Our Pal - Daniel H

Story written 2004

Daniel 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 Daniel is due to start in October 04.

Daniel will be the 2nd of his brothers to go through this – the reason he is next is that a few months ago Daniel had EBV virus (that causes glandular fever) and the XLP condition means that he can not fight this – and it is potentially life taking.

Fortunately Daniel was diagnosed quickly and a combination of drugs has seemingly irradiated it from his system. However, there is fear that it could come back quickly.

Daniel is great fun. Very quite with people he doesn’t know but a ‘riot’ once he gets to know them. He is described as an angel at school which confounds his parents and his brothers who know what he is like at home. Daniel is definitely the sporty boy and has a seemingly unendingly unfilled stomach.

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

Daniel has taken secondary school very well – especially the PE and after school games clubs. He is doing very well.

Update 28th April 2007

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 30th December 2006

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

Update 17th December 2006

Daniel is extremely well, growing ‘brilliantly’ (the later being his favourite word) and now over two years post his BMT. He has struggled at school from the work perspective but is looking forward to go to a new school this summer.

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 1st October 2006

Thanks to all those who have supported Nathan and Daniel in their forthcoming walk (9 days time). This will definitely be the longest that either of the boys have ever walked so please sponsor them…

And if you ever wondered where all this money is going to I am pleased to announce that today we have an advert in the prestigious medical journal ‘Nature’ with a call for research proposals – just a year on we now have sufficient funds to start funding research into this cruel condition.

Update 21st September 2006

Thanks for those of you who have sponsored Nathan and Daniel on their ‘celebration of finishing their bone marrow transplant walk’ they are now 10% of the way to their self imposed target., so thank you!

Update 23rd June 2006

Daniel remains well. He was a little off colour yesterday but made it to school today.

Update 15th May 2006

Daniel also continues to improve. This afternoon he has the first of his childhood immunizations again. With a new immune system they have to go through all their jabs again and can catch chickenpox again…

Thanks for your continued support and prayers.

Update 18th March 2006

Daniel is well and we took him for his check up at GOSH yesterday. Daniel will shortly restart having all his child hood immunizations and this marks the near the end of his journey. He is gaining weight and growing well (0.6cm since Jan). Last Saturday I picked Daniel up after his two hours of tennis. The wonderful coach came over and told me how well he was doing, and asked when Daniel was going for his transplant – when I told him that he had it 14 months ago he was quite amazed. Daniel is that well (and at tennis as I write this).

Update 18th February 2006

Daniel is doing brilliantly. He started tennis lessons today as the natural athlete of the family. Growing well, full of energy – you would not know that he has been through a bone marrow transplant.

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 1st January 2006

It has been a great year for Daniel. Returning home from transplant in the middle of January (seems like a life time ago) and then back to school in September since when he has not looked back. He did his best to add to the chaos of October (when both Joshua and Nathan were in GOSH) by breaking his wrist whilst skateboarding (the skateboard is having a winter break). He is back to ‘bouncy Dan’, eating us out of house and home and very happy.

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 4th November 2005

Daniel’s plaster caste will come off next Wednesday…

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

Daniel was seen at clinic and they remarked how well he looks. He should come off all his meds bar Penicillin (which he should keep taking for life) this Friday.

Update 3rd September 2005

Daniel returned to School and had a fantastic day. Everyone was so pleased to see him back at school after such a long time away. Truly wonderful.

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 24th August 2005

Great news – Daniel can go back to school on the 2nd September! He is absolutely delighted about this (as are we) and is really looking forward to it. Not certain if the school will be ready for the return of the whirlwind though.

Update 29th July 2005

Daniel remains very well – and very loud. This is a very good sign. Each week we reduce his Cyclosporan dosage (this is a drug that suppresses his new immune system – stops it becoming a ‘wild horse’). And immediately afterwards we see a slight flair up of his skin graft vs. host disease but the steroid cream we apply has it under control after a couple of days – may this pattern continue! 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

Daniel is very much back to himself. He is eating enormous amounts of food (far more than he did when he was on steroids) and has lots of energy. If things continue he should be back at school at the start of the next school year in September but still a long way to go.

