C/O 60 Stapleford Close
Romsey
SO51 7HU
United Kingdom

NB: this is a forwarding address for the Pal, we do NOT disclose home addresses

Email Pal

Luke H's Parents/Guardians

David and Allison

Luke H's Siblings

Josh (22/01/1992), Nathan (15/12/1993), Daniel (01/03/1996)

Luke H's Interests

Computer, Arts and Crafts, Cooking, Lego and Dinosaurs.

Luke H's Favourite Colour

Yellow

Is Luke H able to read?

Yes

Is Luke H able to use hands?

Yes

Is Luke H visually/hearing impaired?

No

Does Luke H suffer from any developmental delay?

No

Religion?

committed Christians

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 6th May 2008

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 (22^nd) 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

London

WC1N 3JH

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 www.ilovemarrow.com

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 teamhartley.co.uk 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 (http://www.anthonynolan.org.uk/) or if you live outside of the UK then your local registry – you can find a full list of registries here (http://www.bmdw.org/).

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. www.xlpresearchtrust.org

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 5^th 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

London

WC1N 3JH

Update 4th May 2007

The final countdown... It was confirmed yesterday that Luke will go in to start his BMT on Thursday 24^th 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 16^th 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…