Hi there
It’s been a couple of weeks of pretty good news here.
Joshua went to GOSH today for clinic and they were delighted at the progress he has made. Indeed they are now putting a plan together to finally take him off the steroids, they have stopped his 3 weekly immunoglobulin and we are rescheduling his ECP treatment to every 8 weeks – stopping in June. Plus as he is now over 18 he will be seen at an adult hospital (either in London or hopefully at Southampton). Wow. Joshua holds the record of being the longest seen patient by the BMT team post BMT…..but he is just about through!
Luke is also coming down on the steroids and if everything remains well we should reduce them again in a weeks time. His skin GVHD seems to have settled down and his bowels are performing well…. The only downside is that about 10 days ago at school he was pushed and fell over and now has his left hand in plaster. Aside from the initial pain (small chip on a bone) he is very proud of his red caste…
And on Monday I had the pleasure of hosting the world’s first symposium on XLP in London. We had 14 medical researchers from across the globe presenting their findings to date on this rare but life taking condition and many seemed to have eureka moments. Much of the detail was too much for me – but it was a most wonderful day – so thank you all helping make this possible by supporting our key charity.
And if you fancy supporting su then perhaps you would like to become part of a world record and possibly win £10k in the process. We are again involved in the Great Duck race – please visit their web site and support us with a duck or two! http://www.thegreatbritishduckrace.co.uk/
Blessings
David
Hi there
I trust you have had a wonderful time….
My two Christmas ‘wishes’ came true this year.
Firstly, I wanted a day free of hospitals – and as all the boys are so well we definitely got this.
Secondly, I wanted to see Luke’s ‘output’ switch to where it should be coming from – so that we would know that we would soon be ‘stoma’ and bag free, and since early morning on Christmas Day this has also come true.
We had a very relaxing time, watching DVD’s and laughing at how out of tune I am on ‘Band Hero’ on the Wii….
Blessings to you all
David
Hi all
Luke is now home after his mini ops – as you can imagine a little sore….
For 48 hours the ‘output’ did dry up out of his wound and naturally we started to get quite excited. But it is back flowing through the wound now so my early Christmas present hasn’t quite arrived.
Blessings to you all
David
Seasonal greetings
Luke came home yesterday afternoon. It has been yet another long haul but it is great to have him home – and with Christmas almost upon us it looks like we may all be under the same roof unlike the last two years! The best Christmas present for me is the change in ‘output’ suggesting the hole is healing on its own. A few days ago for every 10ml out of the wound there was just 1ml from his bottom. Yesterday that ratio changed to 1 to 1 and so far today there has been significantly more out of his bum!
Luke will be going back into Southampton General Hospital on Monday for an operation repositioning his central line and also the ‘cruelest cut of them all’. He will stay in overnight but we would expect him home on Tuesday.
Things are also looking up for Joshua. He is now on a ‘holding dose’ of steroid – just 5mls every two days and it does look like the GVHD has finally burnt out. Wonderful. He is doing really well with the physio (thank you Romsey Hospital) and at GOSH this week we were delighted to see his lung function improve. 4 months ago it was just 51% but then 2 months ago it rose to 56% and on Wednesday it hit the heights of 61%. Long may this straight line continue!
We are all somewhat shattered and intend to have a quite time now…
Blessings
David
Hi all
It’s been an interesting day – actually potentially wonderful and also a little worrying.
The surgical team met this morning to discuss Luke and there was no one opinion on how to proceed. So the top man (who operated on Luke – saving his life this time last year and to remove the stoma) came to examine the wound. He was very surprised at what he saw. It would appear that the wound has formed itself into a stoma directing output out – and so it was decided that there would be no need for a second stoma! The view is to let this continue and it should naturally heal – so the surgery is off on Tuesday…. This could take up to 3 months – but would be better than another stoma for a year and then having to go through this surgery again.
And this afternoon there was a clear slowing down of output but it remains that it is coming both out of the wound and through his bottom…
However Luke will be having surgery probably on Monday 21st December to reposition his Hickman (central) line and for a circumcision – he has had too many [catheters].
Wow.
