on decoupage and to Elizabeth for the photo – get well soon! I’m still spreading the word about post pals and have even made a poster and put it up at school.

Update 9th June 2007

April came and went without anything major to report. However, May has been slightly different!

I ended up in hospital for a few days with suspected appendicitis which turned out to be kidney stones.

I’ve seen the Rheumatologist who says I haven’t got Arthritis and the joint and muscle pains I have are due to the following things: my renal complaint – I had severe rickets when diagnosed with Cystinosis, my posture – I’m very flat footed and have no arch to my feet (which is why I wear splints) the hypoglycaemia at birth which caused the fitting and brain damage leaving me with delayed co-ordination and motor skills and balance problems, the slight curvature to my spine – again possibly due to rickets/Cystinosis.

I am still having physio treatment every 2 weeks and have just had a check up with the Renal team and my medicines have been adjusted again.

Thank you to all who continue to send me cards, letters, emails and gifts. I am trying to reply to all who supply an address.

Update 2nd April 2007

I’ve had an up and down month, but shouldn’t grumble as there are many children and adults on here and elsewhere that are worse off than me.

The back and leg pain I have been having is getting worse so I’m seeing the Physio  more often and have been referred to see a Rheumatoid Arthritis Specialist to see what he can suggest.

My birthday went well… I was sent home from school as I couldn’t stop vomiting. This turned to a viral infection.

Thank you to everyone who sent cards and gifts for my birthday, especially Julie and Alan Barrett, Kat R, Kate Dee, Hayley Thorn and yourselves at Post Pals. Sorry if I’ve missed anyone.

Update 24th February 2007

I’ve been for my results and routine check up. There is a slight deterioration in kidney function so we’ve had to adjust the medications and I’m now taking the equivalent of 57 tablets per day, not including pain relief tablets or inhalers.

I’ve also been to the Orthopaedic Specialist; the pins in my knees to strengthen and straighten my legs are helping a little but it hasn’t worked as well as he would have hoped. We are going to give it a little longer though. He has done some X-rays on my spine and thinks the problem is more to do with my hips not being level. He is going to monitor me to make sure things don’t get worse.

Update 8th February 2007

Laura broke 2 toes in an accident at school (going from changing room to dance studio and a heavy door swung shut trapping her foot as they do dance barefoot) Hospital can’t do anything really except give pain relief so she ia hobbling around at present.

She has been for repeat bloods and will get results next week (14th). She also has to see Orthopaedic Surgeon on 21st about her legs, to see if operation has worked and also to check on spine curvature.

Update 3rd January 2007

Laura was ill before and during the Christmas period but as she says that’s nothing compared to what other families have had to go through.

She has physio for help with her back pain on 3rd January and blood and other tests are to be repeated early in the New Year to get to the bottom of this viral infection which is causing problems.

Thank you to Celia my Elf, Kate D for the stocking full of presents, Hayley T, Elizabeth and Jack and everybody else who sent me presents and post. I really appreciate the trouble you have all gone to.

Update 2nd December 2006

Laura has had a good few weeks except for a bad migraine which left her in bed for a few days.

The doctors are pleased with her being able to tolerate her increased medication.

Thank you to Kate (Dee) and Julie and Alan Barrett and Jasmine from Texas who remain in touch.

Update 12th October 2006

Laura has had a nasty viral infection since the middle of September.  It started of as a throat chest infection and has progressed to a kidney infection, having caused an arthritis flare up in between.

Many thanks to Julie Barrett, Kate Dee and Jasmine form Texas, who all regularly keep in touch with Laura.

Update 30th August 2006

Laura’s medication has been increased and she is tolerating it.

Laura has now reached 5ft which she thinks is fantastic as we were warned that she may only reach 4ft 6ins to 5ft fully grown when she was a toddler.

She’s loving watching Dr Who at the moment and reading the books. In fact, she loves anything to do with the programme!

We have mentioned your website on a football forum that we post on and have asked the posters to send a message to any of the pals. Hopefully some of them will.

A big thank you to Julie Barrett for the beautiful needlework horse picture in frame that she sent Laura and thank you to everyone else who have sent things this month.

Update 8th July 2006

Laura has twisted her right knee and has a slight tear in the muscle caused by the pin/screw head cutting into it when she slipped and twisted it on the 28th June. We ended up being in A & E for over 4 hours and had to be seen by the Orthopaedic Surgeons’ Registrar to check the damage. Her knee is heavily bandaged up and she is taking lots of pain relief. She is adamant that she is ok though.

Thank you for your continued support.

Update 31st May 2006

Laura came out of hospital on the 21st April and has slowly been learning to get mobile again.

On 28th April my Mother in Law, Laura’s last surviving Grandparent was rushed into hospital having suffered a heart attack. We were told that there was nothing the Doctors could do as her heart, lungs and kidneys were failing and it was just a matter of time. She managed to hang on until the 19th May when she passed away peacefully in her sleep.

Laura’s body went into shock and she ended up with flu type symptoms of cough, sold, sore throat, dizziness/migraine, sickness and aches and pains. The GP said she must rest to get herself better as she had overdone things trying to get up and about quickly so as not to be a burden on us whilst Gran was so ill.

The funeral took place on Friday and Laura attended – she was determined to go.

Its school holidays now so hopefully she can unwind a little before returning to school.

Update 21st April 2006

Laura has just got in from hospital. The surgeon said the operation was a complete success and doesn’t need to see her for the follow up for another four months. However, she now has to learn to walk again using her crutches. Laura has little upper body strength so is finding this very tiring. Her knees are also still quite painful.

Update 6th April 2006

Laura’s operation has been put back to the 20th April. She went for all her pre-op checks today, it took 3 hours plus and she has to go in on the 19th as she is on the morning list. They have said if all goes well then she will be home on the Saturday.

Update 20th March 2006

Laura is due to go into hospital to have her legs seen to on April 13th.

Laura and family would like to thank everyone who sent birthday cards, gifts and wishes to her.

Update 30th January 2006

Laura was ill all Christmas and new year and then her Gran has been in hospital with heart problems. Both are now ok, although Laura is recovering from flu.

Laura apologises for being late in replying to anyone who has sent letters etc. and an address, but she is slowly getting round to it.

Laura is due at the hospital on Wednesday 1st February, so we will let you know if anything changes.

Update 19th December 2005

On Wednesday Laura saw an Orthopaedic Surgeon about her legs (the bones are turning in at the knees and out at the ankles causing lots of pain; she has had physio etc over the years but has relied on pain relief).

He has said that she has to go into hospital for an operation on both legs to put screws in to realign the bones. Hopefully it will be an overnight stay and then on crutches for a couple of weeks. The screws will be in place for about 9 months. The operation will take place in a few months time – talking about March time.

Obviously she is upset at the news but has said that if it helps to take away some of her pain, then lets get it done.

Thanks for all your support, gifts and letters.

Continue reading...

Kirsty A

14 June 2012

Story written 2005

Kirsty was diagnosed with Neurofibromatosis when she was just eleven weeks old, but was not diagnosed with Scoliosis until she was 8 years old. Scans of the spine showed that Kirsty had a number of tumours on and in the spine itself at the lumbar junction extending well into the sacrum. In March 2000 Kirsty’s spine had curved a further 9 degrees. Doctors decided it was time to try a Boston brace, which she had to wear 23 hours a day. The brace is made out of a very hard plastic, which goes from the top of the chest to below the hips. Doctors told her it would take her 8-10 weeks to get used to wearing the brace for 23 hours but within 3 days she was doing just that – wearing it 23 hours a day. The doctors were really pleased with her.

Kirsty has now been in a brace for 6 years. One of the tumours has started to grow and she has been in a lot of pain. After getting a second opinion doctors decided it was too dangerous to touch any of the tumours and that the risk of paralysis was too high.

Kirsty decided to build a web page to help others which is She is always thinking of others.

She will be going into hospital on the 10th of March 05 for a big op’ on her spine. Kirsty had 3 tumours removed last year, there is no way of stopping the tumours from coming or growing and there is no cure for the Neurofibromatosis (NF).

Update 1st March 2011

I am going to start with the good news this month.

Kirsty’s book is now live and selling well, she did a radio interview last Monday and a couple of papers have covered her story about the book. The royalties from the sale of the book are going to charity and although the book can be bought both in the shops and on line, it is much cheaper to buy it from Kirsty or the publisher. Plus Kirsty can sign copies for people who buy it from her. All you need to do if you want a copy of Kirsty’s book is go to her front page at and click on the buy now button. Three of her doctors have written in the book along with many other people who are involved in Kirsty’s care. Kirsty also gives Post Pals a big mention in her book.

Kirsty’s sickness got really bad again this month and Kirsty ended up back in hospital for a couple of days having to have IV fluids and anti sickness injections. The hypnotherapy is not helping with the sickness.

Kirsty saw the doctor over the operation on her knees this week and after having more x-rays he thinks she may be starting with arthritis in the joints too. He is sending her for another MRI scan so he can see if any of the tumours have grown before they do the surgery. He did not mention anything about the MRSA bug that they keep saying she has.

Kirsty also received a letter to say her spinal doctor wants her to have a full spinal scan done so he can see how the tumours on her spine are progressing.

Let’s finish on some more good news. Kirsty is going to London later this month as she is in the finals for the VInspired award. I will let you know how she gets on.

Thank you for taking the time to think of Kirsty and write to her. Kirsty received a lovely teddy and a package full of gifts this month, which really put a smile on her face as she was having a bad month with her illness.

Update 12th February 2011

Kirsty has asked me to thank you all for your kind words over her book.

She is not so well at the moment with the sickness and a lot of pain in her back. We are not sure if any of the tumours have grown on the spine.

Kirsty see’s her NF doctor on Tuesday who is also bringing another doctor along to see Kirsty.

Kirsty’s book can now be bought from her web page and Kirsty said she will sign copies for people who buy from her web site, but can’t sign the ones bought from the publisher. Every copy sold will grant wishes for other poorly children. Post Pals is mentioned as they have helped her so much over the years. I think Kirsty must be one of the longest members of Post Pals now.

Update 11th February 2011

I have some great news; Kirsty’s book is now on sale, “Kirsty’s story” living with Neurofibromatosis and scoliosis. Kirsty is hoping to raise lots of money for charity by the profits from her book at the same time as helping other people who suffer from these cruel conditions. You can buy the book at the following link

Kirsty is still having a bad time with the sickness and the pain in her back. She sees the doctor who is doing surgery on both her knees so he can explain the implications involved in doing surgery while she has the MRSA bug.

She is still in a lot of pain and is having a fitting for her new back brace this week.

Post Pals is mentioned a lot in Kirsty’s book, as you will read if you buy a copy.

Update 30th January 2011

There is no real change in Kirsty this month. The operation on her knees has been put back yet again as she failed the pre op check again and they are saying she has still got MRSA. The last time I spoke with the lab they said the swab that they do up Kirsty’s nose is the one that keeps coming back positive and that she may never get rid of it. The lab are talking with the doctor next week to see if he will do surgery while she still has the MRSA bug.

The sickness was really bad at the beginning of the month and Kirsty ended up at A&E. They gave her some IV fluid and an injection to stop the sickness.

Kirsty saw her gastro’ doctor last week who decided to put Kirsty on a tablet called Colofac. Colofac is used for IBS, but because Kirsty’s tummy keeps swelling up, the doctor wants to see if these tablets will stop the swelling of her tummy. If you go on Kirsty’s web page ( you can see how bad her tummy keeps swelling (just click on the 2010 link). The doctor wants to see Kirsty again in six weeks.

News on Kirsty’s book is that the book goes live within the next ten days and Kirsty is really excited about this. I will post details so people can buy the book as soon as we have the information. All money raised from the sale of the book will go to charity.

Staff at the university that Kirsty attended put Kirsty forward for the Vinspired award and we have just had news that not only is she a regional winner, but she is now a national award winner and is off to London in March to see if she is to be named the overall winner for the inspirit award.

Thank you to the people who took the time to write to Kirsty this month, Kirsty loves getting your mail.

Update 23rd November 2010

There is no real change in Kirsty this month. The operation on her knees has been put back yet again as she failed the pre op check again and they are saying she has still got MRSA and cannot do surgery on her while she has this bug.

The sickness was really bad this month and we had to take Kirsty into hospital. She was given an anti-sickness injection and put on iv fluid before being allowed home later in the evening.

Kirsty is now going to try hypnotherapy for the sickness. She had her first one yesterday and it’s still early days, but she was really very sick last night.

Work has started on her book this week and she is keeping fingers crossed that it is on sale in time for Christmas.

Her charity spookathon went really well and Craig Gazey who plays Graham in Coronation Street came along and supported Kirsty at the event.

Kirsty has been invited to the Lord Mayors dinner on Thursday for all the fund raising that she does. She went about two years ago to the Lord Mayors Christmas dinner when she won an award and he has now been invited back due to her continued work to help others.

Kirsty said she does not want to take anymore tablets as they are not doing anything to help with sickness or the pain, which I can understand.

I hope you all have a great Christmas and a big thank you to the Post Pals team for all your hard work over the past twelve months.

Update 2nd November 2010

Kirsty’s operation to remove five tumours went well, apart from two of the tumours that gave the surgeon some difficulty, as he did not know until he had started to operate on them that the tumours had also grown deep into the muscle and were much larger than first thought.

Kirsty’s next operation is on the 22nd November but we have just received a call to say that she is still carrying the MRSA bug, which I can’t understand as Kirsty had two MRSA swabs done at different hospitals within 12 hours of each other, and one came back clear the other came back saying she still had the MRSA. So I have got to ring the hospital tomorrow to find out what happens next. This operation has been put back so many times now due to this MRSA.

The sickness is still very much the same but I’m pleased to say it has not got any worse after her recent surgery.

Work starts on her book on the 17th November and we are still looking for it to be out in time for Christmas.

Kirsty’s got her charity spookathon this Saturday and will be staying in a haunted place over night. Many of her ambulance drivers and other people involved in her medical care are doing the event with her, along with some star guests and the Manchester paranormal team. Anyone wanting to support Kirsty on this event can do so by visiting her just giving link on her web page.

Kirsty’s University put her forward for an award and we have just found out that she’s won for the North West and will now go into the finals to see if she will be named the overall winner.

Thank you for thinking of Kirsty and for writing. She received a set of DVD’s from Mari and 2 games from Post Pals too. Thank you so much to both of you.

Update 24th October 2010

Kirsty is home from hospital. They managed to remove five tumours – the ones in her leg and arm had gone deep into the muscles. She is in some discomfort and has been told to rest.

Sending love and hugs to all.

Update 22nd October 2010

Just to say a big thank you to Miriam for the DVD’s that she very kindly sent to Kirsty.

Kirsty is in hospital and will be having surgery Saturday morning to have five tumours removed that have started to grow and are giving her a lot of pain. I will keep you informed on how things go.

Update 6th October 2010

There is no real news as there isn’t any change in Kirsty’s condition.

We had a lovely holiday in Florida, apart from Kirsty’s sickness, which she coped with very well. On the flight home Kirsty was taken poorly, the flight crew had to ask if anyone on board the flight had any medical knowledge. The pilot was going to divert to a different airport but a lady came forward to see to Kirsty. She was unsure if Kirsty had developed a blood clot on her lung and asked the crew if they had any aspirin that she could take to thin her blood out. I was very unsure about Kirsty taking aspirin as she is not meant to take it due to her tummy problem, but this lady said it better for her to the aspirin than not to take it. Kirsty was also put on oxygen for the remainder of the flight home. When we arrived at the airport a paramedic boarded the flight to see to Kirsty before anyone was allowed to get off. He did some blood tests and said her blood sugar was very low and after doing some more tests he arranged for an ambulance to take Kirsty to hospital. The ambulance came right up to the plane and carried Kirsty off. John, Kirsty’s dad, had to go and get the bags and met us at the hospital later. I am pleased to say Kirsty is ok now, it was just very worrying at the time.

Kirsty is going into hospital in the next two weeks to have five tumours removed and then on the 22nd November she is going into hospital for surgery on both her knees. She will be out of action for a good 8 to 12 weeks after the surgery so if anyone has any good DVD’s they can lend her to watch that would be great.

Thank you for all Kirsty’s post, it is really appreciated.

Update 30th August 2010

There’s no real change in Kirsty’s condition, she still continues to be sick most days, which gets her down at times as she cannot go out for a meal with her friends.

We saw Kirsty’s gastro’ doctor this week who confirmed that the last two allergy breath test were clear and that she is not allergic to milk. The doctor is still very concerned that Kirsty is still being so sick and told Kirsty that she must go to the A/E department when the sickness gets bad, but Kirsty said that she feels daft turning up at the A/E department just because she is being sick when people are attending with their fingers hanging off. The doctor explained to Kirsty that with her condition it could be very serious if she got too dehydrated and said that she will write a letter to give to Kirsty that she can take along to the A/E department, if it made her feel any better, to say that Kirsty suffers from gastroparesis and that the doctor requested that Kirsty come to A/E and that the named doctor must be informed that Kirsty is in the A/E department.

The new back brace is helping Kirsty with the back pain.

We also saw the NF doctor this week who thinks that Kirsty’s foot drop may have worsened a little. Kirsty did not have any new NF problems but the NF doctor said it was important that she saw Kirsty at least once every six months.

We should have the date for Kirsty’s book going on sale soon, so keep an eye out in the paper for that.

The operation on her knees will be done when we get back from holiday as the doctor has now said that she cannot fly for six weeks after surgery. I will try and keep you posted when her operation is.

Thanks for taking the time to write to Kirsty and for thinking of her. She received a craft set that will keep her very busy when she goes into hospital later this month.

Update 3rd August 2010

No news really. Kirsty still continues to be sick most days and both the tests that she had this month came back clear. We now see the doctor on the 27th August to find out what happens next.

We have not had the result of her spinal scan yet, but Kirsty has been in a lot of pain with her back. We picked up her new back brace last week, which is helping a little.

We attended the UK fundraiser awards in London as Kirsty was in the final three; she did not win but still had a great time, apart from her having to keep leaving the room as she was being sick.

Kirsty is to see her NF doctor at the end of the month so hopefully she may be able to help with this sickness.

The operation on Kirsty’s knees has now been put back yet again. The doctor said that Kirsty will not be able to fly for six weeks after the surgery and we are going away in September. It looks like the operation will be done when we get back. I will keep you all posted.

Kirsty says; thank you for thinking of me and taking the time to write to me. I received a lovely teddy from a lady called Rose who lives in Co. Down this month. The teddy is about 3 inches tall and holding a mouse. It came with its own little bottle of coke and eaten apple. It really is very sweet and it made me smile when I saw it.

Update 19th July 2010

Just to let you know that Kirsty’s story is in the Weekly News at the moment. You can see a picture of her on the front cover and the date issue is 17th July. You can only buy this issue up to the 22nd July.

Kirsty is doing well but is in hospital for the day on Wednesday having tests for this sickness and again next Tuesday for the day.

Sending love to all the other brave children and a big thank you to everyone who has written to Kirsty over the past few weeks.

Update 4th July 2010

Kirsty is still not having a good time with this continued sickness and has been really poorly this month.

Kirsty is having a hydrogen breath test on the 21st July to investigate whether she has a bacterial overgrowth in her small intestines. Then on the 27th July she goes for a lactose intolerance test. These tests will hopefully help the doctors on which way to help with the sickness.

Kirsty saw the doctor over the tumour in her arm and it was decided that it should be removed along with three other tumours that are growing.

Kirsty’s been in a lot of pain with her back and when she saw the doctor (the one she sees for the pain that she is in) he felt it best if Kirsty has another spinal scan to make sure none of the tumours in her spine have started to grow.

On a good note, Kirsty and I both visited Buckingham Palace last week. The Manchester Evening News arranged for us to travel in a Bentley as it is difficult for Kirsty to travel by train. You can read how Kristy’s day went and see more pictures by going on Kirsty’s web page We are back in London on Monday the 5th July as Kirsty is in the final three to be named the UK Fundraiser of the year. I will let you know how Kirsty gets on.