Update 22nd June 2005

The swings and roundabouts continue…

Daniel had his central line removed on Thursday. This was mainly because it was only being used to take bloods every week or so and is a potential infection point. The small 15 minute operation went without a hitch and Daniel was very pleased to see the line go. However just tonight he showed that he had a small temperature…

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

Daniel is doing OK as well. His blood counts have been good and climbing over the last few weeks. He does however have a line infection (again) – so is receiving an extra antibiotic for 5 days. The plan now is to take his central line out as soon as possible as it is only used for bloods – another good step forward.

Update 24th May 2005

Very pleased to say that Daniel is home… and will be sleeping here tonight. Amazingly the jaundice has disappeared (there apparently are some possible medical reasons for this – when we know them we will let you know!). He has come back on a gluten and dairy free diet – and as he is now receiving no supplements then has to keep his weight up. We are off to GOSH tomorrow for them to check him over and try and unravel what has happened.

Update 19th May 2005

Some steps forward – some back…

Daniel is now allowed home for around 4 to 5 hours a day. This has made a huge difference as he can see his brothers when they come home from school and we can all have tea together. He is on a non-diary, gluten free etc. diet. This means only very simple things – but it is now amazing what the supermarkets stock… For the last few days we have seen the start of the end of the watery poos and indeed some solid ones yesterday (but not today). He is now passing about 0.6 litres a day… (sorry for the detail)

He finally stopped the steroids on Monday after what has felt like an eternity. This should mean that his white cell count should now start to rise and get rid of the blessed Astrovirus…

However – it does now look like he has GVHD of the Liver – there is a definite yellow tinge to his eyes… And the solution to this? Back on the steroids… You may recall that Joshua was diagnosed with this way back in January – he is due to stop his steroids for this next month!!!

So it looks like we are in for a long hard fight over the summer…

Please continue to pray for the break through we so desperately need…

Update 13th May 2005

Daniel remains in hospital in Southampton. The biopsies came back showing that he does only have Astrovirus so he is now being weaned off steroids. Unfortunately he had a rash this morning suggesting that the GVHD of the skin might be reappearing (we have been in this cycle for about 3 months now!). Daniel is well in himself, laughing a lot again (playing a few jokes on the nurses and his parents) eating a plain diet but also still having TPN – so is restricted in movement. However the room he is in is ‘palatial’ compared to most rooms – with his own bathroom, PS2 and desk top computer…

Update 3rd May 2005

Daniel is back at Southampton General from GOSH. He is doing well – and is starting to eat some plain foods again (already put back on 1kg). We should get the results of the biopsies back tomorrow.

Update 1st May 2005

Daniel’s scope went well at Great Ormond Street on Friday. The consultant said that it looks like it is just Astrovirus and not GVHD of the gut – but this will be confirmed when they get the results of the biopsies back – but not until Thursday. Daniel is now on TPN (that provides all of the fluid and the essential nutrients and electrolytes when they are unable to feed themselves by mouth) with a plan being hatched to reintroduce food gradually. The consultant was confident that there has been do significant damage to either the stomach or gut.

The team at GOSH were happy to allow Daniel to come back to hospital in Southampton on Saturday – but they cannot arrange a bed until this Wednesday, the day that Joshua is meant to go up to GOSH for clinic ! More pressure…

Update 26th April 2005

Daniel is unfortunately still in hospital. Whilst they are well on top of the line bug , the Astrovirus and possibly other ‘things’ mean that he is loosing a lot of body fluid and consequently weight, minerals etc.. Last night he passed over 1.2 litres… a lot for a 9 year old boy. It is likely that he will go to Great Ormond Street Hospital in London for further tests on Thursday afternoon.

Update 24th April 2005

Daniel is still in Southampton General Hospital – although we hope he will come home tomorrow (Monday). He did indeed have an infection around his central line which then spread to his blood. It would however appear to be sensitive to an antibiotic so he is on the mend. However he will need the antibiotic 4 times a day for the next 2 to 3 weeks – and it will be IV – so tomorrow one or both of Allison and myself will be trained in this – yet another new skill. The Dr’s are concerned that he is basically now ‘skin and bones’ after around 10 weeks of acute diarrhoea courtesy of the Astrovirus – although amazingly his weight has stayed pretty stable.

