Our Pal - Josh H
NB: this is a forwarding address, we do NOT disclose home addresses
- Parents/Guardians - David Allison
- Interests - Lord of The Rings: “ including miniatures, Model aircrafts, Crafts, PS2, Computer - sims, Gardening. His favourite type of books are adventure and SFI
- Favourite Colour - Red
- Able to read? - Yes
- Able to use hands? - Yes
- Visually/hearing impaired? - No
- Suffers from any developmental delay? - No
Siblings - aged 3 to 16 wishing to receive post
About - Josh H
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 firstname.lastname@example.org
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…
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…
http://www.bbc.co.uk/cbbc/bluepeter/contact/badges/ 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’.
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.