Kirsty says thank you to everyone for the lovely cards that she received this month, which helped me with another very difficult month. I had many letters this month and I have tried to reply to them all. Also, thank you to all who sent me gifts, I have written to the ones who sent their address.

Update 31st May 2010

Kirsty is still not having a good time with this continued sickness and has been really poorly this month. We have not got the date for the gastric emptying study to be done yet, but hope to have the date soon.

We have got the date for Kirsty to see the doctor for the tumour in her arm, which is giving her a lot of pain at the moment.

Unfortunately, Kirsty’s operation on her knees has been put back yet again as she failed her pre’ op’ and is still carrying the MRSA bug. They cannot do the op’ until Kirsty is well and free of the MRSA bug.

I would like to say a big thank you to everyone who has taken the time to write and send gifts to Kirsty you have all been a big part of Kirsty’s life and have helped put a smile back on her face during some very difficult times.

On a good note, Kirsty and I have been invited to the Queens Garden Party on the 22nd June, which we hope Kirsty will be able to attend. I am just having problems getting Kirsty to London at the moment as Kirsty’s dad is working and going by train maybe a bit difficult for Kirsty if she starts to feel unwell. We will just have to see how things go.

Kirsty says: I had so many cards this month I could not possibly name them all, but I would like thank everyone for the lovely cards that I received, which helped me with another very difficult month. It is really kind of you all to take the time to write to me and the other poorly children on Post Pals. Thank you to everyone who sent me letters and gifts too, I have tried to reply to those who sent their address.

Update 30th April 2010

Kirsty is still not having a good time with this continued sickness. She was at the hospital last Wednesday due to the sickness being so bad and they are now going to do a gastric emptying study. This procedure will be done by the nuclear medicine physician using radioactive chemicals that will measure the speed with which the food empties from Kirsty’s stomach and enters the small intestines. Kirsty also needed some more blood tests doing, which never go down well for Kirsty.

While we were at a family wedding last week, Kirsty took poorly and her tummy swelled up and felt really hard and on the way back to the hostel she started being really sick again. I took a picture of her tummy to show the doctor and he was unsure what was happening. Her tummy went down after a few hours.

Kirsty’s also started having problems with her arm and about three weeks ago she developed a small pea sized tumour under the skin on her arm and now the same tumour has grown and is the size of a conker. It’s not helping that the tumour is in line with the arm hole on her crutches. Kirsty GP had a look at the tumour and said that it needed to be removed and referred Kirsty to the hospital.

Kirsty has also seen the surgeon who is going to do the surgery on her knees. The surgery will be going ahead, but the only way it can be done is by giving Kirsty a general anaesthetic and that she would not be able to have an epidural due to the mess her spine is in.

The pain in her back has been really bad recently and she had to result to wearing her back brace more. I am going to give the spinal doctor a call next week and find out what is happening.

On a good note, Kirsty has been short listed to be named the UK fund raiser of the year and you can read more info about this award on Kirsty’s web page.

It was really nice to see so many new visitors to Post Pals this month; Kirsty received so many emails from people who heard about it on the TV. It was really nice that so many people took the time to visit the Post Pals page and also take the time to write and email the children. Well done to Post Pals, I think we all needed something nice to happen after the month we have had with loosing so many of our brave children in the past few weeks.

Kirsty says: I had so many cards this month and I could not possibly name them all, but I would like thank everyone for their lovely cards which helped me with another very difficult month. It is really kind of you all to take the time to write to me and the other poorly children on Post Pals. I had so many letters this month and I have tried to reply to them all. I received lots of birthday gifts and other gifts too, and again I have tried to write to everyone to say thank you.

Update 7th April 2010

Hi to all my friends. I just want to say a big thank you for all the lovely birthday cards that I have received along with some really lovely gifts. I had been feeling a bit down with this continued sickness and opening all these lovely cards brought a huge smile to my face, as my mum and dad will tell you. Thank you so much for being part of my day.

I hope to have news of when my book is on sale soon and Post Pals is mentioned a lot in it as they have been such a big part of my life too.

With lots of love, Kirsty xx

Update 31st March 2010

Kirsty is still being very sick after having anything to drink and was taken into hospital on Mother’s Day morning as she was really unwell and could keep nothing down. She was given an injection to stop the sickness and was put on a drip to get some much needed fluid back into her. Kirsty is back home now and she is on even more anti sickness tablets, so we will just have to see how things go.

We only saw her grastro doctor a few weeks back, who put Kirsty on another anti sickness tablet that she is to take three times a day. We were not meant to be seeing the gastro doctor until August, but have just received a letter to say that she now wants to see Kirsty in April.

This sickness is really beginning to drain Kirsty now and she is very black under the eyes.

Kirsty sees the doctor over the operation on both her knees this month, so we should be given a date or told what is happening. They are still worried about doing the operation on Kirsty due to this sickness but it needs doing and they want to talk to us both about what happens next.

On a good note, Kirsty’s book should be published and on sale in July. I will let you all know when we have a date. Kirsty’s mentioned Post Pals in her book and how much they have been a big part of her life since she joined in 2005.

Kirsty says; Thank you for the lovely cards that I received this month, which helped me with another very difficult month. It is really kind of you all to take the time to write to me and the other poorly children. Thank you to Sarah, Claire, Becky, Natalie, Wendy, Elizabeth, granny Ruth, Julia, Lisa, Amy and Brooklyn, Maria and Libby. Thank you to Mrs Ball for the lovely letter. My mum received a lovely gift from Elizabeth, which was nice and very kind of her to think of my mum. Elizabeth sent both my mum and me some lavender that she grew in her garden and it smells lovely. I also received some make up and craft sets but I am sorry I could not make the names out to send a thank you card back to them.

This month has been such a bad month for Post Pals as we have lost three very brave children, which was very upsetting for all. I can’t begin to think how their parents must be feeling, all I can do is to let them know we are here for them and always will be.

Update 28th February 2010

Kirsty is still having a difficult time. She is still being very sick after having anything to drink. She saw her gastro’ doctor last week who now wants Kirsty to try another tablet three times a day along side what she is already taking, to see if it will help with the sickness. Kirsty said she is going to try hypnotherapy for the sickness and the doctor said that would be ok, but they want her to have it done at the hospital and not for us to get someone to do it. They are sending her to see the hypnotherapist at the hospital asap. Kirsty said she will try anything now as it is stopping her from doing a lot of things. When we go out she can’t even have a cup of tea or coffee in case she is sick after it. We will just have to see how things go and keep our fingers crossed.

Kirsty is still carrying the MRSA bug so the op’ on her knees cannot take place until she’s had three clear swabs.

Kirsty is having a very difficult time of it at the moment she could do with lots of continued TLC at the moment. She is in a lot of pain and feels worn out with keep being so sick. I really don’t know how she is coping, if I am sick just once I feel bad, but for Kirsty this is something that happens every day and has done for the past ten months.

A big thank you to everyone who took the time to send gifts this month, I know Kirsty wrote to all who included names and addresses.

Kirsty said “Thank you for the lovely cards that I received this month, which helped me with another very difficult month. It is really kind of you all to take the time to write to me and the other poorly children on Post Pals. Thank you to: Tracey, Karen, Kate Dee, Sandra, Becky, Claire, Sarah G, Arlen, Vikie. Thank you for the lovely letters – Clare, Elizabeth, Mrs Ball, Sarah. I also received a really nice craft set from Tracey, a poodle from Becky, Card making kit from Claire, Valentine gift from Poppicraft, and craft set from Arlen.”

Update 30th January 2010

This month as been no different from last month and Kirsty is still being very sick after having anything to drink. The doctor at the Warrington hospital contacted Kirsty’s gastro’ doctor to say that Kirsty had been taken into hospital with dehydration due to sickness again and would they please bring her appointment forward. Her appointment was brought forward by four weeks, which means she will now be seen this month instead of March.

Yesterday, Kirsty saw the neuro’ surgeon over the brain scan results and the good news is that there is no pressure on the brain and they will not need to do any surgery. However, she still needs to be seen by another doctor over the other tumours found on the brain scan so the scan can be compared against the one she had previously and to see if it is safe to leave the tumours found on her optic nerve.

Kirsty also went for her pre op’ check this week to make sure she was fit to have the operation on her knees. Unfortunately they found a problem with her breathing and did a trace of her heart, which showed problems. They said her heart rate was only going at 50 bpm and she was sent for an urgent lung function test, which did not come back with good results. They also spoke about the difficulty of giving a general anesthetic due to Kirsty’s gastro’ problem. They cannot give her an epidural due to how her spine is, so the anesthetist said he wants to make an appointment to see Kirsty and chat about the problems involved. They also tried to get a blood sample incase she needs a blood transfusion (can’t see one being needed) but as we know, Kirsty and needles just don’t go, and after having a few attempts they gave up and said they will try again when she next comes. Kirsty was really upset and both her arms were black and blue from where they tried to put the needles in.

Then this week Kirsty received a call to say that she is carrying the MRSA bug and surgery cannot be done until the bug has been killed. This is done by treating Kirsty’s skin every day over the next three weeks and she must have three clear swabs before surgery can be done. They think she picked the bug up when she was last in hospital. The operation on her knees will not be done until March now at the earliest. The pain in her knees is getting worse by the day and both knees keep giving way after only making a few steps. But even with all this going on Kirsty is still smiling.

Thank you for the lovely cards that I received this month from Claire, Joanne, Sophie, Suzannah, Anna, Wendy, Mrs T Welham, Louise Evens, Juno and Muffin. Thank you to Mrs Ball, Kate, Becky, Michelle, Clare, and Sarah, for the lovely letters.

Update 5th January 2010

We have had another difficult month; Kirsty is still being very sick after having anything to drink and unfortunately was unable to eat her Christmas dinner as she was just being sick all the time.

We received a letter from Kirsty’s spinal doctor to tell us what happened at the spinal scan/x-ray meeting in which her results were reviewed. The doctor told us that Kirsty now has a degree of junctional kyphosis at the top of her metalwork and the scan showed predominately dural ectasia. The doctor is going to send for Kirsty to talk to him more about the results and does not really know what to do next. Having surgery is very risky and could cause even more damage.

Kirsty is going ahead with the surgery on her knees and goes for her pre’ op check on the 19th January. They want to do surgery on both knees, which will put Kirsty out of action for about 8 weeks. They are going to try is an arthroscopic ‘lateral release’ whereby through keyhole surgery the tight lateral structures can be cut to allow the kneecap to sit more centrally. Sometimes this procedure is not enough and needs to be combined with a reinforcement or double breasting (reefing) of the weakened medial structures including some of the quadriceps muscles (VMO advancement). They are not confident that it will work due to the tumours in Kirsty’s knees, but want to give it a try before going on to do a more difficult op’ where they will have to put screws in her knees to make them stable.

We also received a letter over the brain scan that Kirsty had and she is to go see the neuro’ surgeon next week when he is back from holiday. This is very worrying as we don’t know what they plan to do over the tumours found at the back of Kirsty’s eyes, along with some others that were found on the scan.

Kirsty was also back and to the hospital with both her ears being infected and inflamed and had to keep having them vac’ out, if things don’t settle down she may have to go in hospital and go on an antibiotic drip for a few days.

On a good note, Kirsty received lots of lovely gifts from people who have read about her on her Post Pals page. One lady (Wendy) saw that Kirsty was on elbow crutches and bought some really cool blue ones. Kirsty loves them and said they are so much more comfy than the ones that she had. Kirsty would like to say a big thank you to all the following people who sent her gifts over the Christmas holiday: Post Pals, Wendy, Mrs Ball, Sue, Zoe, Lucinda, the Hughes family, Alison and to the ones who never gave their name. Kirsty will write and thank all who gave an address over the next week. You all really made her Christmas to know so many people were thinking of her. Kirsty’s had a bad few months and it does not seem to be getting any better for her at the moment.

My wish for Kirsty is to see her book published this year, it’s her dream and she’s worked so hard putting it together to help others that I would love to see her dream come true and something nice to happen for her for a change. Her book tells of her fight against NF, so if anyone knows of any publishers please let me know and help me make her dream come true.

Update 17th December 2009

We just want to wish all the brave children on Post Pals a very merry Christmas and we hope that 2010 is a much better year for you all.

To all the staff a Post Pals, thank you so much for everything you have done for Kirsty over the last four years, you have made such a big difference to her life over the years she’s been a member of Post Pals (I think Kirsty must be one of her first to join Post Pals that is still with you).

Kirsty still loves getting post and it still helps her cope with another day of pain. Kirsty recently won the Princess Diana Gold Award, if you would like to read more about it you can click on the following link here.

Kirsty is still having a bad time of it at the moment and is in and out of hospital with dehydration due to the continued sickness. I also received a call from the doctor, she was not happy with the brain scan results and Kirsty needs to see a neuro’ surgeon in the New Year when he is back from his holidays. We are going to put it behind us for now and try and enjoy Christmas.

Love and hugs to you all.

Update 29th November 2009

We have had another difficult month; Kirsty is still being sick and was so dehydrated last week that she was rushed into hospital and spent four days on a drip to try and get some fluid back into her.

We were keeping fingers crossed that she would be aloud home in time for her to go to London. Kirsty had won the Princess Diana Gold Award and had been invited to 11 Downing Street along with 9 other young people who had also won the award. The 10 young people had been chosen for the gold award out of 27,000 other young people who had all won the Princess Diana award over the past ten years. The gold award was to mark the 10th Anniversary of the Diana awards. Kirsty won her Diana award back in 2005 and due to her continued charity work she was awarded the gold award.

Kirsty held her spookathon on Friday night where she stayed in a haunted Town Hall over night. Twenty five people involved in Kirsty’s care, nurses, ambulance drivers and physio’s did the event with her. The event was filmed for Channel M and will be on Channel M on Monday. Click the following link to watch the TV interview on the award that Kirsty won and the spook night. The event raised over £1000 with lots of money still to come in. Video here.

The pain in her back is no better and doctors are meant to be having a meeting as when they tried to scan her spine they had problems getting a needle in her arm to inject the contrast dye.Kirsty saw the doctor over her knee problems last week and they have now said to Kirsty that she really needs an operation on both her knees and have given her three weeks to make up her mind.

Her next dream is to see her book published, which tells of her fight against NF, so if anyone knows of any publishers please let me know.

Thank you for the lovely cards that I received this month, which helped me with another very difficult month. I replied to the ones who gave their address, it’s really kind of you all to take the time to write to me and the other poorly children on Post Pals. Thank you for the lovely letters from Mrs Ball, Becky and Sue. My mum received a box of chocolates that she shared with the rest of the family and my mum wants me to pass on her thanks for thinking of her too.

Update 23rd November 2009

Great news, Kirsty came out of hospital at weekend.

We are taking Kirsty to London today as she has won a big award (the Princess Dianna 10th Anniversary Gold Award). Kirsty, along with nine others, have all been invited to Downing Street (look out for her on the news).

She is also getting ready for her big spook night on Friday.

Thank you to everyone who has sent Kirsty letters, cards and gifts, you all really do help put a smile on the faces of these very brave children.

Update 18th November 2009

Kirsty was rushed back into hospital this week with dehydration due to her not being able to keep any fluid down. When we went to see her this evening she had been moved to a different ward. She is still on the drip to try and get some fluid back into her and they also think she may be trying to fight some kind of infection due to her having a high temperature. They x-rayed her tummy and they can see a blockage, which they are also trying to clear up.

Kirsty was very upset last night as they tried seven times to try and get a blood test without success.

We are hoping Kirsty is out for Monday as we are meant to be going to London as Kirsty has won an award. This is for how well she copes with her condition and at the same time raising so much money for other poorly children.

Kirsty could do with some TLC as she is not in one of our local hospitals which is making things hard.

Love to all Post Pals.

Update 1st November 2009

We have had another difficult month; Kirsty is still being sick and has been in a lot of pain with her back.

The London trip was not much help really, the doctor Kirsty saw was really nice but we were under the impression that the reason for going to London was to talk about if Kirsty was suitable for treatment in USA, but the doctor had not even seen any of Kirsty’s scans so could not comment on anything. She wanted Kirsty to think about having spinal surgery at one of the London hospitals but Kirsty is happy with the spinal doctor that she see’s here and does not want anyone else to do the spinal surgery. The pain in her spine is really bad at the moment and her pain doctor has doubled her pain medication to see if they can get on top of it for her.

Kirsty is still being sick but it has been a little better, having said that she is not really drinking anything as it’s when she drinks that she is sick. I was sent a link this week from a lady who had read Kirsty’s web page and she told me about an article that she read where this woman kept being sick and doctors put a pacemaker in her stomach and it stopped her from being sick. It is pioneering treatment which involves a special pacemaker being attached to the stomach. The pacemaker is implanted under the skin, with wires going down into the muscle walls of the stomach. When the patient is eating, gastric activity prompts the pacemaker to send a small electrical impulse to the muscles and the gut contracts helping the stomach to move the foodstuff along the gut.

Kirsty was diagnosed with gatroparesis – paralysis of the stomach – which makes the stomach digest food too slowly or not at all. I am going to mention this treatment to Kirsty’s doctor. The operation costs £10,000 but we should be able to have it done on the NHS. It’s early days yet and due to other health problems that Kirsty has she may not be able to have this treatment.

Her next dream is to see her book published, which tells of her fight against NF, so if anyone knows of any publishers please let me know.

I would like to say a big thank you to everyone who has taken the time to write and send gifts to Kirsty. She says thank you for the lovely cards that were received this month, which helped her with another very difficult month. Thanks to Sarah, Sam, Sarah G, Mrs Ball, Viks and Zoe. Thank you for the lovely letter, Mrs Ball. She also received a paper lantern and is looking forward to lighting the fuse and sending it up to the sky.

Update 29th September 2009

We have had another difficult month; Kirsty is still being sick and has been in a lot of pain with her back.

We have not had any news about the brain scan, which I am looking at as being good news.

Kirsty went for her spine scan last week, she came out of the scan room breaking her heart, I have never seen her so upset for a long while. Apparently the doctor doing the scan said that he needed to inject some contrast dye into her arm – Kirsty told the nurse that I had a tube of the magic cream on me and would they put it on before giving her the injection, so they came and got it from me. Unfortunately, Kirsty’s veins are very poor and tend to collapse every time they go in with a needle. After having five attempts at getting a needle in and each time the same thing happening, Kirsty asked if I could come in the room and hold her hand while they tried again. They refused to come and get me (I was only in the waiting room) saying she would be ok and that they would try in the back of her hand. Kirsty pleaded with them not go in the back of her hand but they did not listen and tried the back of her hand and again the vein just collapsed. All in all they tried eight times to get the needle in without success and her arm is black and blue. They are now going to talk with Kirsty’s spinal doctor and ask if Kirsty really needs a another scan with the contrast dye and if he says he does, then she will have to go on the ward while they try and get a needle in.

We are going to Guy’s in London tomorrow as Kirsty’s NF is so bad internally that her NF doctor over here has asked for a second opinion. There was talk of Kirsty seeing a doctor in the USA as they are doing drug trails to try and shrink the tumours. Kirsty is still being very sick, which I am going to mention to the doctor on Wednesday.

We are going to London by ambulance as it will be more comfortable for Kirsty and she can lie down for the journey.

She fulfilled one of her dreams to attend Uni’ even though the doctors wanted her to take a year out and to get herself well.

Her next dream is to see her book published, which tells of her fight against NF, so if anyone knows of any publishers please let me know.

I would like to say a big thank you to everyone who has taken the time to write and send gifts to Kirsty you have all been a big part of Kirsty’s life and have helped put a smile back on her face during some very difficult times.

Update 12th September 2009

We have had a difficult month; Kirsty is still being sick and has been in a lot of pain with her back.