The knock on effect is that it is now unlikely that we will have Daniel well enough for Nathan to go up for his transplant in mid June – so this is likely to be pushed out yet again. Both Nathan and Luke remain well (and EBV free).

Update 19th April 2005

Daniel has just gone into hospital again – unfortunately he had high temperatures this morning and vomiting. We suspect that it is a line infection (where his Hickman line goes into his skin) as there was some oozing there late last week, a swab was taken and a bug identified, and we were to go in and pick some antibiotics up this morning anyhow! Will let you know how thinks progress. The good news is that his blood results last week were excellent – so the transplant side is at least going well.

Update 7th April 2005

Daniel seems to be going through a cycle of ‘Graft Vs. Host Disease of the skin’ and ‘Astrovirus’. Unfortunately the answer to one stops the other from healing! So we still have bad stools and bad skin! But overall he is OK now, it will just takes time.

Update 23rd March 2005

Good news – Daniel is home 🙂

His blood levels went up yesterday, although they have fallen back again today. He has had no temperatures and they haven’t grown anything so we are off tomorrow (Wednesday) to GOSH to see the team there to see if they can shed any light.

Daniel seems good but the astrovirus continues to make things flow. There is a great poem about Astrovirus here.

Update 20th March 2005

A worrying development with Daniel is that his blood counts have rapidly declined since going into hospital – he is now neutropenic, his blood counts for his white cell count and neutraphils have fallen very quickly. And they have been so good for the last couple of months. At least he was in hospital when this happened.

So very unlikely to be out tomorrow as planned, he remains visibly well and in good spirits – although ‘fed up’ with being in isolation.

Update 18th March 2005

Daniel was admitted back to Southampton General last night. The Astrovirus he has had on board for a few weeks now means that his body has not been absorbing some the medicines and minerals necessary. This is being treated now and he should be out by Sunday evening. His ‘blood’ results still look good and he remains 100% donor engrafted.

So the roller coaster ride continues.

Update 1st March 2005

Daniel is OK. Last week it was diagnosed that he has ‘astrovirus’. This is not serious in itself but does account for the diarrhoea and some sickness he has had. We have to just wait for his fledgling immune system to drive it out. His blood levels remain good and as I write this is downstairs with his home tutor working on English.

Update 4th February 2005

Very Pleased to announce that Daniel is now home from hospital. It would appear that he is over the worse that the bug could throw at him – although it will take time for his stomach and bowel to settle down.

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.

Update 31st January 2005

Quick update to let you all know that Daniel is now in Southampton General Hospital…

Over the last week he has been struggling to keep down any food and liquids – and whilst there is no positive conclusive sign of graft vs. host disease it has been agreed that he should go in for a couple of days to get liquids intravenously – resting his stomach.

Puts more pressure on at home…

Update 30th January 2005

Daniel however has picked up an infection in the last week. He is struggling to eat and drink and has a slight rash on his torso. When we visited Great Ormond Street Hospital last Tuesday they didn’t think it was Graft vs. Host Disease. We are back this Wednesday and in daily contact with them. Fortunately Daniel had already regained all the weight he had lost during transplant – but he is not a ‘happy bunny’ and at the tender age of 8 wears his heart on his sleeve. We are feeding him via his PEG at the moment.

Update 22nd January 2005

Daniel is doing great with platelet and white cell counts in the ‘normal’ range….. they were very pleased with him yesterday.

Update 20th January 2005

Daniel continues to do well – including playing badminton in the garden this afternoon (before the rain). He is loving having a home tutor and the relative freedom of home compared to his isolation room.

Update 19th January 2005

Daniel continues to do well – including playing badminton in the garden this afternoon (before the rain). He is loving having a home tutor and the relative freedom of home compared to his isolation room.

Update 16th January 2005

Daniel is home and doing extremely well. He has settled right back in to family life and is absolutely delighted to be home with his brothers – he is literally beaming. Daniel is now virus free and remarkably is the same weight as he went in to transplant – he is eating very 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

Quick update to let you know that Daniel will now be coming home this Friday (14th).