But we are in a battle – and tonight I left him asleep in hospital with a temperature of 39 degrees – the first temp he has had since he was in. He was crest-fallen as we had planned to bring him home during the day tomorrow with the hospitals blessing. The most likely culprit is the wound.
In truth both Allison and myself are a little ‘punch drunk’ by all this. We do feel we are in a battle and today has been a significant step forward – but we remain vigilant as we move ahead.
Blessings
David
Hi
Little change.
Luke remains well and we are getting roughly the same amount of output out of the wound and his bottom. At some point this PM he will be meeting players from Southampton FC on the ward – strangely he is not too bothered….
I pressed the consultant this morning to get a realistic probability of the hole now healing itself – we are around the 20% mark.
As I stated in the last update they will almost certainly make a decision on Monday if there is no change to go ahead with a new stoma. It is likely that the surgery would be on Tuesday AM which would coincide with Nathan’s 16th birthday and also the Christmas Concert on the ward that Luke has been rehearsing his violin so hard for.
A number of you have asked why they won’t go back in and try to patch up the hole. The reason is that it will be too mucky in [there] and the bowel too damaged after having his output flow over it for a week or so.
We really do need a miracle now.
Blessings
David
PS – Please do help us make a stand against XLP. You can help us by making a donation today or tomorrow on the bigive.org – who will double your donation. Please visit https://secure.thebiggive.org.uk/donate/donate.php?charity_id=460
Hi all
Ho hum. We still have output coming from both his rear end and the through the wound – with no sign of the later abating.
There is real concern that the wound will get infected and they are well aware that this can’t go on for too much loner. So it looks like we will have a formal review next Monday and if the losses are still the same from the wound then they will have to put Luke through another 6 hour operation plus a new stoma. It would be at least a year before we could try for a reversal then. If the wound does get infected then this would be operation would be almost immediately.
Luke remains very well and is currently in the school room making pizza.
We (once again) feel like we are living on a knife edge – we really are desperate to see this little hole heal. The impact of this failing is just too horrendous – it is a real limiting factor on Luke’s life. Plus the thoughts of another year of managing a stoma and not having a full nights sleep are just too awful.
Blessings
David
Hi there
News is mixed.
The output through Luke’s wound increased last night but is still really a trickle.
But Luke remains very well and with it – no temperatures and there was output through the right place as well. The ‘free drainage’ from his stomach would also seem to have just about dried up and the excess water which was making his feet, hands and other places swell up is also much more under control.
So it does look like all the bits are kicking back in – BUT we still have this leak that could mean another operation – a new stoma – and back to square one…
Please pray.
David
Hi all
The breakthrough! Yesterday afternoon Luke finally delivered the goods. They were two ‘starvation poos’ which are exactly the same as a new born baby would first produce. And this morning another formed delivery. Huge relief.
But Luke is still in intense pain. Indeed it’s probably the worst pain that any of the boys have experienced over the last 6 exhausting years. And there is little medicine that they can give as it comes in waves. Luke has released that the morphine self administered pump doesn’t help and the only medicine which is called buscapan – but even this isn’t really touching it. He is exhausted as well from the constant waves of pain. We do expect this to fall off as his output increases but it really isn’t pleasant and can’t come quick enough.
Added to this he still has excessive fluids in the wrong place – although with a full does of Albiumin under way this should start to see this come back into line.
Thanks for praying – it makes the difference.
Blessings
David
PS – Please don’t forget the ‘double your donation’ scheme we are involved in for the XLP Research Trust. This starts at 10am on Monday – please visit our page at http://www.thebiggive.org.uk/charity.php?charity_id=460&search=8c399f9e-d89a-4e32-8736-41d6cb34ec32
2nd Update
Hi all
A mixed and actually rather worrying day. Around 2pm this afternoon Luke had a clear leak through his wound – showing that there is a leak in the bowel (probably where it was all sown up). If this becomes serious then we are looking at another 6 hour operation and a new stoma.
BUT since then there has been no more leaks (6 hours), he remains well and seems to be in a bit less pain after producing a huge ‘output’.
So we are all (parents and doctors) on a watch it and see over the next few days. If he becomes unwell or the leakage becomes much worse (takes us back to Nathan and his b-cell lymphoma almost 13 years ago) then they will quickly operate….
Please pray
Blessings
David