We took Kirsty over to the USA for two weeks and I forgot to pack one of her important tablets for the pain. We tried to get them posted out to us, but due to what type of pain killer it was, the Embassy said we would not be able to get them posted out to us. So, unfortunately Kirsty was in a lot of pain and she also continued to be very sick every time she had anything to drink. I got a little cross with one of the air stewards as when she saw Kirsty being sick she told her to go to the toilet as people were watching. Kirsty was very upset by the remarks. I went and told her that my daughter was very unwell and was not able to jump up every time she was going to be sick. After I had explained she was very sorry for what she had said to Kirsty, she said she did not know and that Kirsty looked so well. She did go and say sorry to Kirsty for what she had said.

Kirsty had to go for a brain scan the day after we got home and goes for a full spine scan next week. She saw the doctor over her knees just before we went away and they wanted to do surgery on both Kirsty’s knees, but Kirsty was not happy for him to do the surgery. I think she is getting so fed up with having surgery and at the moment they are still talking about removing her stomach and doing more surgery on her spine. It is a very difficult time for her at the moment as she as got so much going on and her health is getting no better.

We have now got the date for Kirsty to see the doctor at Guy’s Hospital in London, which is at the end of September. It should have been at the beginning of September but we are away. Our GP is arranging for Kirsty to travel by ambulance so that she can lie down on the journey.

I would like to say a big thank you to everyone who has taken the time to write and send gifts to Kirsty as you have all been a big part of Kirsty’s life. Thank you for the lovely cards that she received this month, which were hand made and they were beautiful with a lot of work put into making them. Thank you for the letters and thanks to Viks (Post Pals) for the gift.

Update 13th August 2009

I just wanted to say a big thank you for the lovely pillow that I received yesterday. It came just at the right time as I had been at the hospital all morning over the sickness and it was waiting for me when I got in and really cheered me up.

My book is finished now and I have mentioned Post Pals in it and about all the good work you do. I have just got to try and find a publisher to publish it now.

Update 3rd August 2009

We have had a difficult month; Kirsty is still being sick and has been in a lot of pain with her back. I had to move Kirsty in with her gran, as John, her dad, came down with swine flu and we could not take the chance of Kirsty getting it. I have been spending as much time as I can with her, but it has made things very difficult.

Kirsty’s headaches have been getting really bad and her ear infection is not clearing up, so when she went back to our GP last Friday he took a swab of her ear, and to be on the safe side, is arranging for Kirsty to have a brain scan even though she had a brain scan in April. With NF things can change overnight and he does not want to take any chances.

We have now got the date for Kirsty to see the doctor at Guy’s Hospital in London, which is at the end of September. It should have been at the beginning of September but we are away. Our GP is arranging for Kirsty to travel by ambulance so that she can lie down on the journey.

Kirsty is having a very difficult time of it at the moment and must face the prospects of further surgery on her spine, knees, and now her stomach being removed. She could do with lots of continued TLC at the moment. She is in a lot of pain and feels worn out with keep being so sick. This sickness is really beginning to tell on her now.

Thank you for the lovely cards that she received this month, which were hand made and beautiful and a lot of work had gone into making them. Thank you for the lovely letters, which helped me with very difficult month. I would like to thank the people who sent me gifts this month; sorry I could not make the names out though.

Update 30th June 2009

Kirsty is still being sick after having any fluids or anything that is sloppy. The second lot of tablets made things much worse for Kirsty so her doctor stopped them and put her back on the first lot of tablets, which did help a little. Kirsty was very unwell when she went to see her GP last week so her GP is writing to the hospital to have her appointment brought forward and is also arranging for a different doctor to see her as soon as possible.

She is still waiting on a spinal scan and has been in a lot of pain in her back.

Even though Kirsty’s missed so much of her education due to being in hospital and attending hospital weekly, I am pleased to say she passed all her exams gaining Merit, Merit, Merit, which will now allow her to study Radio and TV production.

Thank you to everyone who sent Kirsty post this month, it is much appreciated.

Update 29th June 2009

Kirsty would like to say a big thank you to Becky and Cara for the lovely gifts that she’s received. As always, the gifts and letters that Kirsty receives really make her day.

Unfortunately the second lot of tablets have not helped with Kirsty’s sickness. Our GP as put Kirsty back on the first lot of tablets and is writing to the hospital to say that Kirsty needs her appointment bringing forward urgently. She is also asking for a different doctor to look at Kirsty and if this is not possible, our GP said she will send Kirsty to a different hospital.

She is having a difficult time of it at the moment and it’s looking as though she will have to have her stomach removed. Her spinal doctor is arranging for her to have a MRI scan of the spine so that he can plan how to do the surgery on her spine, which will be a very risky operation if Kirsty decides to go ahead with the surgery.

Post Pals has made a big difference in Kirsty’s life and she is in contact with so many lovely people due to Post Pals. Thank you for helping to keep that lovely smile on Kirsty’s face.

Update 7th June 2009

Kirsty wanted me to thank Becky for the lovely Bunny that she received as it really made her day. Kirsty loves soft toys and when they make a sound it brings a big smile to her face, which is really nice to see.

Kirsty is really having a bad time of it at the moment and has not been able to eat or drink anything for weeks now without being really sick after it. The tablets that the hospital doctor gave her are not helping so can I ask if you will please pray that these next lot of tablets will help, as these tablets are her last chance before they remove her stomach. I have said that I want a second opinion if things are still the same after this next lot of tablets and our GP who is really good agreed and she will arrange for Kirsty to see another doctor.

Thanks again to everyone who takes the time to write to Kirsty, she really is very grateful.

Update 29th May 2009

Kirsty is still being very sick after having any fluids or anything that is sloppy. The gastric test showed that Kirsty has a severe gastric emptying problem. Doctors are trying her on another tablet, which they want her to take for four weeks. If it helps she is to continue taking them for another four weeks and by then she will be seeing the doctor again. If after four weeks these tablets are not helping, she is to try this other tablet for four weeks. If things are still the same after trying these other tablets, the doctor is talking about the possibility that Kirsty will have to have her stomach removed. The doctor said Kirsty has so many tumours in her tummy that it is making things worse and that they could not possibly remove all the tumous.

She is doing well in the back brace and we are now waiting for more MRI scans of her spine before Kirsty decides about another spinal operation.

Kirsty was on Channel M this week talking about her next fund raising event which all her ambulance drivers and other medical staff are getting involved with.

I would like to say a big thank you to everyone who has taken the time to write and send gifts to Kirsty. Kirsty is having a very difficult time of it at the moment and must face the prospects of further surgery on her spine, knees, and now her stomach. She could do with lots of continued TLC at the moment. She is in a lot of pain and feels worn out with being so sick. Thank you for the lovely cards that she received this month, so many of them were hand made and they were beautiful. Also, thank you to everyone who very kindly sent letters and gifts this month. Kirsty has managed to write and thank everyone.

Update 25th May 2009

Kirsty is on the Channel M news on Tuesday talking about her next fund raising event which is a spookathon (staying in a haunted house over night). Many of her ambulance drivers who take her to hospital every week and other medical staff involved in her care are doing it with her.

Kirsty is still being sick everytime she has a drink. We are just hoping that these new tablets will help and that she does not have to have her stomach removed. Her NF doctor is phoning us on Wednesday to have a chat over the tumours that were found in her tummy. Kirsty is not letting any of this last lot of news get her down and is trying to cope the best way she can.

Update 20th May 2009

Well, we are back from the hospital after seeing the doctor for the results of Kirsty’s gastric emptying study. Unfortunately we did not get the news we hopped for.

The doctor said that Kirsty has a severe form of gastric emptying and that the food is not moving as fast as it should, which is why she is being so sick. On top of that they said she has so many tumours in her tummy that they are not sure if any of them are on a particular nerve that is making things worse. They are putting her on Erythromycin for four weeks and if they help she will have to get some more for another four weeks. If things are still the same after four weeks, she is to stop taking them and try this other tablet for another four weeks (can’t remember what it was called). She goes back in 8 weeks and if things are still the same they will try hypnotherapy. If that does not help she may have to have her stomach removed.

They are running out of medication to try, which is why they think the tumours may be making things worse. The NF doctor said that Kirsty has a very severe form of NF internally and that she may be a one off case with her NF being so bad.

So I am a little upset by it all at the moment. I just wish we could get some good news for a change.

Update 30th April 2009

Kirsty is still poorly and spent over four weeks in hospital being very sick. The sickness is no better so she is having a gastric emptying study done tomorrow. The doctors did a scan on her tummy while she was in hospital and found some new tumours in there. Another doctor is going to look to see if any of the new tumours are pressing on a nerve that is making her so sick.

She is now in her new back brace and will continue to wear the brace until it’s decided if surgery on her spine should go ahead.

We also saw the doctor over the tumours in her knees last week and he told us that Kirsty has so many tumours in her knees it would be impossible to try and remove them all. He wants her to have another PET scan done so that he can see the tumours in more detail.

On a good note, Kirsty was nominated for the Young Citizen award by the Rotary club and was one of the five winners. She received her award last Saturday in Edinburgh, which was filmed live on BBC 24. This can be seen again over the Bank Holiday weekend on BBC 24. Kirsty is also in the Woman’s Own Magazine on Tuesday.

I would like to say a big thank you to everyone who has taken the time to write and send gifts to Kirsty. You have all been a big part of Kirsty’s life and have helped put a smile back on her face during some very difficult times.

Kirsty is having a very difficult time of it at the moment and must face the prospects of further surgery on her spine and knees so she could do with lots of continued TLC at the moment. She is in a lot of pain and feels worn out with keep being so sick.

From Kirsty: Thank you for the lovely cards that I received this month as they really do help. I received so many get well, Easter and birthday cards that the postman said his bag was full of my post. Thank you to everyone who took the time to write to me as these letters really helped me over some very difficult times this month. I’d also like to thank everyone who very kindly sent me gifts this month. I received some really nice soft toys, card making sets, cup, Mr egg growing kit, friendship bracelet and other gifts. A big thank you to Post Pals, Becky, Mrs Ball and whoever it was that sent me the other gifts.

Update 23rd April 2009

Kirsty just wanted to say a big thank you for the growing egg which she received. She is going to take a picture when it starts to grow.

Look out for Kirsty on the BBC News tomorrow (Friday) as they came to film her while she was in hospital last week and you may see the birthday or get well card that you sent her. She is also on BBC News at 11.30am on Saturday which goes out live (young citizen awards).

Kirsty is still being very sick so we are just hoping she will be ok.

Update 16th April 2009

Just a quick note to let you all know that Kirsty is now home. She is still being very sick after eating and drinking but has been sent home with more tests to follow in the next week. If things continue she will have to go back in next week.

Look out for Kirsty on the BBC News one day next week as they came into hospital to film her. You may even see one of the cards you have sent her while she’s been in hospital. She is also in the Woman’s Own magazine on the 28th April.

Update 14th April 2009

Kirsty is still in hospital and continues to be very sick after eating and drinking. She is now feeling very worn out by it all and in pain in her tummy and very tired. I have contacted the NF doctor to ask if she can come up with any suggestions as to what is wrong with her, but Kirsty really does not look very well at the moment.

Update 8th April 2009

Kirsty is still in hospital and things are no better. She is still vomiting over a 1000ml a day back.

The MRI scan of the tummy that she had showed more tumours in the tummy than the ultrasound scan showed. We are seeing the doctor tomorrow to talk about what steps to take next. They are also in talks with Kirsty’s NF doctor to see if one of these new tumours may be growing on a nerve that is making her sick.

Kirsty asked me to thank everyone who very kindly sent her birthday cards, birthday gifts and get well cards. You have made her stay in hospital so much easer.

Update 4th April 2009

Kirsty is no better and still being very sick, which means she will be spending her birthday in hospital yet again. She had a brain scan Thursday which was good news as they said nothing found to worry about. The next plan is to do an MRI scan of her tummy on Monday and see if any tumours are growing in the tummy.

It’s Kirsty’s birthday tomorrow. She’s received lots of cards to open from Post Pals and I would like to say thank you to everyone who took the time to send Kirsty a card.

Update 2nd April 2009

Kirsty is no better and is still being very sick after having anything to eat or drink. Kirsty’s consultant came round this afternoon while I was with Kirsty and after seeing how sick Kirsty was still being, she arranged for Kirsty to have a brain scan, which was done within minutes of seeing the doctor. The doctor also wants Kirsty to have an MRI scan of her tummy, which should be tomorrow or early next week. We have not had the results of the brain scan given to us yet.

By the time I had left Kirsty this evening Kirsty had vomited over 1000ml, so this will give you an idea how sick Kirsty is being.

Update 1st April 2009

Kirsty had the ultrasound scan today and the result showed that she had new tumours in the stomach muscle which were 21.1mm, some at 14mm and some at 6mm that were not in the muscle. Her other organs look to be working ok. They don’t think these new tumours are the cause for her being sick.

They will talk about more tests tomorrow. She is still being very sick after eating and drinking. So no change really.

Update 31st March 2009

Kirsty’s having a bad time of it at the moment and is in hospital and not very well. She’s been in hospital two weeks now and there’s no improvement in her condition. She is not keeping any food or fluids down and keeps being sick whatever she has. Doctors did a camera into her tummy yesterday which showed inflammation, so they took a biopsy and are now waiting results. Tomorrow she is having a scan of the tummy and depending on the results the next step is for her to have a brain scan. So it looks like Kirsty will be spending another birthday in hospital.

We saw Kirsty’s spinal doctor at the beginning of the month and unfortunately things have got worse with her spine. She is to go back in the back brace, which we get next week, and her spinal doctor wants Kirsty to think about having further spinal surgery where he will take the rods all the way to the top. This operation comes with many risks as Kirsty’s spine is covered in tumours. He would have to operate from the back and then turn her over and operate from the chest, which would mean moving many of her organs. He wants Kirsty to let him know in May if she will have the surgery.

She also saw a doctor over the tumours in her knee and he feels he can’t do anything to help so wants her to see this other doctor. We go to see them next month.

The doctor in London wants to see Kirsty in person (we hoped she would do a video link) so we’re just waiting on the appointment at the moment.

Kirsty really has had a bad month and could do with lots of hugs.

On a good note, Kirsty was in the Daily Mirror She had a great time having her make-up done and trying on all the different clothes.

Kirsty says thank you for the lovely cards that she received this month and thank you to everyone that who took the time to write to her as it really does help. Thank you to fellow Post Pal Aisha for the lovely card that she sent. Kirsty also received a lovely cushion made by the stitch of love and kindness, a lovely teddy, some finger puppets and a craft set. These items have really helped to cheer Kirsty up while she’s been in hospital and she would like to thank everyone who thought of her.

Update 28th March 2009

Things are no better for Kirsty. She is still in hospital and looks like she will be spending another birthday in there.

Thank you to whoever sent Kirsty the teddy. We all know how much Kirsty likes her soft toys and even more so when they do something. The teddy really cheered her up.

We took her to the hospital shop in her chair to see if she wanted anything and she picked a small cake, but yet again it just came back up.

I will update when we have more news.

Update 24th March 2009

I’m just back from the hospital and things are still the same with Kirsty. She is still being sick and is having a scan of her tummy done tomorrow. They did a scan on her heart today as her BP is really low but that came back ok. They injected a strong anti sickness drug via her drip but even that’s not stopping the sickness.

I will keep you informed of what is going on with Kirsty. Thank you to all who have sent Kirsty good wishes.

Update 22nd March 2009

Kirsty was taken into hospital today. They are running tests and talking about doing a brain scan and camera into the tummy. They have put her on a drip to try and get some fluid into her. She is not very well at the moment and is upset because it’s Mother’s Day.

Update 17th March 2008

Kirsty was in the Daily Mirror today and they did a full page spread centre page. The link is

Update 7th March 2009

Kirsty saw her spinal doctor on Monday and NF doctor on Thursday due to her having some worrying symptoms.

I am sorry to say they did not go our way. The doctor told Kirsty she needs more surgery on her spine, she is back in the back brace to help with the pain and he wants to take the rods all the way up to the top of her spine. There are lots of risks involved due to the amount of tumours on her spine; she has at least one tumour on every nerve on her spine. If Kirsty agrees to have the operation he will have to go in from both her back and turn her over and go in again from the chest, which would mean moving many of her organs. He asked her to think about it and to let him know in May.

On seeing her NF doctor, things were very much the same and she was having a meeting with the doctor in London to talk about Kirsty’s situation. Her NF doctor said in her 25 years of working with NF she’s only seen one other person with so many tumours on their spine and that person was much older.

You can imagine Kirsty could do with lots of Tender Loving Care at the moment. She would like to say thank you to Mrs Ball, Becky Butler and Post Pals for being there for her.

Update 1st February 2009

Kirsty is still attending hospital weekly and we have a busy month ahead with other hospital appointments.

Kirsty’s operation went well and they managed to remove all five of the tumours, but she is still in some pain from the surgery.

I had to take her to the children’s hospital this week to see the doctor over the tumour that is growing behind her knee. It is getting bigger and making it impossible for Kirsty to wear her knee braces without a lot of pain. He said that it was important that she wore them to keep her knees stable and that on the last scan one of the tumours in her knee was over 3.5 cm with lots of small tumours going round it. He’s now decided to send her to see this other doctor as he does not know how best to remove this type of tumour. I just wish he would have done this 16 months ago if he knew then he was not able to do the operation.

Kirsty’s trip to London to film Noel’s HQ went well and if anyone missed it they can still watch it by visiting kirsty’s web page and clicking on the picture of Kirsty with Ricky Whittle. A small clip of Kirsty was also on Noel’s HQ again this week.

Kirsty still needs some TLC as she has got surgery ahead of her and she is worried about her Gran who is also just out of hospital.

I have to take her to see the spinal doctor in a few weeks when we will find out if more surgery will be needed.

Thank you for the lovely cards that I received this month as they really do help. Thanks also to Mrs Ball for her letter. Thank you for the lovely biscuits and large balloon that I received when I came out of hospital, they really cheered me up as I had been in some pain and these made me smile.

I would like to say a big thank you to every one who has taken the time to write and send gifts to Kirsty, you have all been a big part of Kirsty’s life and have helped put a smile back on her face during some very difficult times.

Update 13th January 2009

Kirsty is going to be on Noel’s HQ on Sky1 on Saturday night at 7.30pm (virgin 121, Sky 106 and HD 170). We are going to London on Friday until Sunday so that we can take it easy with Kirsty, as she’s been in a lot of pain with her back, so much so that it’s resulted in having to wear her back brace to try and help with the pain.

She is also in the Sun morning paper either tomorrow, Thursday, Friday or Saturday (they have not given me a date yet, just that it will be one of those days). She is also in the Daily Mail on Saturday i think.

Kirsty goes in to hospital next week for more surgery, but fingers crossed she will only be in overnight. Kirsty could really do with some TLC at the moment.

Update 31st December 2008

Kirsty is still attending hospital weekly, and will be going into hospital on the 20th January for more surgery. She needs to have four tumours removed from her tummy, groin and leg, so she could do with some TLC. We are yet to see the doctor in London and find out if going to the USA will be of any help to Kirsty. NF can be a very cruel condition, as we are finding out with Kirsty, and the older she gets the more she knows about the test, which makes things more difficult. When she was younger she did not really understand what was going on, only that she was in hospital, which she loved at the time.

On a good note, Kirsty won the Community Award and was named the Young Citizen of the Year. She also won an overall runner up award and was given a special Commendation Award. You can see some pictures from the awards night on her web site and for any Hollyoak fans, Kirsty just had a part in Hollyoaks, which will be on screen the end of January. I will try and let you all know when we get the date. You can also see Kirsty on Noel’s HQ, which is on Sky1 on the 17th or 24th January.