Update 7th January 2005

The good news is that Daniel may be coming home next week… He has been very well in hospital over Christmas and the New Year and has put back on almost all the weight he has lost. He does have a very mild Graft vs. Host Disease rash but nothing to be concerned about. And Daniel has had the odd temperature spike that has been treated as a line infection. He is very good in himself, although still in isolation. The ‘bug’ that he has been struggling to get rid of has almost gone – the load on Monday was 48 (one of the lowest ever recorded – usually in the 10,000’s). In his room he now has a mini trampoline and electronic keyboard. We swapped over today and I left him baking cookies with his teacher.

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 22nd December 2004

Daniel continues to do well at Great Ormond Street Hospital. They are very pleased about how the transplant has gone, and the graft remains very strong. He remains full of mischief and regularly has us all falling about with laughter. It has been amazing just how good he has been in the isolation room.

He does however still have the adanode virus which means that he is still in isolation and will be until the at least the week after next. It continues just to ‘hang’ there – at the very lowest levels. It does mean that he still has bad diarrhoea but he is now eating again.

So this Christmas Daniel and myself will be celebrating in London with Allison and the other 3 boys down in Romsey. It will be tough but Daniel has already received the very best Christmas present possible – a new immune system.

Update 13th December 2004

Little to update on Daniel…

The key is that the graft holds strong and as reported in the last email is 100% donor…

He had gone 5 days without temperatures but they reappeared tonight. We seem to be on top of his sickness now but he is still nil by mouth whilst he stays on TPN

He remains in good spirits and is becoming a mean card player. He seems happy enough that we will be in hospital over Christmas (unlikely now that we will get out in time).

Update 8th December 2004

Good news on Daniels graft it is 100% donor. The temperatures have come down somewhat from recent highs but the diarrhoea continues. Daniel is likely to go onto TPN tonight as he continues to loose weight. So overall good news, but still someway to go.

For those in the UK u might like to pick up a copy of this weeks ‘Woman’s Own’ which has a 3 page diary piece on us entitled ‘Our Year of Hope’.

Update 2nd December 2004

Daniel is doing well. He has moved into ‘greens’ which basically mean that the hospital considers him ‘post transplant’. This is very good news indeed. His blood counts are very good and he is now producing his own platelets which is very quick…

However he is still suffering from high temperatures (up to 40.5 one night last week) which is caused by the new graft (because it is so strong) and has a bug on board which means that he isn’t eating much (for those of you that know Daniel this is quite unlike him) and he has bad diarrhoea.

Overall the team at GOSH are very pleased with his progress.

Thanks to all that have written to him and sent presents. He is definitely now a ‘Lego addict’.

Update 29th November 2004

Good news on the transplant side. Daniel first showed a white cell count on Saturday and his neutophil count has risen sharply today – so all is well with the transplant – although we know there is a long way to go yet.

Unfortunately Daniel has developed very high temperatures over the weekend and so is on a course of antibiotics to get what they suspect is a ‘line bug’ away. As he is not used to being well he is at times like a wet blanket and then after some paracetamal the old Daniel re-emerges. It does mean very restless nights for Daniel and Dad at the moment….

I had to tackle one of my worst nightmares this morning – shaving Daniels head. Over the weekend Daniels party piece was to pull huge chunks of hair from his head – which he thought was very funny. But last night it started to come out on its own and so this morning there was literally hair everywhere… He now looks very trendy (or so we are telling him).

Update 23rd November 2004

Daniel is doing well and remains bug free. No temperatures, shakes etc. and just a small amount of sickness. His huge appetite has diminished (as expected) but he is still eating and drinking which is of course all positive. He still has not taken a ‘nap’ during the day and Allison reported that he was leaping from one bed to the other last night – quite amazing.

Now the waiting game starts to see the stem cells develop into his new immune system. This can take a few weeks so each morning we will be looking carefully at his ‘blood’ results until we see his white cell count rise above 0.0.

Update 18th November 2004

Transplant went smoothly last night and Daniel is doing well. He is in his isolation room with his teacher working on the computer at the moment.

It was very humbling to see the bag of stem cells infused into Daniel last night – and to think that somewhere out there is a wonderful stranger who has provided this potential gift of life 4 him.