Kirsty received some lovely hand made Christmas cards this month and would like to say a big thank you to everyone for taking the time to think of her. You are really kind. Thanks to Mrs Ball and Becky for the letters too. Thank you to Tara her Elf, Mrs Ball, Kate Dee, Becky Butler and Susanna Wild for the lovely gifts that you very kindly sent – Kirsty loved each and every one of them. She has not been well the past few weeks and these gifts really cheered her up, thank you. I hope you all have a great 2009!

I would like to say a big thank you to every one who has taken the time to write and send gifts to Kirsty in 2008. You have all been a big part of Kirsty’s life and have helped put a smile back on her face during some very difficult times.

Update 28th November 2008

Kirsty is still attending hospital weekly and they have now found another problem with her feet which is due to the tumours pressing on the nerves.

Kirsty should be having an operation in December to remove four tumours, but we are hoping they will leave it until after Christmas now.

Kirsty will see our family doctor next week, when she will get the results of the echo scan and the blood test she had last week to see if she is still anemic.

On a good note, Kirsty is in the finals for the Manchester Community Award to be named Manchester’s fund raiser of the year. Please keep your fingers crossed. We find out the result on the 10th December when we attend the awards.

I received some lovely cards from abroad this month and would like to say a big thank you to everyone for taking the time to think of me, you are really kind. Thank you to Becky Butler, all the children at St Matthews Sunday school, and Kate Dee. Thanks also to Viks for the lovely purse.

Hope you all have a great Christmas and a big thank you to the team at Post Pals and to everyone you has kindly taken the time to write or send gifts to Kirsty this year – you really have helped during some very difficult times.

Update 1st November 2008

Kirsty is still attending hospital weekly and on a recent visit to the hospital to see one of her doctors they said she would benefit from having the tumors removed from her tummy, chest wall and top of her leg. This will be done before Christmas.

Kirsty was also getting very tired and more breathless and after seeing our family doctor who ordered blood tests, Kirsty was found to be very anemic and is now on iron tablets. The doctor also wants her to have an echo scan done as her breathing was very fast when the doctor listened to her chest.

At the moment she is looking forward to Christmas and I’m sure santa will be good to her this year as she’s been really good about all her hospital visits and tests that she keeps having.

Thank you for all my post. I received some great DVD’s and CD’s with some other bits and bobs which really cheered me up, but there was no name, so if the person who sent them is reading this, thank you very much as I really loved them.

Update 28th September 2008

Things are still very much the same with Kirsty and September was another very busy month for her with hospital visits. We find out next week if Kirsty will need to have some more tumours removed that are giving her some pain in her tummy.

Thank you to Becky Butler and Mrs Ball for her post.

Update 16th September 2008

Things have got worse for Kirsty. We saw her NF doctor this week and she said that Kirsty’s foot drop had worsened and that every time they scan parts of Kirsty’s body they find more tumours. She also said that in her 20 years of dealing with NF, she has never seen anyone affected so badly internally by it. We now have to take her to see a doctor in London and depending what this doctor says we may have to take her over to the USA to see a doctor. So it is a very worrying time at the moment. Hospital visits are still weekly and she could do with some TLC at the moment.

On a good note, her face is up in lights along Blackpool front as part of the Blackpool lights.

Update 31st July 2008

I’d like to say a big thank you to Becky for the lovely gift and to all who took the time to write and send me cards this month.

I am still attending the hospital weekly as the pain in my back has been really bad. I did do a six week pain treatment course but it did not really help. The doctor thinks one of the screws may have split and moved away from the spine at the top slightly.

On a good note, mum and I spent three days in Washington DC where I was representing the UK in the Huggable Bear Hero Award. I did a photo shoot and will be in the 2009 build a bear calendar in November.

I was also nominated for the Manchester Hero Award by people that had read about me in the press and was one of the 25 winners. This week I also won the Charles Austin Vocational Service Award after I was nominated by the Rotary Club. So it’s been a busy month!

Update 1st July 2008

Things are still very much the same with Kirsty and June was another very busy month for her with hospital visits. The new pain treatment is to continue for a few more weeks but she is still getting a lot of pain in her back.

Kirsty took her driving test last week and passed, so the following day she took her pass plus test and passed that too! She cannot afford a car yet so will not be on the road just yet.

Kirsty and I are going to Washington DC on Tuesday as Kirsty was voted the Huggable Bear Hero Award for the UK. We now have to go to Washington DC for four days in order for her to receive her award and meet the other 11 winners from around the Globe. Kirsty will be doing a photo shoot whilst she is there for the 2009 calendar.

Update 29th May 2008

Things are still very much the same with Kirsty and May was another very busy month for her with hospital visits.

Kirsty’s also had a few falls and had to be taken to the A/E department due to the pain in her back.

Kirsty has now got to start going to the hospital at least twice every week for some new treatment that they want to try for the pain and her physio’ will continue every week too.

She is still enjoying her driving lessons and is taking her test very soon.

Thank you to Becky Butler, Mrs Ball, and also Kate Dee for your lovely letter. Thank you to Post Pals for the recent gifts that I have received – I love my teddy and I will take him with me when I go for my PET scan next week.

Update 30th April 2008

Things are still very much the same with Kirsty and April was a very busy month for her with hospital visits and the surgery that she needed. The operation went well and after spending a couple of days in hospital and two weeks at home recovering, she is now back at college.

Kirsty’s spinal doctor is not sure if one of the screws has split at the top of her spine and this is to be looked into. More tumours have been found in both her knees and she must continue to wear braces on both knees now. Having surgery at this point will only make things worse for her. The doctor wants Kirsty to have her PET scan repeated in June and if there is any change to the tumours we are looking at more surgery.

She still has to attend the hospital weekly and the doctor said that this will continue for a long time yet.

Kirsty was nominated for an award by a member of the public and was recently in the press. She finds out in June if she is one of the winners. She is also up for another award and if she wins she is going to Washington DC for four days to represent the UK.

Thank you to Becky Butler, Kate Dee, Mrs Ball, Julie Barrett, Susanna Wild, Kyle & Erin, Crafting cards forum, Kathleen Brewer and Artist Trading Cards. I received some lovely teddies from Susanna, I love my teddies and even more so when they do something. I also received three lovely balloons from Kate Dee, which incidentally are still going strong. I received so many lovely gifts for my birthday and I would like to thank each and every one of you for taking the time to think of me. It’s been a difficult month with hospital and you have all made the days so much more fun.

Update 31st March 2008

Things are still very much the same with Kirsty. We have got a busy time with hospital visits these next two weeks as Kirsty is going in to hospital on the 8th April for surgery on her foot. She could do with some TLC over the next few weeks as we find out tomorrow if Kirsty will need surgery on both her knees and on Friday we find out if Kirsty will need more surgery on her spine. Kirsty went for her Pre’ Op’ check this morning and they said they are not sure how long she will be in hospital for yet but they are looking at a few days.

Can I ask if you will all keep your fingers crossed as Kirsty? She is taking her driving test on the 5th April, which just happens to be her 18th Birthday too. She wanted to take the test before she had the operation on her foot.

Thank you to all who took the time to send me a card, some of which had been hand made. They really made my day. Thank you to Becky for your lovely letter and thank you to Becky Butler, Kate Dee. Mrs Ball, Julie Barrett, and Susanna wild, I love hearing from you all.

Update 27th February 2008

Things are still very much the same with Kirsty, but she’s been very busy getting ready for her charity Ball, which was on the 16th February. Kirsty had a lot of Television coverage, doing two live TV interviews and one pre recorded television interview along with lots of press coverage to do with the Ball that she had. Kirsty was pleased with how it went and managed to raise over £23,000 on the night. Over 200 guest attended, including boy band Eton Road, Julie (who plays Hayley in corrie’), Rowetta, Mersey beetles and Vince Miller.

Kirsty was really tired by the end of the night and it took her a few days to get over it. Even though Kirsty’s still got a lot going on and we still attend hospital every week, it’s not stopped her from smiling and getting on with life to the full.

Thank you to all who took the time to send me a card, some of which had been hand made. They really made my day. Thank you to Mrs Ball, Becky Butler and Nicole D for your lovely letters and thank you to Becky Butler for the tights that she sent, you were very kind to think of me.

Update 29th January 2008

Kirsty had to see the orthopaedic doctor last week as both her knee’s kept giving way. After the doctor had a good look at both Kirsty’s knees, he was concerned how loose both her kneecaps were and also about some swelling to the back of her knees. He wants Kirsty to have an MRI scan, which she having next week to see what is going on.

Kirsty has also had a lot of pain in her back and this has been getting worse over the past few days, but she will not let me do anything about it as she has got a big charity Valentine Ball in February that she is busy with. She is hoping to raise £65,000 so that she can pay for 100 terminally ill children to visit Santa in Lapland. Kirsty spent the afternoon with a TV crew on Sunday talking about her condition and charity work, which was on the local TV news last night.

Update 3rd January 2008

I received a call on my mobile the Friday after Christmas, it was 7pm and we were on our way to a party and had people in the car so I could not really talk. The doctor asked how Kirsty had been and she then said that she had received a call from the doctor who did the P.E.T scan on Kirsty and that he wanted to do it again. He thinks it may have given some false readings as the day Kirsty had the scan was a cold day and he thinks Kirsty should have it done again so that he can compare the two scans. I mentioned that Kirsty had been for a ultra sound scan of her tummy due to getting pain in her tummy and that they noticed Kirsty had lots of small tumours in her tummy. The doctor then said she knew about the tumours in the tummy as they had been seen on the P.E.T scan too. The doctor wants to see both Kirsty and me when she gets back in February to have a chat about things, so I will know more then.

In the meantime, Kirsty attends the children’s hospital this month over the problem with both her knees giving way on her. Even though Kirsty’s still got a lot going on and we still attend hospital every week, it’s not stopped her from smiling and getting on with life to the full.

Thank you to everyone who took the time to send me such nice gifts, they really helped make my day and reading your letters helped take my mind off some difficult times.

A big thank you to Nicole D (post Pal member), Becky Butler, Mrs Ball, Susanna Wild, Julie Barret and Santa Posty.

Update 29th November 2007

Kirsty had her PET scan and is now awaiting the results. I received a call from Kirsty’s doctor today who asked if I could bring Kirsty in to see her later in the day. When we arrived the doctor called us in and told us that she had received a letter from Kirsty’s physio’ who had been concerned at the amount of falls that Kirsty had been having. On looking at her knee, he felt that there was damage to the ligaments and a lot of swelling to the back of Kirsty’s knee which may be fluid. The physio’ wants her to have a MRI scan done of her knee so the doctor is asking for an orthopedic doctor to have a look and for now she must also wear a brace on both her knees.

Kirsty is to have a scan of her kidney in December to make sure she does not have any tumours on her kidney. They are also worried that she is losing weight.

We received a call asking for Kirsty to come in to hospital for the operation on her foot this week but Kirsty told them she did not want anymore operations before Christmas, as she is taking her driving test in December.

Even though Kirsty’s still got a lot going on and we still attend hospital every week, it’s not stopped her from smiling and getting on with life to the full.

From Kirsty: The team from Post Pals work so hard to put smiles on poorly children’s faces, it’s nice to see Post Pals growing each month with such brave kids. A big thank you to Nicole D (another Post Pal), Kate Dee, Becky Butler, Mrs Ball, Susanna Wild, and the wonderful people who sent me the beautiful quilt, which I have on my bed.

Update 30th October 2007

Kirsty’s not been so well recently and in a lot of pain. Doctors looked at Kirsty and think she may have a tumour on her kidney, so are arranging for her to have an ultrasound scan of her tummy.

The results of the tumours that were removed a few weeks back were not nasty, but the doctor looked at Kirsty’s foot and found a new tumour, which looks to be deep into the bone. She is to have more surgery in the New Year to have this removed as Kirsty is hoping to take her driving test before Christmas and they have said they will leave it until after her driving test.

Thank you to everyone who took the time to send me letters and postcards they really helped make my day and reading your letters helped take my mind off the many hospital visits that I have had. I have made lots of new friends due to Post Pals and it’s nice to see it growing each month. The team from Post Pals work so hard to put a smile on a poorly child’s face, it’s amazing what a knock on the door from the postman can do.

Update 29th September 2007

Kirsty is waiting for a PET scan after doctors found out from her last MRI scan that she now has a number of tumours in her pelvis. If the tumour show to be a grade 3 or above, she will have to see doctor in London and may need further surgery.

From Kirsty: Thank you to everyone who took the time to send me letters, gifts and postcards. They really helped make my day and reading your letters helped take my mind off the many hospital visits that I have had. I have made lots of new friends all over the world due to Post Pals and it has made a big difference to my life.

Update 12th September 2007

Kirsty went for her nerve conduction test and pelvic scan results today. Unfortunately, the nerve conduction test showed that she does have damage to the major nerves that work her legs and feet. This is why she developed the foot drop in both feet and the pelvic scan showed that Kirsty has tumours all around and on the major nerves in the pelvis, so it’s been decided that Kirsty should have a PET scan done. If any of the tumours show up as a grade 3 then it may mean a trip to a hospital in London. Kirsty took the news well, but could do with some TLC over the next few weeks.

The doctor was going to contact a doctor in the USA to tell them about Kirsty and see if she would be ok to take part in the drug trails, but she decided Kirsty should enjoy her time at college at the moment and see how things go with the PET scan.

Update 31st August 2007

Kirsty has just got out of hospital after having four tumours removed and she is doing well with pain control. Kirsty still has to attend hospital at least once a week, but this can be as much as four times in a week. Kirsty is still having problems with her breathing and after seeing the physio’ who commented on her breathing being very fast and there being a problem with her diaphragm not being used correctly, she is going to use a Mediflo Duo, which may help with her breathing. A Mediflo Duo is a dual use incentive spiro meter that can be used for both Sustained Maximal Inspiration (SMI) and Positive Expiratory Pressure (PEP). She has got to try and use this three times a day. Kirsty must also now wear a splint on both her legs/feet, which she’s just been measured for and they should be ready on the 26th September. We will be going for the results of the recent scan she had on the 12th September to find out if she will need more surgery or not.

Post Pals is a great website and has made a difference to my life and made my hospital stays much easier. I’d like to say thank you to Susanna, Becky, Ryan (post pal), Kate, Mrs Ball and any one else who takes the time to write to me and send me kind gifts. They have really helped to cheer me up. I do try and write back to everyone and I’m sorry if I have not got to you. Sometimes people don’t put their name and address on the letters or packages though.

Update 23rd August 2007

Just to let you know that we received a call this morning to say they are bringing Kirsty into hospital on Tuesday 28th August ready for her operation on Wednesday 29th August. We’re not sure how long she will be in for yet, but she could do with some extra TLC.

Update 12th August 2007

A big thank you for the teddies that Susanna form the USA sent to Kirsty. She had not been so well and in a lot of pain when she received this package and they really brightened up her day. Susanna, you are a star!

Update 30th July 2007

Things with Kirsty are very much the same – we still have to go to the hospital up to 3 times a week and tomorrow we find out if Kirsty will need surgery on her lung. We are also waiting on the date for her next surgery, which should be any day.

Thank you to everyone who took the time to send Kirsty letters, gifts and postcards. They really help make her day and reading your letters helps her take her mind off hospital visits.

Update 29th July 2007

Kirsty is doing ok at the moment. We find out on Tuesday if she will need surgery on her lung. We haven’t got the date for her other surgery yet, but we should be hearing very soon.

Update 27th June 2007

Things are no better for Kirsty health wise and she will be going into hospital for more surgery at the end of July or beginning of August. She now has foot drop in both feet and needs to wear a brace on both feet/legs. After having an urgent MRI scan of her spine she was found to have a new cluster of tumours at the bottom of her spine. The doctor then arranged for Kirsty to have a nerve conduction test and after the doctor got the results back from this test, he phoned and said that Kirsty needed an urgent MRI of her pelvic. We go for this tomorrow. Kirsty will also have her lung re x-rayed in July and if the tumour in her lung has grown any bigger, she will need to have part of her lung removed.

On a good note, Kirsty was named the student of the year at her college, won the wellchild award for bravery and is going to have lunch with Prince Harry and Prince William at the weekend.

She now also has her new electric bed after a long delay.

Post Pals has played a big part in Kirsty’s life. She loves receiving post and has made lots of new friends due to post pals. Thanks this month go to Becky, Mrs Ball, Susanna, Kate Dee and Julie.

We tell everyone about post pals and have got many pals interested, so keep up the good work.

Update 27th March 2007

We got the results of Kirsty’s scan and unfortunately she now has a cluster of new tumours on the bottom of her spine, one of which is bigger than what they call the cut off point. The tumour in her neck is growing and causing some concern as is the tumour in her lung. The tumours that are on the bottom of her spine are what have caused the foot to drop. Kirsty’s doctor phoned another doctor to tell her about kirsty and we have got to take Kirsty to see her sometime this week when the doctor is back in the hospital.

Update 1st March 2007

I had the urgent scan done of my lower spine, pelvic and hip area. This is because the doctor suspected that I may have a tumour on my peronel nerve, which has caused foot drop and the reason why I am in so much pain in my lower back and groin. I have also got to go back into hospital to have some tumours removed from my neck, breast and tummy area as these tumours have started to grow.

I have got a film crew coming down to spend a couple of days with me.

Update 21st December 2006

Kirsty had to go to hospital yesterday for physio’ and have her weight checked. Unfortunately they are a little concerned because she’s now lost ½ St since September and must go back on the feeds. I have just been writing the appointments on the calendar for January and already Kirsty’s got 14 and that’s not counting all the extras that she will get during the month. She’s also got the lung function test and endoscope test to have in January. Hope you have a great Christmas and thank you again for all you have done for Kirsty.

Update 31st October 2006

Kay and i were at the hospital for over 5 hours, they were going to keep her in due to this tumour on her lung but decided she can go home on the understanding we go back to the hospital tomorrow. They also ran some urgent blood tests and it depends how the results come back tomorrow as to whether she is kept in or not. She’s also got to have a lung function test done and may need a scan of her lung, which they are not keen on doing due to the rods in her back. Her kidney scan went ok but he said he would like her to have a MRI scan done on them.

Kirsty’s been asked about telling her story in a television documentary and will be in Best magazine around the 28th November.

Update 20th October 2006

Kirsty went for an urgent chest x-ray last Friday due to her getting shortness of breath. We went to see our family doctor today for the results, who told us the results of the x-ray showed that Kirsty has a tumour coming from the top of her right lung and must now go to the chest clinic as soon as we get back from London next week. They also think that she may have some on her kidney, she is still going to the hospital weekly and now more tests must be done to see what happens next.

Update 2nd October 2006

Kirsty’s back has got worse and the surgeon mentioned further surgery, which Kirsty was not happy to have. He also mentioned that some new tumours have grown on the spine and that he wants her to have a bone scan. He is also going to have a meeting with the neurosurgeon to have a talk over how bad kirsty’s spine is. He will talk to Kirsty again after he has spoken with the neurosurgeon and decide what is best to do.

Update 24th June 2006

Kirsty is still attending hospital weekly and on a recent dry land physio assessment, she was told that she also needs a brace on her foot/ankle and we are just waiting on it being fitted.

We see the doctor next week to talk about the possibility of her having both NF1 and NF2. Doctors have also decided that they want Kirsty to have another brain scan.

Kirsty also has her new back brace now, which she got on Friday and it is just as well, as Kirsty and I was both involved in a road traffic accident on a bus. We both had to go to hospital – we both suffered whiplash and are in a lot of pain at the moment. It was a good job Kirsty had her new back brace on, as her injuries could have been a lot worse.

Her weight is staying steady but she has to take the scandishakes everyday.

Thank you to everyone who wrote to wish Kirsty good luck with her exams, it’s been a very stressful time for Kirsty, but she’s great and copes well.

Update 16th May 2006

I still have to attend hospital weekly and sometimes more (everyday last week). I have to go back into the back brace and go for a fitting on Friday, I only have to wear it when the pain is really bad and tablets have not helped.

Some of my doctors think I may have both NF1 and NF2 this is because of the nerve that some of the tumours have grown on and how the tumours look. The doctor told my parents that I must have at least one tumour on every nerve on my spine, some of which are really big. They could operate but the risk of paralysis was very high and even more so after the problems I had last year. So, some tests are going to be done to make sure if I have NF2 as well as NF1 and if I do, there has only ever been about 4 known cases world wide.

Update 8th April 2006

A big thank you to Julie, Kate, Lee, Mrs Ball, Julie, Kersh, Martha, the children who sent me the paper quilt, Becky, Kate Dee, Alan, and Karen for the lovely cards and gifts and everyone who sent me so many e-mails on my birthday. You all really made my day and i will get round to thanking you all.

I am back at the hospital on Wednesday over the tumours on my spine, where i will be told what happens next, all i know at the moment is that this doctor i am seeing looked at the last lot of scans and now wants a word with my parents. I am still getting a lot of pain in the back and still have to attend the hospital every week.

I’m not allowed to do any exercise on my leg for the next three weeks due to the amount of stitches they have put inside the leg and i’m ok with that as i get everyone to bring me my tea and wait on me, which is pretty coooool…

Update 22nd March 2006

Kirsty’s operation is going ahead on Wednesday but they now want her in hospital the day before surgery as they may want to do some more tests beforehand i.e. scan, x-ray and blood test, plus the anaesthetist wants to see her and have a chat too.

She has still got this ear infection that’s not getting any better and she’s now been on four lots of different antibiotics to try and clear it up, but without any luck.

Kirsty is being really brave about everything again but I think she could do with lots of hugs being sent her way. I think Kirsty is being so brave as she doesn’t want to upset me, but I am really worried about this next operation she is having, things just don’t get any easier. We had a letter from a neuro’ surgeon this week saying he wanted to see Kirsty as he had looked at the spinal and brain scan that she had a few weeks ago and wanted to have a chat with us. She should have been going next Wednesday but she can’t with being in hospital,l so I have now had to make it for the 12th April.

Kirsty just said to the doctor yesterday please don’t let me be in hospital for my birthday and they have promised to get her home in time to celebrate her birthday.

Update 12th March 2006

Kirsty is not so well at the moment and as a perforated ear drum, along with a chest infection and is back on antibiotics, the doctor is just hoping she will be ok for this operation at the end of March. She still has to go to the hospital every week and can’t see an end to that just yet.

Update 11th February 2006

Kirsty went for her brain and full spine scan on the 9th February ’06, which was really quick, we only waited just over a week. The doctor who arranged the scan is away until the middle of next week but we received a phone call from his secretary telling us that Kirsty’s doctor will phone us on his return with the results.

The doctor from Sheffield Children’s wants Kirsty to try some new tablets for the pain (Gabapentin), she is going to start them this week while she is off school because there can be some bad side affects with them and we want to keep an eye on her while she is on them.

The operation to remove the three tumours in Kirsty’s leg has been put back to the 29th March ’06, which is better for her as she will be on holiday from school from the 31st March for two weeks. Kirsty still continues to keep being sick and in a lot of pain in her back, we are hoping to get a new spinal mattress for her soon, which will her get a better nights kip.

Update 17th January 2006

We have been given a date for Kirsty going back into Hospital for the operation on her leg, which is the 28th February ’06. Unfortunately the three tumours in her leg have grown again and she is getting more and more pain when trying to walk. We are also back at hospital with her back on the 27th January ’06 to see how things are going with the back. Her physio and doctors at Sheffield want her to have a spinal mattress, which we are looking at trying to get at the moment but they are so expensive.

Kirsty is still being sick and lost some weight on her last weigh in, this is being kept an eye on and Kirsty will be weighed again next week. Hospital visits are still weekly and some times three times a week but Kirsty continues to be very good about it all, which help us cope with it too.

Update 12th January 2006

We are so proud of Kirsty and we wanted to share this news with you as Kirsty as just been named the Pride of Manchester, which made it all the more special with it going to a public vote. You can read more about this award by going on her web Page.

Update 4th January 2006

Kirsty was at Sheffield Children’s Hospital today for a review of her pain. Unfortunately Kirsty was very poorly on the way down to the hospital and kept being very sick. We were with the doctor for three hours, they decided to try a new tablet and some new relaxation exercises and they will see Kirsty again on the 8th Feb’ ’06. At the moment she is still in a lot of pain and it’s so hard to know what we can do to help her.

Update 1st January 2006

Happy New Year to all at Post Pals lets hope it will be a good one.

Update 27th December 2005

Well, you have all kept our postman very busy this year, I don’t think we had a day go by that Kirsty did not have a load of post including some beautiful cards from a school in Japan (Kirsty is busy writing back to them).

A big, big thank you to Kirsty’s Elf for all the lovely gifts she received she was kept busy throughout Christmas day opening all her gifts. Kirsty also had a lovely gift sent her from a lady (Kristen) in the USA whose daughter Ashley sadly passed away earlier in the year and who also suffered from Neurofibromatosis. You can read about Ashley on Kirsty’s web page. Kristen bought Kirsty an electric Bass Guitar with everything to go with it including headphones; Kirsty was in total shock when she opened this gift as she had always wanted a Bass Guitar and is now learning to play it.

Update 14th December 2005

Kirsty went for her physio today and unfortunately Kirsty was still not very well – her physio took one look at her and sent us over to the A&E department. Kirsty’s tummy, legs and hands were so swollen that the physio was very concerned about it. After spending four hours in A&E, the doctor was sure Kirsty did not have any blood clots but was still concerned as to why her tummy was so swollen. The only thing he could come up with was that it may be the new tablets that she has been put on for her pain. He asked to phone her pain doctor and explain whats happened, which we did, and after talking to them it was decided Kirsty should stop taking them as they are not doing anything for the pain anyway.

Update 12th December 2005

Kirsty was asked if she would like to go to Lapland with her brother and of course they both said “yes” and even though Kirsty took poorly and had to get a doctor to see to her, they both managed to have a brilliant time.

Update November 2005

Not much change really, we are still having to take Kirsty to the hospital weekly for physio’ in the hydro’ pool. Kirsty has put some weight on, which was good news but the dietician thinks it’s down to the Scandishake, which are high in supplements, protein and calories. Kirsty is still not managing to eat a great deal and still keeps being very sick.

Update 19th October 2005

Kirsty is doing ok but is still going to the hospital every week, she had lost a little bit of weight today when we went, but she had been very sick for few days so we have got to have it checked again in two weeks. We have also had a phone call from Sheffield Children’s Hospital they want to see her again on the 10th November to talk about some other treatment to help with the pain.

Update 2nd October 2005

Just to up date you with how Kirsty is doing. Well, we went to Sheffield Children’s hospital last Thursday and met with the pain doctor and two other doctors, unfortunately Kirsty was really poorly on the way and kept being really sick, so the ambulance driver had to pull over to allow us to see to her.

By the time we got to the hospital and the doctors saw Kirsty they all said how unwell she was looking and were concerned that she is still being very sick. They are not sure if the sickness has anything to do with the tumour that is on her brain stem, or if it’s to do with the surgery, but the last brain scan results were good and the tumour is not growing and is best being left alone, but he wants to look into this as Kirsty has been getting lots of headaches too.

The tumours that are in her leg will have to be removed because they have grown since her first scan. They are trying some stronger pain killers to help with the pain in her back, leg and groin. He is also going to talk with some other doctors to see what can be done.

Kirsty is also having to go weekly to hospital for physio’ in the hydro pool to help try and build her muscles up.

Kirsty still remains to be very happy and gets on with things; she is back at school but only for a few hours at a time as she gets very tired. Her school provide a taxi to pick her up and bring her home everyday.

Update 26th August 2005

Kirsty is continuing well with her recovery. A visit with the dietician yesterday showed she was only a few lbs short of her original weight which is good news.

Kirsty also spent some time with the physiotherapist and looking forward to the hydro pool next week.

Kirsty is having a lot of pain in her back, and after a call to the hospital her next appointment has been move forward by 8 weeks to 9th Sept.

We would like to thank everyone for all the cards that are keeping the postman in a job.

Update 26th July 2005

Thank you to everyone who has taken the time to write to kirsty all your letters really do cheer her up. She writes back to everyone who includes an address but for those who don’t she sends a BIG thank you to them too.

Update 20th July 2005

Kay is still very much up and down we are back at the hospital next week so the doc’ can see how these two tumour’s in her leg are doing. She’s still getting a lot of pain when she walking but coping really well. We have got three hospital appointments next week with Kirsty, so we are just keeping fingers crossed that everything will be ok.

Kirsty was back at the hospital today (26th July ’05). The doctor had a look at the tumours in her leg and she felt rather than mess about with more scans that Kirsty should have both the tumours removed. One of tumours is around 3.0cm by 2.5cm and the other is now about 4.0cm by 3.5cm. Kirsty will have the tumours removed at Christie Hospital and hopefully will only be in hospital a short time.

Kirsty is all so going to see a doctor at Sheffield Children’s Hospital in the hope they can control some of the pain that she is in. They have said they cannot remove any of the tumours, which are in and on her spine or the ones that are in her groin.

One of the doctors Kirsty sees reckons Kirsty must have over 100 tumours in her body and it would be far too dangerous to touch any of them on her spine or groin.

Kirsty is back at the hospital Friday where she will have physio’ and also see her dietician. Kirsty is on high supplement drinks (Scandishake) and Polycal, which is high in protein and calories to help build her up.

Kirsty still continues to remain cheerful and is a great kid who tends to spend her time thinking of other poorly children and how she can help them feel better.

This is a wonderful site that is really helping to put a smile on a child face. Kirsty loves looking out for the mailman to see if she has any post and it helps to get her up early in the mornings.

“Everyone is so kind weather it be a card, letter or gift just knowing someone has taken the time to write to me really cheers me up. I tell everyone about post pals and how it’s helped me.”

Update 6th July 2005

Kirsty is progressing well. She has seen her spinal doctor since coming home, where a spinal x-ray was taken, and this x-ray showed the bones are starting to repair and she no longer needed to wear her body brace, which is good news.

On her weight front, Kirsty was with the dietician yesterday and pleased to say she has put some weight on and is happy with her progress and too continue with what she is doing.

Schooling, Kirsty is how getting home tution 3 hours a week and is also working on her school gcse course work. Kirsty’s head teacher has been to visit her at home and out lined the schools support for her and also kindly brought her some school work.

Kirsty has an NF hospital appointment later to day over the tumours in her legs, will update you later about this.

Update 15th July 2005

Kirsty is still very much up and down at the moment and still getting a lot of pain, we have just received a letter from Sheffield’s Children’s Hospital to say they hope to see Kirsty very soon. She is also getting very tired. We are a little stuck at the moment and cannot get out much due to her dad braking his foot last week.

You have all made  big difference to Kirsty at post pals and i would like to thank you all for this.

Update 18th June 2005

Kirsty went back to the hospital yesterday (Friday), her doctor wants her to see a doctor in Leeds due to the pain she is getting in her groin, which is caused by the tumors in her groin. She is still not very well and it is going to take about 12 months before she is back to her old self.

Post pals has made a real difference to her with all the lovely cards, letters, stickers and gifts she has received everyone has been so kind and she’s made so many new friends too.

Update 9th June 2005

Just letting your all know Kirsty came home this afternoon and has managed a spot of retail therapy and a meal at her favorite restaurant at the Trafford Centre.

Update 8th June 2005

PM As things stand at the moment, Kirsty will be becoming home on Thursday afternoon. We are all looking forward to this day.

Kirsty has a day out planed for Friday with the Charity When You Wish Upon A Star, A gentlemen’s lunch to help promote the Charity. I know she will be telling you all more about it at a later date.

AM We sit here waiting for the ok to go home.
After Kirsty visiting the home over the last week for a few hours and some overnight, we our hoping the day to come home may only be hours away.

Update 5th June 2005

Kirsty is still in the hospital (three months now) and getting better, we hope to get her home one day next week, she has lost a lot of weight (almost 2 stone), so it will take some time to build her up again.

Kirsty got some lovely letters from a class of children in London whose teacher had been on post pals and read Kirsty’s story, she spent all last week replying to all 25 children and teacher.

Update 30th May 2005

Once again Kirsty made that trip down the motor way to home for most of the day where she spent an hour at the supermarket food shopping and to see her brother at work. Kirsty then enjoyed a walk round the small estate we live on in the nice hot sunshine. Time pasted very quick before she had tea and had to return to the hospital. Tuesday Kirsty will visit the physiotherapist in the gym and have a weight checked. Kirsty was in good spirit and it was nice to see her at home.

Update 29th May 2005

Friday saw Kirsty home for a few hours for tea which went very well and on return to hospital Kirsty had a good night.

Today, Saturday, Kirsty had a visit from her best friend and spent most of that time in the hospital ground in the lovely sun shine we have had in Manchester today. Kirsty achieved the longest time on her feet and walking today.

We are hoping to have Kirsty home again tomorrow for most of the day and back in hospital again at night, they will then review how things have gone on Tuesday.

She received some lovely letters from some school children in London last week who had read her story on Post pals, so she’s been busy writing letters to all the children (25 of them).

Update 26th May 2005

Big thanks from Kirsty for all the cards and gifts that keep arriving and a big thanks for all the messages from round the world.

We are sorry to say there is no good news. We were told yesterday that Kirsty will be in hospital for another three to four weeks; this is due to the weight loss and is now the main focus for everyone concerned with Kirsty’s recovery.
The main focus is to get some weight back on her and get her muscles strong so she is not reliant on others for walking.

It has been 12 weeks now since Kirsty first went into hospital, Kirsty is a very strong girl and I believe this and all your support will help Kirsty get over the last hurdle and see her return home in good health.

Kirsty is now attending the hospital school every day which helps pass the time.

She now has a portable DVD player so Kirsty and Julie spend most of the time watching that along with the TV…

Once again thank for your support and we hope you all have a good weekend.

Update 16th May 2005

Kirsty sends her love to you all and thanks you all for the card and good wishes that keep arriving in the post.

Today Kirsty got the results from the biopsy, the bug they had traced in a blood sample was not active so it will not be treated at this moment in time. They are continuing to treat the lining of the stomach and some valves in the stomach which are not working at their best, this my take some months to put right.

Kirsty had her regular Monday weight check and once again showed a decrease in weight, so they are thinking of tube feeding her along with the fluid over night top ups she is having.

Once again Kirsty managed to attend the hospital school for a few hours this afternoon and is still finding time to keep the nursing staff on their toes with the ghost.

With the weather here in Manchester being very sunny over the weekend we managed to take Kirsty a few laps round the hospital grounds in a wheelchair.

Update 11th May 2005

Morning –

Sorry for the lack of updates, new job and visiting taking my time up.

We hope you are all keeping well and its not getting too warm for you all with the sun coming out.

Kirsty is going for the camera in the stomach today; she will have to go to HOPE hospital for this, so it will be later today before we get any news.

One thing they will be looking for is a bug that has shown up in a blood test or ant damage for the first operation.

Kirsty was seen by the spinal consultant last Friday and he is very happy with the way the spine is looking and has asked her back in six weeks, which is good, he is still being updated over this sickness thing.

Kirsty is in good spirit most of the time and keeping the nursing staff on their toes about the hospital being haunted and there being ghosts on the ward, this hospital dates back to the First World War.

“Royal Manchester Children’s Hospital was founded in 1829 as a small dispensary based in central Manchester for the treatment of sick children. It was the first such hospital in Britain and by 1855 the service had developed to a six bedded hospital. In 1873 the hospital moved to its present site, and in 1923 was granted Royal Patronage.”

Afternoon –

Kirsty has been down and all seemed too have gone to plan.

It looks as if it’s this bug that has been the problem and the lining of the stomach is very red, they have taken some samples and sent them to the lab.

Kirsty will be back on her ward later where I will find out more.

Update 3rd May 2005

Kirsty is still in hospital and Julie is also still staying with her.

Kirsty is still feeling unwell, but is now managing to drink and eat more so she is now off the over night fluid drip.

Her blood pressure is still up and down, it changes when lying down and standing up.

Kirsty is still waiting for the Barium meal scan results which I hope we will get today and help the medical team make there next move in putting Kirsty right.

The Brain scan results show Kirsty had NF tumours on the brain, but these had not changed in the last six years since the last brain scan. This is good.

Today Kirsty is seeing a doctor over a NF tumour that have appeared on her leg in the last 4 weeks, she had a scan on this the other week and this is the follow up.

Update April 28th 2005

Kirsty is still in hospital today, Thursday, still feeling unwell; she had a brain scan yesterday and are trying her on some different drugs to stop the sickness.

The ultra sound scan did not show anything and the blood tests have all come back ok.

As I update you Julie has just called me to say Kirsty’s blood pressure’s up and down and she will be going down for a Barium meal scan this afternoon.

Update 24th April 2005

Sorry to report Kirsty is back in hospital.

Kirsty went for her first consultancy visit since coming home from surgery on Friday, she was not looking or feeling well when we left home, the tripe over to the hospital is some 40 minutes. On the journey over she became more unwell, on arrival she was taken in to see the consultant very quickly.

After some consulting with other members of his team and a member of the hospital medical team, Kirsty was sent over to the medical department where they started investigating what is coursing this sickness and with in minutes said they where keeping her in to run the tests.

Today, Sunday, she was put on a drip for liquid in take, all the tests to date are showing things are ok. Kirsty is hoping to have an ultra sound scan on Monday, but I think all this is pointing back to Body Trauma.

Update 22nd April 2005

Post Pals recieved a lovely card and letter from Kirsty thanking everyone who has written to her.

Kay went to clinic to day and her doctor was not very happy with the way she looked, she is still being very sick. Unfortunately Kay is back in hospital and they are running some more test.

From Kirsty’s Mum

To All at Post Pals

How can begin to put into words how much you have helped not only Kirsty over the last few weeks but all our family.

A special thank you to everyone who took the time to visit Kirsty’s web page and leave so many lovely messages and for all the lovely gifts and cards she has received, they certainly did put a smile on her face even when spending her birthday in hospital.

Kirsty is still poorly at the moment and awaiting the results of a new tumour which came up in her leg while she has been in hospital. But she wanted me to tell all her friends at Post Pals how touched she has been by all your support.

Thank you

Update 12th April 2005

From Kirsty

Thank you for all the lovely cards and gifts i have received while i was in hospital. It was a long four weeks but made so much easier by all the love kind words i received from so many lovely people that i did not even know.

I came out on Thursday but got taken back in on Friday over night, i had to have some more tests done because i had a high temp, which would not come down and was still being sick. The hospital is going to phone me on Monday to see how things are going. I lost over a stone in weight and a new tumour came up in my leg while i was in.

I am trying to get round to write to all the people who took the time to write to me and send me so many lovely gifts.

Update 7th April 2005

Kirsty is home! Thank you to everyone who made her birthday the best it could be.

Update 30th March 2005

Kirsty continues to be in some pain and even more now as they start to move her. Yesterday she was sat up for a short time, but this made her light headed and sick. Today she was sat up and in some great pain. Eating and drinking is still very little, so she is on a drip, it’s the combination of don’t want to eat or drink as she does not want to be sick, being sick gives her pain, giving her morphine for the pain makes her sick and on top of that they are checking her for a water infection again.

Other than that, when Kirsty is settled she is in good spirit.
Kirsty had a big boosting visit of her best friend Julie and her family.

Also the gifts and get well cards from people we don’t even know keep arriving and to these people and all are friend we say a big thank you.

All your kind words are passed on to Kirsty every day.

Update 25th March 2005

It’s all over after a very long day.

Kirsty went into theatre 9am (UK) time; she was under for about 6.5 hours.

The operation was carried out from the back putting steel in from L3 to L9 with a total of 9 screws, and also a bone graph from the hip.

Kirsty looked very well when she came round, I left her about 9.30pm and Julie has just called me to say Kirsty was very comfortable

Update 23rd March 2005

Kirsty’s Surgery is going a head at 9am this Thursday 23rd.