Update 13th November 2004

Just back from GOSH… Daniel is doing ‘fine’ (his favourite word when you ask him how he is) and tolerating the chemo very well at the moment. He has settled in well but moves into isolation tomorrow (Sunday) so will be confined to a room until his new immune system kicks in. Transplant is lined up for next Wednesday (17th) as planned. It is interesting to note how well he is doing compared to Joshua at this stage – one big advantage for Daniel is that he goes into transplant very well. This has positives and negatives for us. The positives include that he is able to eat and drink well. So for example to flush the chemo through he needs to drink 1.65 litres of fluid a day (it’s a lot for a boy of eight) which he has easily done… the negatives are seeing him go in well – on the ‘surface’ there is nothing wrong… With Joshua we have seen an amazing recovery post transplant – with Daniel we need to see him get back to where he is now (but becoming a X-XLP boy).

It is hard for the family at the moment with one exhausted parent at home and another up at GOSH – please continue to pray for us as a family.

Update 5th November 2004

Daniel is now home – the small operation to insert the PEG went without a hitch and he was very brave. It also worked well as amazingly these were the first two nights that Daniel has ever stayed in hospital – so also good preparation. He seems to have the knack of charming everyone around him – he uses the same ‘big eyes’ technique that Puss In Boots uses from Shrek 2 does (indeed there are many striking resemblances)…

So Sunday afternoon we go back to GOSH for Daniel to start his pre medications before his transplant. Thanks for all the encouragement and prayers – as we face the ‘next challenge’ we know we do not go alone 🙂

Update 1st November 2004

Daniel is great at the moment. Tomorrow (Tuesday) he goes into GOSH to receive his Gastrostomy fitted. This will allow medicines and if necessary food supplements to go straight in to his stomach. This worked very well for Joshua. For info on Gastrostomy please check out this page. We expect Daniel to come back home on Thursday before going back to GOSH next Sunday (7th November) to start the pre transplant treatment (conditioning) before his transplant.

One key word for us at church yesterday was not to be complacent. We have seen Joshua come through transplant cured and now wonderfully well and whilst Daniel goes into transplant in great shape (Joshua wasn’t – he had a very high EBV load) we are reminded that this is a very serious procedure and that there are real mortality and rejection risks. We need to maintain the strict regime of cleanliness and importantly we know that prayer is what will bring him home cured. Please continue to pray – give thanks for Joshua but pray hard for Daniel.

Update 27th October 2004

Daniel is due to go up for transplant shortly. We can’t be too exact with dates as it would be unfair to make it too obvious for the donor that they are donating for Daniel. Part of the ‘rules’ is that both parties don’t know who they are donating for and receiving from for 18 months and we wish to abide by this – and protect the identity of the donor. So we will be asking our media friends not to be too exact about
announcing any details of Daniel before his transplant. We are likely to do some limited media ‘stuff’ after transplant day… Daniel will follow the exact same protocol as Joshua.

Daniel had a fabulous time yesterday when he was a zoo keeper for the day at Monkey World (http://www.monkeyworld.org/) indeed this way well have defined his future career… (zoo keeper not monkey)

Update 16th October 2004

Next Monday Daniel goes in to hospital for the day to have his Hickman line inserted.

Update 13th October 2004

Daniel will now go up to GOSH in early November and whilst it is possible that he could be out before Christmas it is more than likely that he will be in over Christmas and in to the early New Year – depends just how things go (could be 6 weeks to 3 months…)

Update 24th September 2004

Josh is in hospital with GVHD, and Nathan may also be admitted with a EVB, as well as this Daniel went to Great Ormond Street Hospital for his pre BMT meds on Wednesday (whilst Joshua was going into Southampton). He did very well indeed and everything looks set for the transplant at the end of October – assuming the other boys are doing well…

So it’s a real battle in the 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.

Blessings, David

Update 15th September 2004

Next Wednesday Daniel is going up to GOSH for his pre transplant treatment. He is still scheduled to go for transplant around the end of October.

Update 2nd September 2004

Daniel will be starting the Bone Marrow Transplant process in October, and will be requiring lots of TLC through out. As he will have to spend a lot of time in an isolation room, Post Pals is sending him a Play Station 2, kindly donated by Colin Grimshaw. Thank you Colin.