All test results are back and the temperature has stayed on the right side, so if nothing happens with her in the next 9 hours it will happen.

Kirsty is looking well in herself, and with visits from her two best friends this evening she is in good spirit.

Julie and I would like to thanks you all for your continued support and kind words, and we think of you all everyday, when we look at the wall of cards and gifts next to Kirsty’s bed from people we don’t even know and that is very touching.

Update 21st March 2005

PM – Sorry to say it’s off again, got Kirsty down to theatre to find her temperature was very high, after a few minutes of consultation and a few phone calls it was decided the risk was too high to take. They believe Kirsty has an under lying infection. More blood tests.

Kirsty needs to have a temperature of no more than 36c for the next 48 hours for them to go for a Thursday operation and if that fails it will be next week with a different surgeon due to her guy being on vacation. It’s a waiting game now.

I don’t know how she is feeling at the moment, the only thing Kirsty said was “it looks like I will be in for my birthday”.

I will keep you posted on how Kirsty is.

Thank you for your continued support.

Thanks to post pals for sharing this story on their web site.

A big hello to all the people that have visited Kirsty’s web site, that have come from post pals and a big thanks

for all the get well cards and Easter card that have started to arrive.

AM – Quick one to let you all know Kirsty will go down after 2pm UK time today.

Update 20th March 2005

Kirsty is feeling ok at the moment; she says her back feels funny where the discs are missing, a hard spine in to a soft hole.

Kirsty is managing to sit up with the help of pillows, and is enjoying the companionship of a young man that is no the ward, she also had a number of visitors and today here best friends from school will be going.

Update 18th March 2005

I asked her about the operation this morning and she said she was not bothered, I think she is more interested in the young boy in the bed round the corner from her, I think the nurse is playing match up.

Update 17th March 2005


Today’s operation was called off this morning due to Kirsty having an infection; this is most properly why she has been so sick this week.

Kirsty has a water infection which would spread very fasted once the steel was put in, the bugs would cling to the steel and make her very ill and keep her in hospital for a few months.

So they are going to treat the infection now and operate next Monday or Thursday, hope to find out later today.


Kirsty was still a little sick over night but this afternoon she was like her normal self.

Thursday’s operation will be carried out from the back and not the side like last week.

The NF tumours are the problem the surgeon has sow the steel work will be from disc 3 to 9 (last week it was going to be 3 to 7), he will also be doing a bone graph from the hip to pasted on to the spine to help with the healing, the surgery is planed to last six hours.


Kirsty has had another 24 hours of being sick, good new is she is looking well tonight and not feeling sick and giving mum and dad her normal lip. Surgery is planned for Thursday.

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Kayley K

14 June 2012

Story written 2005

Kayley was diagnosed with cystic fibrosis when she was 1 week old. When Kayley was 48 hours old, doctors at her hospital had to give her a life saving bowel operation (Meconium ileus) as her bowel was at bursting point. It was from having this that the doctors went on to test her for CF which came back positive. Kayley was in the intensive care unit for 4 weeks during which she was recovering quickly.

When Kayley was 6 weeks old I took her for a routine check up at the clinic and I was told she had a slight chest infection. Kayley was admitted immediately for 2 weeks IV’s. Whilst Kayley was in hospital she picked up Bronchiolitis which left her so ill she was deteriorating very quickly and nothing that the doctors seemed to do would work. They recommended that Kayley be christened straight away; this happened at 7pm that same night.

Kayley was so ill she could not be moved to intensive care, so the much needed machines were brought from intensive care to Kayley’s ward, where she lay ill for 4 months. Once she turned the corner she seemed to bounce back and it was lovely to have her at home.

When she was 1 she had her Potacath Gastrostomy button put in her tummy. A few months later, during all of this, Kayley was admitted loads of times for IV’s due to recurrent chest infections.

Kayley has fought off septicaemia 3 times. She has had numerous Potacath infections, that is why she is now on her 5th Potacath and this is situated in her groin. She has also fought off a really severe case of Glandular Fever as well as Pneumonia.

Kayley is now on the active transplant waiting list for a new heart/lungs, she has been waiting since August 04. We have just come back from London as Kayley won the New Life award it was a really special night for her and I was so proud of her.

Currently Kayley is ill again, and she is back in hospital. Her time at home seems to get shorter; she was only home for 2 weeks before this admission. It’s been like that now for about her last 9 admissions but she doesn’t let it get her down. Although she gets depressed quite a lot she hides it with her smile.

Update 1st April 2006

Kayley has been very poorly in hospital. She has Cystic Fibrosis and is 5 months post transplant. She has just recently been diagnosed with Diabetes too. She is in hospital at the moment and we are still awaiting further blood tests.

We think Post Pals are wonderful, they have brightened up Kayley’s darkest says. Thanks to everyone who has sent letters and parcels to Kayley in the past.

Update 27th March 2006

Kayley is back on the Current Pal list as she is in hospital.

An update from her Mum;

We are still not 100% sure as to exactly what is going on with her, we are still awaiting all different test results to come through. They say that she has more than likely developed diabetes, and that there are problems with her kidneys. Her anti-rejection levels are also very high and her white blood cell count is really low. She has been in hospital since Friday where she is receiving IV antibiotics and drip fluids; she has also been getting excruciating stomach pains.

Update January 2006

I have placed Kayley on the “moved on” page due to lack of contact from her family, we are told that Kayley is doing well health wise though. Thank you to all those who took the time to support Kayley.

Update 22nd October 2005

Kayley is going home today!

Update 13th October 2005

Kayley has had some set backs the past week with temperatures and choking, which turned out to be a slight infection rather than rejection. She is due to have another biopsy next week.

Update 7th October 2005

Kayley is doing well she had a little set back the other night but she seems to have picked back up and she is a lot better now.

Update 5th October 2005

Kayley has come out of theatre and she is now awake. she is fine and her new lungs have been cleaned and had a biopsy (to check for rejection)

Her mum said she has colour in her cheeks for the first time, and the rings under her eyes have gone, she has been moved onto a normal ward (Ladybird), and has her appetite back.

Update 2nd October 2005

Kayley has had a chest drain taken out and is doing really really well…. the first things she said when she came round the first time were “I want some lucozade” & “I want me knickers on”.

Update 1st October 2005

Kayley is now awake. She is eating and drinking and has also been walking around the ward.

Update 27th September 2005

Written by Leanne;

The operation went OK but she’s not out of the woods yet. Kayley will be under sedation for two weeks now because if she came to the pain would be too much for her all at once. They are saying that the next 24 hours are vital; her body needs to accept the new organs. We’re praying harder than ever that she can pull through.

Update 26th September 2005

Last week we received a lovely email from Kayley saying how much she like the cards and gifts she has been sent, and that they have made her very happy, I didn’t get around to updating this page and we have just heard that Kayley had her transplant last night!! She got the call and was transferred to Great Ormond Street, she has come through the surgery, but the next 24 hours are critical. I will update when I hear any news, or speak to Kayley’s mum.

Update 17th September 2005

Will you let people know that Kayley is on the mend now and thank everyone who sent her cards and emails for me please.

Update 15th September 2005

Kayley has been diagnosed with Aspergillus, which matty also developed (and caused him a lot of problems). They are also doing more bloods and cultures to see if she has a port infection.

Update 13th September 2005

Kayley is back in hospital again. She is really unwell her resps are really high and her breathing is very fast, she is also a terrible colour, I am really worried about her.

Update 15th August 2005

The other day Kayley was allowed to leave the hospital for a while, to be a DJ for her local radio station!

Kayley came out of hospital earlier on tonight (sunday) so we are off to devon cliffs for 12 days.

Update 3rd August 2005

Despite Kayley’s big night (staring on a TV program), during the morning she did some filming and was in the news, and in the afternoon attended clinic and was admitted as she has lost 4 and half pounds in 2 weeks.  If you watched the program please be sure to drop her an email to say you watched.

Update 14th July 2005

Kayley was able to come home last saturday afternoon, she went into school on monday for the first time since before easter and today she is actually doing her very first sports day.

Update 29th June 2005

Kayley has been really ill in hospital. Her weight has dropped just below 3 stone now, but the good news is that she’s on the mend. She is such a strong minded little girl who keeps on fighting.

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Karah D

14 June 2012

Story written 2005

Karah was diagnosed with Asthma at 6 months of age. She was given inhalers to take all the time, also steroids on occasions.

Then one year when Karah was about 7 she came down with pneumonia. Karah is 12 now and has pneumonia almost annually. Her Asthma quite often develops into chest infections, which develops into pneumonia. She has a constant infection called Haemophilus, which is proving very hard to cure.

She is under the care of numerous specialists and is due to go into a hospital in Southampton to be monitored and treated 24/7.

She is in hospital frequently and most recently she had an escorted emergency into hospital while we were on holiday. That was very frightening one minute you think her condition is improving and the next she has a very severe attack. We have a nebuliser at home and a physiotherapy breathing machine. She has to have a wheelchair on shopping trips now. We have to be in and out of a shop because Karah also has epilepsy therefore cannot stand the lights in shops. The epilepsy was only diagnosed in September 04. She takes medication for this as well.

Karah has home tuition 3 times a week as she cannot manage full time school. Unfortunately she has lost touch with a lot of her friends because they can’t handle her illnesses or in case she has an attack. She gets very bored. We go out as much as possible with her younger brother but are limited to where we go. She likes to participate in outdoor activities but struggles and quite often sits on the sidelines. This upsets Karah.

Whilst on holiday in Devon, Karah went horse riding. She absolutely loved it. So we are looking for a horse riding school near home. When I read about your Post Pals site I thought what a good idea, Karah can actually talk to people in the same sort of situation that understand what it is like to live with an illness. As we speak we are awaiting a date for when Karah next is being admitted into hospital.

Update 20th November 2007

Karah had an appointment yesterday at the hospital. She is going to be admitted next week sometime for a couple of days initially. If her SATS are bad and carbon is high in her body, she will be transferred to Southampton respiratory unit. Last night she had a really bad attack and i had to take her to casualty where she had a nebuliser and oxygen. She has had a really bad pain under her ribs on the left and a burning stabbing pain in her left shoulder and the doctor said she has pleurisy. She is home for now and we are just waiting for the specialist to ring with a bed for her. In the meantime, if she has another attack and is ill at all today, i have to take her back. It’s now lunchtime and she is still in bed and i’m letting her sleep as much as possible.

I hope all of you are well and looking forward to the holidays.

Update 2nd November 2007

Karah won’t be going until Bureseldon House until after Christmas now.

Update 30th September 2007

We are still awaiting a date for Karah’s admission to Burseldon House which has been talked about on and off the past few years. We are hoping it is soon.

Karah, her brother and sister are all in the St Johns Ambulance Brigade and we all love it.

Update 10th September 2007

Karah will hopefully be starting a part time college course in photography in January. She loves anything to do with photography!

Update 30th July 2007

Thank you to everyone who have sent Karah gifts and letters, she loves getting them.

Update 2nd July 2007

Karah is continuing to have chest infections. She was absent from her lessons, which she has in the library, for about a month. She had only been back a week when she picked up another infection. The specialist has increased her epilepsy meds because she is having absences still and she has to have another EEG. Karah had a hospital appointment on the 18th of June and was kept in all day for x-rays, ECG and blood tests. She was very brave as she hates needles, but in the end she wouldn’t let me go in the room with her to have it done, so she was really brave. The amount of times we have had to leave hospitals until she has calmed down.

I would like to take this opportunity to thank everyone, especially Kate, for all the post. I know Kate is ill too, so thank you very much for making the effort. Good luck.

Update 4th June 2007

I have lost count of the amount of posty Karah has received this month so i would like to say thank you to everyone that has sent something. Thanks for the postcards too.

Update 10th May 2007

We came out of Southampton hospital with Karah today. Well, you know when they say trust your mothering instincts? Mum knows best! I have been telling the doctors for years that Karah stops breathing in the night. Now it has been proved. The machines were bleeping every few minutes. Every time she dozed off they would bleep. Sats should normally be above 96 and Karah’s were between 89 and 93 all night. Her pulse should be 80-90 and it was going from 65 to 115 and that was on a good night. So, we have to wait until the doctor writes to us to see what to do about it. We came back home worn out.

Update 2nd May 2007

Karah is still having the chest infections and ear infections. She is going into Southampton hospital on 9th may, initially overnight. The doctor thinks she is stopping breathing. She can’t walk far without discomfort and is out of breath a lot. She sleeps quite a lot and doesn’t have much of an appetite. When she does have an appetite, it’s usually for junk food. She has different cravings on a weekly basis.

We are still battling with the different NHS counties on who is going to pay for her to go to Burseldon house. Both Poole and Southampton are appealing against last year’s decision which was Poole not funding it. So, we are still waiting to hear. It is vitally important that she goes to Burseldon house, because as there doesn’t seem to be a cure for Karah, she needs to learn to cope with it and try and live a normal a life as possible.

Karina is under the same specialist as Karah now for her asthma and migraines; she is also a very anxious little girl and is seeing a counselor. It would be nice to take them all away for a while but we need to stay near a hospital.

Thank you to everyone for sending posty to all of my children. They loved the valentines’ cards they got.

Karah is really into photography and is going to be doing a couple of hours work experience at a photographers. She is getting into Tarot card reading and is quite good at it.

Update 12th April 2007

Karah had appointment at Southampton hospital today. The doctor wants her to be admitted to Southampton as soon as possible, hopefully within the next 2 weeks. Karah’s breathing is stopping during the night which in turn zaps her whole energy throughout the day. She is having difficulty catching her breath all the time.  She has had 4 lots of steroids this year already and numerous antibiotics. Although the steroids help her to breathe, they do make her put a lot of weight on unfortunately. She has had her epilepsy medication increased and uses a wheelchair quite a bit. We are currently trying to get a bigger house or bungalow so life is easier for Karah. She gets so out of breath going up the stairs.

I would like to thank everyone for the post they have been sending to my children, they love getting their very own post.

I am sorry to hear about the children that have lost their battles with life. I feel so sorry for their families. I’m sure their little angels were sent here to touch the lives of their families and bring joy to them for the little time they were here. They will be looking down on their loved ones and are still very much around them. God bless them all.

Update 15th January 2007

Karah has a chest infection that she has had since before Christmas, as has Karina. Karina hasn’t been to school since November, and Karah hasn’t had her home tutor since then either. We actually had to take Karah and Karina to A&E last night because of their breathing and they have been put on more antibiotics and steroids. Kieran has been on steroids too but is much better.

Thank you to everyone for all of your kind letters, cards and gifts and for not leaving Karina and Kieran out. I really thank you for that.

Happy new year to you all and i hope it’s a healthier one for everyone.

Update 22nd September 2006

We are still waiting to hear when Karah is going into Burseldon House in Southampton hospital. She has been put on montelucast for the asthma so we will see if this helps. Karah isn’t very well again; she still has an infection that she has had since February. She is 14 now and is a typical stroppy teenager!

Thank you so much to you all for sending Karah, Karina and Kieran post, it really cheers them up.

Update 6th June 2006

Thanks again to everyone for Karah’s posty this month. We have just been on holiday for a week to Weymouth, it was great, although the kids wanted to spend money all the time! Karah has a continuous chest infection I feel so sorry for her.

Take care all of you, from Karen (Karah’s mum)

Update 5th May 2006

Karah is struggling a bit at the moment she has ear infection and her chest is brewing for another infection. So she hasn’t been to school lately. There is a lot of pressure at the moment because it’s her options year at school, but because she only goes to school for 2 hours a day when she can I have to try and organize things to teach her at home.

Apart from that the doctor at Southampton is trying to get Karah into a hospital where she can be monitored 24/7 for a while. So we are waiting to hear about that.

Thank you everyone for sending Karah letters and cards and gifts almost daily. She is so chuffed when she gets things just for her in the post.

Thank you, love to you all, Karen.

Update 31st March 2006

I just want to say thank you to everyone that has sent Karah cards and gifts and especially post cards. She is getting something almost on a daily basis. Also thank you to those who are sending things to my other two children. They are so good and understanding when it comes to Karah’s illnesses, they just sort of get on with it. We go to hospital equipped with food and toys to keep them occupied. They know we can’t really do the things that most children do and with Karah being in and out of hospital lately it’s just as well they are laid back. Don’t get me wrong they all fight like cats and dogs though! They both have asthma too and are migraine sufferers. Karina has to have an MRI next week because the medication for the migraines isn’t working too well. However I expect she will take it in her stride as usual.

Karah is on more medication including horrible steroids for the chest infection, so isn’t feeling too good still. The damp weather doesn’t help. If she could fly I would take her to a warmer climate for a while. We have a hospital appointment everyday next week except Tuesday, so I need to keep everyone entertained. Especially as it’s the Easter holidays.

Karah is having fun making cards (truth be known so am i) and loves reading, she is into “Charmed” at the moment, the 3 witches. She also loves watching “The Bill” which she watches on tv gold. She also likes make up. I don’t often wear it so she can’t pinch mine; therefore I have to buy hers for her.

Thanks to you all.

Update 7th March 2006

The steroids she has been on don’t seem to have worked that well. She now has a severe chest infection and has to have regular nebulisers, so I’m afraid we have been backwards and forwards to hospital and the doctors for a while again.

My mum has got her into knitting so they are having a race now (shhh but I think my mum is winning) you can’t talk to Karah or watch her while she is knitting though, it’s so funny. She sort of growls if she catches you watching.

Anyway thank you to everyone that is thinking of her, it cheers her up no end when she gets posty.

Update 28th February 2006

Karah has been put back on steroids at the moment, and is very tired all the time, her epilepsy is more noticeable but I think that’s because she is tired. She was doing really well going to school for 2 hours a day, but has had enough for a little while until she picks up again. Thank you everyone for your posty, she waits for the postman to come every morning. It really perks her up when she gets really lovely cards that people have made themselves, Karah has made a couple herself and they’re good :o) She has got a letter or card almost daily this month, so thank you everyone.

Karah got a huge box of Christmas presents from her post pal Karen, thank you Karen so much for all the presents. Karah was so chuffed and exited she couldn’t wait to open the box!

Update 31st January 2006

Thank you to everyone that sent all of my children cards and presents. It made Christmas very special. Thank you. Karah received lots of presents and cards and is still getting lots of cards and letters, at least 3 days a week.

Karah has unfortunately had chest infection on top of chest infection and has only just managed 2 hours at school this year. She has also given me the flu so I am not happy at the moment! Never mind, at least I can empathise a little bit with Karah.

Update 28th November 2005

Karah has been to the Doctors 3 times in a week with one infection after another.

She is getting lots of posty again and emails. Thanks to everyone for taking time out of your busy lives to write to Karah. Also to the people who write to Karina and Kieran – they love getting post, Thank you.

Update 22nd November 2005

Karah isnt very well, she hasnt been well for a few weeks now. She has seen the doctor 3 times in the last week. She is feeling so sick with all the stuff on her chest and medication.

Update 9th November 2005

Karah doesn’t seem to have been getting many cards or letters at the moment.

She isn’t very well again she managed a few hours at school last week but she exhausted herself. She has a throat infection and is having more absences. Karah is also having quite severe headaches and is sometimes sick. She is a bit chirpier today however and hopefully she will get over this bout of infection quickly.

Update 18th October 2005

Karah had a check up today. Unfortunately it didn’t go to plan. I thought Karah was a bit better after the last chest infection. She had been quiet for a few days, which you think I should have realised by now that isn’t a good sign for Karah. The Dr did a lung function test and it wasn’t very good, Dr needs to increase all of her inhalers and antibiotics and she needs more regular checkups. She is also still having fits (absences) despite being on a high dose of epilim. She has really bad headaches and the specialist thinks it might be the epilepsy causing this. So we have to count the fits for the next 3 month and then she will have another EEG then a blood test (which Karah is absolutely terrified about) and then probably increase epilim. She has been put on more medication for the headaches now which actually gave her a good nights sleep last night (infact she is still in bed as I am writing this, lazy bones). She isn’t well enough for school at this present time, but she does try to go in for a couple of hours a week. She is ok everyone, she is quite a happy little girl, a long as she is spending my money that is! Anyway keep those letters and cards coming and emails they really cheer her up. God bless you all, signing out, Karen.

Update 26th September 2005

Thank you to everyone who sent Karah birthday cards and presents, it was like Christmas for her, thank you!

You have brought sunshine into my daughter’s life, thank you. She is so happy that she gets lots of post, it really cheers her up. You’ve been sending mail to my other two children who have asthma as well. Karina and Kieran are so pleased to receive posty. I even got some posty myself from someone from post pals, it really cheered me up too. THANK YOU so much everyone.

Karah is still suffering with chronic chest infections and ear infection and upper respiratory infections. She has quite a lot of hospital visits, which she hates. She has suffered all summer and will now it’s getting on for winter, which is Karah’s worst time of year. She is quite a happy child or sorry teenager (you know attitude, teenage tantrums).

She has home tuition everyday, but does try to get into school as much as she can. Unfortunately she picks up bugs as soon as she goes.

She is a lovely girl though, but a lot people look at Karah and see she looks ok. They forget that she has needed so much medication before she even set out of the door.

Anyway, she is looking forward to Christmas and wants everything, and I mean everything. Oh no I’m going to need a bank loan!!

Take care everyone,

Karen (Karah’s mum)

Update 25th September 2005

Karah is home now, she was only kept in for about 6 hours. I have equipment at home to help Karah when she has an attack but this one just crept up on us.  We had to call the dr out the next day (monday) she wasn’t very well still but she is feeling a bit better today.

Update 19th September 2005

Just thought i would let you know that Karah was taken into hospital last night.
She had an asthma attack followed by a panic attack. She has an upper respiratory tract infection and is feeling really sorry for herself today.

Update 16th September 2005

Karah is receiving a lot of emails from very kind people and I would just like to say thank you very very much. I have read them to Karah but she cannot reply to them at the moment she is quite poorly. She has needed a nebuliser a couple of times today and is in a bit of pain with her chest but she has some friends round at the moment and they are all singing in the kareoke.  So we are not ignoring any of you and I hope you keep sending kind messages. Karina has been off school with an ear infection the past week so I have definately had my hands full.

Update September 2005

Karina and Kieran have received some posty in the past few weeks and they are so pleased and surprised that they are thought of. Karahs illnesses do take over all of our lives so its really nice, thank you every one.

Karah has another infection at the moment so she is poorly again. I knew as soon as she went back to school she would come down with something, but she was so determined she was going. She has lost so much weight recently, it’s just falling off her. So if anyone has any tips to persuade her to eat i would appreciate it. We are ok, though getting excited about Christmas.

Update 20th June 2005

Karah is having lots of hospital appointments lately and physio etc and is so happy that she gets lots of post, it really cheers her up and I get to open my own post now. Unfortunately they are mostly bills! Never mind. Take care everyone Karen xx (Karah’s mum)

Update 9th June 2005

I’m not too good, i’ve got ear and chest infections at the moment, but it should be gone soon as i’m on medication. Thank you for the card and prezzie – i’ve had fun stamping pictures in the pad.

Update 28th May 2005

Karah managed a few hours at school this week but as usual she picked up an infection that was floating around. So when she got some post from post pals she was happy.

I would like to thank everyone for their cards and gifts and kind letters. They all really cheered Karah up, I actually got to open my own mail. Thanks again to all of you. From Karah and Karen (Karah’s mum)

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Kaden B

14 June 2012

Story written 2009

Kaden was diagnosed with Cystic Fibrosis at 4 weeks old. It was confirmed that Kaden had Cystic Fibrosis through the heel prick test and a sweat test. They started treating him immediately with the medication he needed to keep him well and also with physiotherapy.

Kaden has grown many bacteria’s on his lungs for the last two years including pseudomonas twice, so he has to have a nebuliser twice a day to keep it at bay.

Kaden also has poor weight gain and is on a high fat diet but does not eat a lot. He is small for his age and we have to put powder in his milk to add extra calories.

Kaden does not go to nursery or play groups due to infections and is an only child so he is very lonely.

Update 11th February 2011

Well, first of all an apology for not updating in a while, we have been so busy moving and decorating our new house and we finally have the internet back! Kaden’s got a new great big bedroom which he loves; in fact we don’t see him much these days as he’s up there a lot!

He had a great Christmas and got a new toy kitchen to play with and a million other things! He loved the snow we had. He’s also enjoying school so much, he has lots of friends and sings in class all the time and gets gold stars for his singing.

His puppy slinky is now six months old and is doing great. He and Kade are best friends.

He is doing great health wise as he’s eating really well and has weight on him! We had a few ups and downs with coughs and colds, but nothing serious.

Thank you to Sharon (Courtenay’s mum) for the wonderful memory box. We have also had lots of post and gifts from people, so thank you all.

Update 9th October 2010

Well a lot has happened this month. Kaden celebrated his 3rd birthday and had a space party, it was great fun and he really loved, I think it was his birthday for about a week!

He also started nursery which I was more worried about than him, but he loves it so much and loves going everyday and has made lots of new friends.

Also, a big surprise for him was that he got a new puppy called slinky rex buzz! They are already best friends! He is a Jack Russell and so cute!

Kaden received lots of cards this month for his birthday some wonderful gifts. Lots and lots of thank you’s to everybody who took the time to send him a gift and spend their well earned money! We’re so thankful. I’m so sorry that there is too many gifts and names to mention, but we do have a list of thank you’s that we will get round to doing to each and every one of you.

Update 29th August 2010

Kaden’s been a little ill this month. He has a chest infection and he’s on meds so hopefully he will be ok soon. Our dog also sadly died and he was really upset over that, but every day gets better.

On the bright side, Kaden got a new space bedroom and he loves it – a big boy room! We have also been to butlins and had a really fun time. There was lots to do and Kaden really loved the beach, it is his favourite place. He’s also looking forward to his birthday coming up (a big three!) and he’s having a space party.

A huge thank you to Grace for writing and sending Kaden lots of drawings and a little friendship bracelet, we really look forward to getting post from you. Also, thank you to Sheelagh Hawkins for sending Kaden a doorbell for his bedroom, such a great thing, he has recorded a message for his new bedroom and he shouts ‘get out of Kaden’s space room’! He loves it. Thank you to everybody else who has sent post too.

Update 13th July 2010

Well, what can I say; Kaden did come off his neb and seems to be doing great. He has grown so much which is fab and he’s also starting school nursery this term. He wasn’t going to go but because he’s doing so well it is such a shame to miss it and his CF nurse said he should as it will do him wonders. Of course Kaden is so happy he gets to go and play with all the kids and have friends, so all is very good at the moment, he is amazing.

Thank you to Grace Bridgewater for the fab picture you drew of Kaden – it was so good, you have such a talent and he was made up with it. Thank you to Penny who got Kaden a drawing and painting set and me some chocolates which were lovely, you are so kind. Also, thank you to Miss Trevor for the toy hamster, and to E Mason for the danger mouse teddy. You are all so kind. We haven’t got round to thank you cards just yet, but we will.

Update 14th June 2010

There’s not much to update this month. Kaden has just had his review and he’s doing really well and fingers crossed he might be coming off his nebuliser soon if his cough swab is clear. He hasn’t grown pseudomonas for a while so here’s hoping it is gone for good. He has been eating a lot better and put on a few pounds which is so great after along battle. He has got a chest infection at the moment but he is still running round like a loony!

Thank you for the lovely cards and gifts. Kaden loved the box of pirate stuff, thank you very much. He also loved the music parcel too. Sorry if I didn’t mention everyone, it is hard to keep up with so many lovely gifts and cards, he really is a very lucky little boy.

Update 10th May 2010

Kaden has had a great month and we have been very busy had lots of parties to go to. Mummy has also passed her driving test so there is no stopping us.

My Auntie Kerry is doing a skydive on the 22nd of May for Cystic Fibrosis so we will be watching and cheering her on! We are hoping to raise lots of money.

I got a new Bob the Builder bike this month and I’m learning to ride it. I also had a little accident as I fell down the stairs, but I’m ok now. I promised mummy I will never go on the stairs on my own again!

Well, got to go, me and mummy are going to bake some buzz cakes.

Thanks for the post this month and the lovely Mickey Mouse drawing – Kaden loved it. Kaden has had some great gifts this month too so thank you very much.

Update 4th April 2010

Kaden has been unwell for a few weeks with bugs, has grown a few bacteria and has also got a nasty cough. As always though, he carries on being a nutter! Nothing puts him down.

He really enjoyed going to see Snow White and sang all the way through. We went to the fair yesterday and he just loved it. The weather was so sunny, which we love, as we get to go out and have fun in the sunshine!

Easter has been great and Kaden has lots of chocolate! Thank you to everyone who sent him an Easter present. Thank you cards will be sent to everybody soon. Kaden received some lovely gifts, so a big thank you to Lokryn and Talek, also to Alan and Julie, and Emma Irvine. Thank you to everyone else who sent Kaden post, there are too many to mention. Also, a big thank you to Yvonne who sent me a lovely box of gifts for Mothers’ Day.

Post Pals is doing a wonderful job and making so many children happy.

Update 5th March 2010

There’s not much to report this month, other than Kaden is doing really well at the moment. He’s put some weight on and we are also really looking forward to summer this year so we can get out more.

He’s really looking forward to going to see Mickey Mouse and Snow White in the Echo Arena. We’re so excited as they are his two favourite films.

He is really enjoying getting his post; he’s such a happy little boy. Kaden received a Timmy Time bedroom door sticker with his name on which he loved so much. Thanks to everyone.

Update 1st February 2010

Kaden has had a great month; he is really well and is even eating! He’s put two pounds on – yippee! He loves getting his mail and says he now has lots of friends.

Kaden has received some beautiful hand made cards this month and it means a lot that people have put all their time and effort into making them – we like them a lot! Thank you to everybody who sent Kaden mail and gifts. He really loved the Mickey Mouse teddy/pillow most of all – thank you to Charlotte and James for that as it really made his day. Thank you for the books too, he’s received iggle piggle and an animal farm touch and feel book. He loves them. Thank you everyone.

Update 7th January 2010

The beginning of December was hard for Kaden as he was ill and feeling a bit sorry for himself, which is so unlike him, but come Christmas time he soon was back to his normal self and so looking forward to Christmas.

Christmas was great this year and Kaden was really pleased with all his toys from Santa.

For New Year we went to a family party and Kaden was the centre of attention, singing and dancing and keeping everyone entertained, which he loves to do. Then of course when the snow came, it made Christmas even more special for him and we loved making snowmen.

Thanks for all the cards and reindeer letters as Kaden loved them. Thank you to Alan and Julie for the lovely gifts they sent which Kaden loved, it was so kind.

Update 4th December 2009

Kaden had his annual review today at the hospital and he has done great on all his tests – we are so pleased, and he has made us all proud today by eating! Let’s hope he keeps it up.

Thank you to everybody who took the time to write to Kaden and send him gifts. I didn’t realise how much people care and think about others – you all are truly great. Thank you Post Pals for coming into our lives and making my little boy so happy.

Update 27th November 2009

Kaden has just received his first piece of mail from Post Pals and I just have to say that I’ve never seen him so happy – he’s over the moon and he is jumping with joy shouting thank you! I would just like to thank Post Pals and the little boy aged 4 who sent him mail, you have made him a very happy boy. We would love to send a thank you card to the little boy but have no return address.

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Josh H

14 June 2012

Josh and his family are committed Christians.

Story written 2004

Joshua and his brothers were diagnosed with X-linked Lymphoproliferative Syndrome (XLP) back in November 2003 after suffering from acute anaemia.

The only cure is a bone marrow transplant which Joshua started in June 2004. The transplant has gone well with a few hick ups along the way and it is hoped that he will be home in the next few weeks. The transplant is a cure and once stable it is expected that Joshua will go on to live a full and reasonably normal life.

Joshua is the first of the 4 brothers that have to go through this procedure and he has been extremely brave and courageous. Indeed he has already volunteered to be the ‘third adult’ on the transplant ward during the subsequent transplants for his brothers.

He is very fun loving, has a great sense of humour and is extremely caring and gracious to others. Indeed it has been a privilege being with him during this difficult time. Always a smile on his face.

Update 20th February 2008

We sat down last night over tea and talked about the wonderful support we have had from you guys over the last 4 years. There was agreement that as Joshua, Nathan and Daniel are so well now that they should move on to the ‘Moved On’ status. It would be good to keep Luke on for a few more months – he remains well but still a good way to go.

Sincerely thanks for your support.

Update 20th September 2007

Positive news for Joshua in that his bone density is now almost back at the bottom of the normal range. There is now also a plan being put forward to take him off the last small dose of steroids he is on. However, his scleroderma is still active – particularly on some areas of skin. Joshua has definite better joint movement in the hips and knees compared to six months ago, but there has been no improvement on the ankles and arms.

Update 4th May 2007

Very positive news for Joshua after his ‘scare’ last week – his bloods on Tuesday show that everything is back to normal – a great relief. We are still no wiser though to knowing why his Hb level dropped so quickly. The plan now is that he will have bloods every two weeks and they will monitor the levels. Encouragingly, last week Joshua did have EBV in board (EBV is the glandular fever virus – which XLP boys have no resistance to and is life taking) with a moderate count of 15,000. This week it is gone – the new immune system is working well.

Update 28th April 2007

Joshua went up to GOSH for his 3 monthly check up on Wednesday. They were very pleased with the progress he was making – both his skin and his mobility are improving and his hair loss seems to have stopped. However on returning home Allison picked up an urgent telephone call from GOSH to say that his Hb level had dropped significantly (Hb is the main component of red blood cells). New bloods were taken at Southampton General Hospital yesterday morning (to check that it wasn’t a dodgy sample) and this also confirmed this fall. So last night Joshua had a blood transfusion, came home and is back at school today. The Doctors are unsure as to why this has happened – there are no obvious bleeds, nor any blood in his ‘outputs’. Joshua will go back into Southampton on Tuesday for a recheck…

And this Sunday should be a wonderful day (all of the Hartleys will be there) as we have the first XLP RT Triathlon. We have 27 teams battling it out over a 3.5 mile run, 16 mile cycle ride and a 0.5 mile swim!

Update 23rd March 2007

Joshua has recovered well from his infection and has been back at school all week.

Update 22nd January 2007

Joshua is doing well – seems to be over both the chicken pox and shingles. The hospital promised that he could come home for his birthday tea tomorrow evening – hopefully home to stay. Please send birthday emails to

We should be live on GMTV (ITV1) after 9am tomorrow (Monday) morning. Sorry its short notice.

And we should be in the medical section of the Daily Mail this Tuesday.

Update 20th January 2007

Joshua is in hospital (Southampton) – he was admitted on Thursday morning. It looks like he has both shingles and chicken pox…

However, he is much better today and we hope that he will be able to come home on Monday – his 15th Birthday. Unfortunately it does mean that he will miss his birthday treat, we had booked tickets for us all to go to see the ‘Lion King’ in London, Allison will be taking the other 3 boys up.

Update 16th January 2007

Joshua’s battle continues. He now has shingles on a painful part of his bottom. Shingles can be very serious for a child shortly after their BMT but are not serious for Josh – just very, very painful. He is now back on our favourite drug aciclovir and he does seem a little better this morning.

Update 30th December 2006

Once again, thank you to our elves, they made christmas that more special.

Update 17th December 2006

It’s definitely been a better year for Joshua this than last. He did very well in his SAT’s over the summer and has now settled in to start working on his GCSE’s. Medically there has only been a little sign of GVHD – Joshua now has some hair loss – but the main development is that he now has ‘Scleroderma’ also known as ‘hard skin’. This is excess collagen deposits that can affect the skin and joints and is caused by GVHD, Joshua starts a new once a week course of medication – which could go on for… 2 years! This is limiting his mobility and can be very painful at times.

We have literally just returned from a remarkable holiday in Lapland courtesy of the ‘Make A Wish’ foundation. The highlight for Allison and Dave was riding a team of 7 husky’s each through a snowy forest with the most amazing pink sky – breath taking and truly amazing. Dave also managed to turn a snow mobile over with Allison on the back…

Indeed with things being relatively ‘normal’ in the Hartley household we have also enjoyed a memorable trip to Disneyland Paris and a week on a farm in beautiful Devon and Dave took Joshua and Nathan camping at ‘Soul Survivor’.

Update 19th November 2006

Joshua is doing OK. He is now well into his course of treatment for Scleroderma and he believes that his ankles and knees feel better. Allison took him up to GOSH last Wednesday and they were very pleased with the initial progress made, his skin looks much better. He continues to enjoy school although changing classrooms is a real battle for him with the push and shove of the crowds. Joshua should also restart his immunisations in January – proof that his immunity is very good now.

Update 15th October 2006

Joshua has now started his new medicine to help with the Scleroderma – we have been told to wait from 3 to 6 weeks to see some improvement, so it’s still early days. Mobility remains the big issue. He will also be going to GOSH this Wednesday as his port is not bleeding back properly.

On Thursday 26th October our Home Church will be holding a day of prayer and fasting for Joshua. We now need to see a final end to this long journey he has been on. Members of New Life Church in Romsey will receive a pray sheet next Sunday – but if you would like to join with our local church family, then please email and I will gladly send you a sheet.

Update 7th October 2006

The saga for Joshua continues. He went up to Great Ormond Street Hospital on Wednesday and was diagnosed with ‘Scleroderma’ also known as ‘hard skin’. This is excess collagen deposits that can affect the skin and joints and is caused by GVHD. Joshua starts a new once a week course of medication which could go on for… 2 years! Interestingly he has been better this week although is still complaining of sore joints in his ankles and knees…

A number of folks have emailed me back asking why only Nathan and Daniel are ‘Walking the Test Way’ this weekend – this is the reason for Joshua and we expect 6 year old Luke would spend at least 4 miles on his Dads shoulders. The forecast for the weekend is good and once again thanks to all you kind folks who have sponsored the boys!

Update 1st October 2006

The battle going on in Joshua continues. Over the last few months we had not seen any great signs of the chronic GVHD (Graft vs. Host Disease) which has been plaguing Josh over the last 28 months since his transplant. Unfortunately it would appear to have flared up again on his skin with some bright red patches on his lower legs. Fortunately one of the many creams that we have seems to have dulled this and it has not spread further. However one side effect on this is that his knees are now very sore – this is possibly due to the tightening of the skin following the GVHD. So he is back up to GOSH next Wednesday.

Update 21st September 2006

Allison took Joshua to GOSH today and again all is moving in the right direction. Because he is now on a very low dose of steroids his immunity has recovered enough so that he now no longer needs to have his immugloblins. Good news on his bone density too – a year on from being diagnosed as being 3 standard deviations from the norm, his bone density is now just below normal. Wonderful. So he will hopefully shortly stop these infusions as well and possibly cut down on the calcium supplements he has to take with every meal. Just 6 more weeks of steroids to go and then hopefully off those too – for ever!

Update 7th August 2006

Joshua is now much more mobile with the weight still coming slowly off. Next week should be an interesting challenge as I am taking Nathan and Joshua camping for a week.

Update 23rd June 2006

Joshua is now finally loosing weight – down 4kg over the last two weeks. This is about the right rate of decent in terms of weight loss – we don’t want to see it come off too quickly – but we do want to see it come off! He is now just on a small dose of steroids every second day and there is no visible sign of the graft vs. host disease.

Update 15th May 2006

Joshua is still on a small dose of steroids but disappointingly we have not seen the weight drop off as we have seen previously. Last week he went in to hospital to have his 3 weekly immugloblins and because he has been so ‘pricked’ and he has put on so much weight it took them a very painful hour to find a vein. So this Wednesday afternoon he will be going up to GOSH to have a ‘port’ put in. This will be a small operation to put a skin type port under his arm to make access to veins that much easier. Typically I am away on business that I cannot move so the responsibility again rests with Allison to get him up to London and back… However his GVHD seems to be OK at the moment, although he does now appear to have some hair loss. It’s been a tough 2 years for Joshua.

Thanks for your continued support and prayers.

Update 15th April 2006

Joshua is now on a low load of steroids following last Autumns flair up of Graft Vs Host Disease (GVHD). He still has a lot of weight to loose and it is still not clear if the graft has finally settled or not.

Update 18th March 2006

Joshua is getting better. Importantly he is now coming slowly off the steroids and he is starting to loose weight. His weight gain has been the big issue this time around. At the bottom of his transplant he was just 28kb, at the top of having steroids his body weight has nearly doubled. This had impaired movement, and just generally grotty feeling. He was also having some pain in his knuckles when he wrote but a new medicine seems to have knocked this on his head.

Update 18th February 2006

Josh is doing ok. He had his MRI scan at GOSH last Monday and we finally heard the results last Thursday. There has been little change to the inflammation (possibly a slight increase in one area) but as neurologically he is 100% ok they have started to reduce the steroid dose he is on. This is positive news for Joshua as the steroids have meant that he has put a huge amount of weight on – he should start to lose this now. He does now occasionally have problems with what seems to be arthritis in his knuckles on both hands – at times almost bringing him to tears with the pain. He is seeing a specialist on this in just over a week’s time. Joshua will also be in hospital during the day on Monday to Wednesday when he has his regular 6 week infusions to help increase his bone density (the other bad side effect of his steroids). He remains though the most wonderfully positive young man.

Update 1st February 2006

For those in the UK please don’t forget to watch Songs of Praise this Sunday (BBC1 – 18:10 GMT) – it should be interesting!

Update 25th January 2006

Joshua has been back to school for a few weeks now. At parents evening last night all of his teachers commented on just what a positive attitude he has…

Update 1st January 2006

It’s been a real mixed year for Joshua. He had the joy of returning to school in the spring, a wonderful summer and then it all went ‘pear shape’ in the autumn. Joshua is now back on steroids and this has really helped settle down the Chronic GVHD (which he has now been officially diagnosed with) but we also know that this is ‘bad news’ for his bone density. He is pretty good at the moment and has enjoyed having all his brothers around him over the festive period and he is now the very proud owner of a Hornby Train Set! The hope for early 2006 is that we can reduce the steroid dosage, see the chronic GVHD go away and build his bones back up – and then importantly get him back to school. I have never met a young man so desperate to get back to school! Joshua remains a young man of deep faith, undying love and great courage.

Update 18th December 2005

Joshua went to have a follow up MRI. The bad news is that there would appear to be some new areas of infection/inflammation in his brain. But the areas that were there before have largely dissipated. In himself he remains well, his memory appears fine – although is very stiff (particularly around the knees) due to his low bone density (caused by being on steroids for such a long time – 2.5 standard deviations from the norm for his age for those with a maths background). He will be coming with Nathan to see the consultant at GOSH on Wednesday for an assessment…

Can I take this opportunity, a week before Christmas Day, to wish you all a peaceful Christmas. We are so grateful for the wonderful support over the last few months – it means so much!

Update 7th December 2005

Please continue to pray for Joshua – he has ongoing problems with his joints due to low bone density – it can be very uncomfortable at times.

Update 30th November 2005

The great news is that Joshua came home on Monday evening from Southampton General Hospital. He is doing very well but is unlikely to return to school until January – when we know that his immune system is back up functioning properly after the recent steroids he had to take.

Update 23rd November 2005

Joshua is in the process of overcoming the next hurdle. Unfortunately last Sunday it was clear that he was getting short of breath and so has been admitted to Southampton General. He has ‘PCP’ which is the fore runner to pneumonia. He became susceptible to this after the last dose of steroids – and he is now on steroids to help dampen down the situation. The +ve news is that he would appear to be over the worst – the Drs are pleased with him.

So we now have to deal with having two sons in two separate hospitals – although we have been told that Joshua should be home again shortly. When he comes home he will be placed in bubble wrap and never allowed out again (joke).

Thanks for your prayers – the messages we get from everyone across the globe are a real encouragement and blessing.

Update 9th November 2005

Joshua is doing great at home and will hopefully be going back to school for the morning this thursday.

Update 4th November 2005

Joshua is now home and just about fully recovered from his infection. It would appear to have been a flair up of the virus on the brain that he had during his transplant. The medicine used to ‘put him right’ was stopped about 3 weeks before the flair up. His short term memory has recovered and we are now working on replacing some of the lost muscle that the steroids he has been on have wasted away. We hope he will be fit enough to return to school in a few weeks.

Update 24th October 2005

I (Ian-family friend) have just had a brief telephone discussion with David and he asked me to post a brief update. Nathan has had his transplant and is doing well and has started the process of recovery. Joshua is improving and it is hoped although still has some way to go before he will be able to return home. Unfortunately Daniel has broken his wrist and now has a lovely red plaster on his arm! Please pray for the family, especially both parents as they are finding it a particularly stressful time.

Update 5th October 2005

Joshua is not well. Indeed he is also now staying up at GOSH. Allison brought him up for the BMT clinic today and when they saw how he had lost some of his cognitive reasoning (can’t finish sentences, short term memory loss) they immediately readmitted him. It is highly likely that he has a virus in the head similar to what he went through 15 months ago during his transplant. 5 weeks ago we stopped a drug that specifically addresses this so this is the likely outcome and if it is should respond well to treatment. They are restarting the drug this evening and he will have an MRI and other tests in the next 48 hours. They also found out that he has low bone density which is probably what is causing the ankle and kneed aches. This is due to the length of time he has been on steroids but is treatable by a regular 9 week IV infusion.

Update 25th September 2005

There was some ‘good news’ mixed in with some bad for Joshua. The ‘good news’ is that the problems that Joshua was having with his liver and graft versus host disease has passed – these results were all good. But he is now back on steroids (quite a small does) as x-rays taken earlier this week at GOSH showed that he had some inflammation around his knees and ankles – part of skin graft vs. host disease. We do need this to ‘go away’ so that we can concentrate on Nathan’s transplant.

Update 19th September 2005

Unfortunately Joshua is also far from being himself. For the last 10 days or so he has found it difficult to sleep and so has had a few days off school. He also has some stiffness in his knees which we understand is due to him being on steroids for such a long time. Plus he also has a urine infection. So this Wednesday he will go up to GOSH for a full review to try and work out what is happening. His blood and other measures look good through – we don’t think it is the liver GVHD but do need to get him right before Nathan goes in.

Update 3rd September 2005

On Monday Joshua will be in GOSH having his PEG removed (this is a tube that goes straight into his stomach and through which we can push drugs etc.) As of today he is now down to just two drugs twice a day – and happily takes them orally.

And for those who can, we will be featured on BBC Breakfast News this Monday morning – it was recorded yesterday so we don’t know what time!

Update 29th July 2005

Joshua remains well and is coming off his steroids very slowly (again). At his last day of school he was somewhat shocked to be called forward by the Head Master and awarded him the Diana, Princess of Wales Memorial Award for Young People.

This Sunday both Joshua and Nathan are going ‘Over The Wall’ for a week at a special camp which they are looking forward to.

Update 8th July 2005

The events in London yesterday were truly horrific – our hearts and prayers go out to all those affected. Only 24 hours earlier we were driving up to Great Ormond Street Hospital along the road where the bus was bombed and past Great Ormond Street Hospital. And the bone marrow transplant team who look after our sons heard the two blasts.

Joshua has responded well to the small dosage of steroids and his liver function tests are all heading back towards ‘normal’ again. He has been back at school for the last two weeks. Ironically he was on a school coach yesterday heading for a visit to the Bank of England and St Pauls Cathedral – but the coach turned round.

Update 22nd June 2005

The swings and roundabouts continue…

We had hoped that Joshua would have finished the majority of his meds two days ago. But at the start of the week he clearly was not too good, hasn’t made school and it has been confirmed today that the Graft Vs Host Disease of the liver is back. So he is back now on the steroids, although a relatively mild dose, and hopefully this will clear it up.

It reminds us that whilst the bone marrow transplants are life savers and a cure for XLP, they do leave the new immune system very open to disease and infection… It will take 2 plus years for their immune systems to relearn – an awful long time.

Update 11th June 2005

We have been waiting for a while now to get Joshua’s CD4 counts up (a subset of his white cells). Once these reached the magic figure of 300 we can reduce his medication dramatically… And this week they shot past the winning post at over 500! So a week this coming Wednesday he stops the majority of his medicines and his 3 weekly immugloblins – wonderful. And last Wednesday (8th) was the anniversary of his transplant.

Update 24th May 2005

The Walk 4 Life on Sunday was fabulous. Some 700 folks turned out and the estimate is that a total of over £30,000 has been raised for the Anthony Nolan Trust. We are made it around although it was a bit telling on the kids towards the end. Joshua was a complete star and recorded several interviews on his way around – for those in the South of England he should be on BBC South Today tonight.

Update 3rd May 2005

Joshua went to clinic at GOSH today, they are very pleased with his progress and immunity and we now have a plan to get him of the majority of his meds in 5 weeks time – which will nearly be the anniversary of his transplant.

Update 7th April 2005

Joshua is great – very happy and loving the freedom of being back in the community.

Update 18th March 2005

Joshua went back to school a week last Monday. He was suppose to just stay for 3 mornings (Monday, Wednesday and Friday) but actually did the full week! and all of this week so far. And the reception he his had from his class mates has been great – a real credit to the school. He is very happy to be back – and very enthusiastic.

So the roller coaster ride continues.

Update 7th March 2005

Joshua has gone back to school today… He has continued to recover well from the GVHD of the liver and last week the Consultant at GOSH said that it would be OK for him to go back. He will be broken back in gradually. He was deliriously happy this morning and left quite early – so was probably the first one there. We remain mindful however that it will take up to 2 years for the immune system to relearn and catch up.

Update 5th February 2005

Joshua is currently at home so he has got time on his hands, he says he is very happy to send thank you cards and e-mails so if you are sending a letter/ card can you please if you have one write down your e-mail address.

Update 4th February 2005

Joshua is doing very well in regards to the liver infection. The key measure has now fallen by two thirds in less than a week, and although it is still high it is clearly on the way down. And he is in great form at the moment…

Please continue to pray for us all – especially for Allison who has lost some hearing in one of her ears. She puts this down to the whirring of machines in hospital, but 3 weeks after Daniel coming home from GOSH she has not recovered.

Thanks again for your support and prayers.

Update 30th January 2005

Joshua seems to have made a good recovery from the liver infection that he had. His eyes are ‘near normal’ now and he is eating and drinking well.

Update 22nd January 2005

Today Joshua became a TEENAGER. No sudden change but a joy that he has reached this land mark age. Amongst his presents was the start of a new course of steroids as yesterday it was diagnosed that he has Graft vs. Host Disease of the liver. The consultants are confident that this will clear it up but it does unfortunately mean that going back to school is now on hold – with a proposed target date from the consultant being after Feb half term… The good news is that his new immune system is ‘excellent’ but this new course of steroids will ‘dampen’ it down. Already after just one set he seems better… swings and roundabouts.

Update 19th January 2005

Some of you will have seen the fantastic news that Joshua returned to school today…

The down side is that it looks like he has a liver infection which is making him very tired – so he came home just after lunch. But he is deliriously happy about being back. We are waiting a call from the team at GOSH to agree next steps re the liver infection (bloods were taken today) – we should get this tomorrow.

Update 16th January 2005

Daniel is home and doing extremely well.

We now have a (hopefully) normal period of family life before Nathan goes in for his transplant – scheduled at the moment for the end of April. Joshua is still on target to return to school fully in the next 2 weeks.

Thanks for the wonderful support.

Update 11th January 2005

Joshua should be back to school middle of next week 🙂

Update 7th January 2005

It is almost certain that Joshua will be returning to school on the 18th of this month. This very much signifies the ‘end of the road’ for Joshua with regards to XLP. Whilst he will still be on some medicines and immugloblins for some time yet, going back to school signifies that he can get back in to public life. He will have to have all of his baby and child jabs again and now actually needs to loose some weight. The later I never thought I would say about Joshua, as he has always been a rake. At the bottom of his transplant he was down to 28.5kgs but is now up to 45kgs, even putting on weight after finishing steroids.

Update 31st December 2004

The elf’s and secret Santa’s went down very well in our household(s).

Daniel had a great day at GOSH opening presents and now has more than enough activities to keep him set up before returning home – hopefully in around 2 weeks time.

And Joshua, Nathan and Luke were also really blessed by the torrent of gifts…

We do have some photos and will send on to the elf’s ‘soon’ – with one parent at GOSH and the other at home we are not the best co-ordinated at the moment.

But sincerely ‘thank you’.

Update 8th December 2004

Joshua remains well and we have just had confirmation that his graft remain 100% donor (hurray). It is now planned that he will go back to school in the New Year.

Update 5th December 2004

Joshua is still very very well – and is contemplating setting up a cakebaking business (follows from his Mum). Any orders please email him, link is above.

Update 23rd November 2004

Joshua remains well and we will be taking him to clinic at GOSH tomorrow (Wednesday) and he should also be able to see Daniel for a short time.

Update 1st November 2004

Joshua is doing very well. His weight continues to go on and he is full of life. The steroids are being reduced now, they are now half the dosage he was originally prescribed and the dosage will fall again weekly.

Thanks again for your great support and encouragement.

Update 15th November 2004

Joshua continues to go from strength to strength – looking very well. The steroids have been reduced significantly and most notably he now has T-cells and no signs of EBV! Although he is a little slower today, probably due to the effect of coming off the steroids…

Update 27th October 2004

We went up to see the consultants at Great Ormond Street today and all pretty positive.

Joshua continues to do well and all are hopeful that he could be back at school just before Christmas (it will be 6 months since his transplant on 9th December). He has put on a lot of weight in the last two weeks, no temperatures, sickness or signs of Graft vs. Host disease and is very bright. He is the best we have seen him for – well as long as we can remember…

Update 16th October 2004

Joshua is now home and doing really well. It was as suspected a case of Graft vs. Host Disease – very mild.

He is now being reintroduced to solid food again – chicken and rice cakes have never tasted so good. It is hoped in 2 weeks that he will be back on a full solid diet…

Update 13th October 2004

Joshua should be home tomorrow (Thursday) as we had a mad dash to London from Southampton General last Friday to confirm that it is Graft vs. Host Disease and now that he is well through a course of steroids he is very much better – big relief. He will have a check up at GOSH on Wednesday.

Update 29th September 2004

Joshua remains in Southampton General with the diagnosis unchanged. Tomorrow (Thursday) he will go down to theatre for a minor op to reinsert his Hickman line as it has slipped and they are having problems drawing back blood. They also intend to take some biopsies of his bowel at the same time.

Update 28th September 2004

Joshua is still in Southampton General and is likely to be there for a few days more. After an initial (wrong) diagnosis of constipation they believe that what is going on in the stomach and bowel is likely to be a combination of GVHD and the ongoing soreness of his stomach – possibly with a bug on board. He is OK but very tired (nights are quite disturbed). Please pray that we will see an end to this and that he can get back on with his recovery.

Update 24th September 2004

We always knew there would be ‘swings and roundabout’.

Joshua was doing very well until Wednesday morning when there was clear swelling in his hands, some high temperatures and the sign of the Graft Vs Host Disease rash…. So he is tonight in Southampton General Hospital so they can keep an eye on him. Hopefully he should be out over the weekend. It has been confirmed that he has mild GVHD. It’s a real shame as it seemed to us that Joshua had ‘turned a corner’ the week before with only occasional sickness and great weight gain.

Nathan may also be admitted due to EBV virus, and Daniel is having his treatments at GOSH.

So it’s a real battle in our household at the moment – I think we feel that we can fight one battle at a time but not two or three together … welcome your prayers as always.

Update 15th September 2004

Written by Josh’s Dad.

It’s now an amazing 14 weeks since Joshua’s transplant (D+98) and he continues to do well, with some sickness still. We’ve just got back from clinic in London and they are pleased with the progress he is making. He has put a little weight on (although still some way to go) and the various levels remain good. They are gradually reducing Joshua off some of his meds as well.

Next Wednesday we take Daniel up to GOSH for his pre transplant treatment. He is still scheduled to go for transplant around the end of October…

Other news…

The boys received the highest award possible recently. (Sorry this won’t work for non BBC viewers!). Last summer the three oldest appeared live on Blue Peter after Joshua won a competition (before all this XLP stuff kicked off) and they were duly awarded the important blue bade. Thanks to our friends at PostPals all of the boys were awarded the gold Blue Peter badge… Joshua in particular is ‘over the moon’ and rumour has it that he even wears it on his pyjamas (only joking Joshua).

Update 2nd September 2004

Joshua has been home now almost two weeks and continues to do well and put some weight on. He still needs a fair amount of nagging to get his special diet down him – no change. Yesterday we drove up to clinic in London (we thought the drive would be a nightmare but amazingly we arrived 1.5 hours early!). This also went well – overall very +ve. There are some concerns that he might have a slight ‘bug on board’ which is contributing to occasional sickness so he now has additional anti biotics.

Update 23rd August 2004

Just wanted to let you all know that Joshua arrived home on Friday. He is very well, very pleased to be home and fitting right back in with the other boys.

The Consultants at GOSH were very pleased with the way the transplant went, that he remains EBV free and that the ‘milk type’ diet he is now on will give him all the nourishment he needs plus also help soothe his inflamed stomach.

It is really impossible to put into words the emotions that we went through driving him back from London on Friday. We are just so grateful that he has come through and that he is doing so well. For the next 4 to 5 months Joshua has to stay away from places where there are lots of people – church, school, restaurants (all food once he is back on has to be tightly controlled), cinemas although Dad has said that he can go and see Southampton FC play as there are not many people there.

Before Joshua came home he received a special injection of T Cells from Texas! Before transplant Allison (his Mum and his donor) gave blood which was sent from the UK to Baylor College of Medicine who were then able to extract from Allison’s blood the T Cells that she has to combat EBV and basically they replicated them and made more! Whilst it is still at test stage none of the 70+ test subjects have gone on to develop Lymphoproliferative Disease (LPD) post transplant.

There will be a fair amount of UK media interest – we should feature on BBC South Today and Meridian Tonight and we also know that Sky News have asked for footage as well…… and there should be a large feature in the Baptist Times this Thursday!

To those of you who have stood in the gap with us over the last few months – thank you. We have known the almost physical manifestation of prayer support helping us through some tough times, and the hand of the Master soothing our brow. As Joshua nears the end of his journey we know that we are very much as a family still at the start – with the other three boys still awaiting their ‘call up’.

Thank you



Update 28th July 2004

Just heard that Joshua has gone ‘into reds’ which unfortunately means back in his isolation room as he has a bug…

However it is not very serious and a decision will be taken on Thursday afternoon about him coming home – it will either be Friday or early next week.

Our house is probably the cleanest it’s ever been – and a large gazebo now stands in the garden to allow Joshua to go out without being in sun light.

Update 1st August 2004

Afraid further disappointing news.

Joshua is likely to be in GOSH for around another 21 days. Since he came in over 2 months ago he has lost a lot of weight and they are keen to get to the bottom of it. He will be ‘scoped’ on Wednesday with results back by the end of the week. A course of treatment will then probably take 2 weeks. We were all hugely disappointed with plans at home for the homecoming well developed – now well on ice.

Joshua remains in good spirits though and was pleased 2 see me (I’m sat with him now). He knows how important it is to come home well.

Please also spare a thought for Daniel who will be come a ‘true Jew’ on Wednesday – necessary preparation before his transplant later this year.


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