Monday 31 December 2007

new years eve

"No one ever regarded the First of January with indifference. It is that from which all date their time, and count upon what is left. It is the nativity of our common Adam." - Charles Lamb

It’s very easy to get wrapped up in what’s going on in our world and forget that we aren’t the only ones who are not enjoying the best of times at this time of year, at the end of the day it is just another day but we all feel a sense of anticipation for the new year I know.

So rather than give another update on Adam I’d like to just use this medium to ask everyone on the mailing lists to spare a thought for those who are suffering at this time and for those who may not be with those they love for one reason or another and for those who fight to ensure the safety of others in this world.

Be like a postage stamp. Stick to it until you get there.’……………..

Love to all


Sunday 30 December 2007

Adam Update - 2008 beckons

Its 22.40 and Adam is sitting up typing on his laptop, having access to the internet during a stay in hospital is such an enabling thing; he and I would be out of our minds without it.

Having made some improvement a couple of days into this stay it appears that the bleed continues or has restarted, he is currently having around 2 units of blood and 2 bags of platelets each day and his blood count is not rising, in fact some days it falls which suggests that the bleed is almost as bad as it was when he came in, but he is slowly incrementing with his platelets and we hope that this will help to stem the flow.

His improvement came when he was fasting and the progress seemed to stop once he started eating again so he is considering fasting again to see if this does make a difference.

I of course could do with some fasting to remove a few additional pounds that I need to lose before running a couple of marathons in April!

So it’s back to the watch and nervously wait game at the moment, he is gutted that he will be spending New Years eve in hospital and even more gutted that the fluid retention he is experiencing, which has made him swell up around the legs and other places, means that he cant get his leg on, he had hoped that we might escape for a few hours on New Years eve to see the new year in but he truly hates being stared at and it happens a lot when he is in the wheel chair without his leg.

He occasionally wears a t-shirt that has ‘ feel free to point, stare and whisper amongst yourselves’ on the front….

We managed to get out for a few hours last night and went out for a meal, he ate well and it is possible that this is adding to his bleeding hence the notion of fasting.

It’s been a long haul this one and I fear it aint over yet by a long chalk…………………………..

As we rush headlong into 2008 I imagine the words ‘let’s hope it’s a better one than last year’ in my head, strange, we seem to have heard that every New Year’s eve for the past few years!

Thanks to all who have sent mails and wishes recently, it’s much appreciated, there’s plenty of people up here but it can be a lonely place.

Love to all and A Happy and Healthy 2008 to one and all.

Friday 28 December 2007

Adam update 28 December 2007

Having had a bag of platelets and a couple of units of blood late on the day before Christmas Eve, I finally got Adam home in the early hours of Christmas eve, around 2.30 am.

The following day his energy levels were very low and it took about 30 minutes for him to get up the stairs and into bed

He was very tired and looked a bit pale so Christmas morning was quite subdued, it took a huge effort for him to get out of bed and bathed ready to make the epic journey downstairs, he didnt even want to open any presents which gives an indication of how bad he felt! The slightest exertion seemed to make him puff and pant as if he’d been running a marathon and he would sweat profusely.

In order to ease things I was dragging him around upstairs on a large towel with a pillow on it, we used this method to get him downstairs, head first and laying on a couple of folded in half duvets, there was a time when he had lost so much weight I could carry him but he is back to a decent weight now and is as tall as me so hard to simply chuck over my shoulder and lift as I may have done in the past.

Finally we got him into his homer dent on the sofa and he was clearly not going to make it down to Karen’s for Christmas dinner so it was decided that Karen would bring the food up to ours and we’d have Christmas there instead.

Simply getting from the sofa into the dining room and onto a chair knackered him and after a few mouthfuls he was not strong enough to eat.

So, we drove up to UCH, no traffic so we made it in double quick time.. note to self, always wait till Christmas Day to be ill the traffic in London is so much better, perhaps Ken Livingstone should declare all days to be Christmas Day then it’d be so much better for congestion.

To cut a long story short, he was bleeding in his stomach, his blood count was down to 5.4 and he was obviously in serious trouble, the docs were at pains to point out that with his minimal platelet count he was unable to correct the bleed and giving him platelets has become in itself a dangerous operation so we should expect the worst.

By some clever manipulation of drugs and Adams own ability to use his mind to control his body, they managed to get some platelets in, 5 pints of the NHS’s finest claret and some other blood products for good measure

Boxing day was a touch and go kind of day…….. it’s a funny thing, I noticed when we first joined this club that people on cancer wards smile at you, you get used to it over time, it’s a kind of knowing, sympathetic smile, I guess no one wants to be there…..walking down the street you don’t smile at strangers but on cancer wards you do. The smiles on Boxing day were altogether different! The docs asked in the morning if there were any other family members who would want to be here…Pauline and Karen came up in the afternoon and we had one of those, ‘lets all put brave faces on as the patient doesn’t know quite how serious this is’ afternoons trying to stay composed.

To cut yet another long story short, the medical team, his body a few prayers from some and some good grace meant that by the end of yesterday he seemed to be out of danger and was able to eat soft foods again, having been starved for 2 days he was gagging for some real food, the rice pudding and scrambled eggs got close but just made him hungrier.

This morning he is having more platelets and some more blood, he is still losing red cells but much more slowly so it appears that he is on the mend. If anyone wants to challenge him to a race around the block, this would be a good time to ensure a win!

May I use this mail to apologise to anyone who hasn’t had proper wishes for Christmas from us or if I haven’t replied to any mails, the run up to Christmas was properly manic and so replying to mails was hard to do.

My love and wishes to all near and far at this time. I hope you had a less ‘exciting’ Christmas than us and that 2008 will bring health and happiness, wealth would be great too but its no longer a priority in my world.

love to all


Thursday 20 December 2007

Adam update Thursday 20th december

I’m in with Adam at the moment and there has been a military type planning exercise to get him a day pass out of hospital for this afternoon in order that he can attend Nell’s birthday party. Then come back in tonight.

His blood counts appear to have just started to bounce back a little and his platelet count, whilst still absurdly low is higher than it was yesterday so it’s small steps but in the right direction.

We’ll bring him back in to hospital after Nell’s and then with luck and good grace he is hoping to get home for Xmas at some time over the weekend.

His body is covered in bruises and petikei which are small bruises that appear spontaneously on there surface of the skin as a result of the lack of platelets.

The podiatrist visited recently and has arranged a different dressing for Adams right foot which is less cumbersome than the boot type covering he’s been using so he is pleased to have a bit for freedom as a result.

Watch this space!


Sunday 16 December 2007

adam update sunday 16 dec

I took Adam into UCH on Thursday for a bag of platelets, everyone was a bit nervous because of his reactions to platelets but he none so needed to have a transfusion. Fortunately his reaction was able to be controlled so he got a full bag; he has very good mind control as is able to control his breathing for a short while to prevent the fast onset of the reaction.

His blood count showed that he was neutropaenic and I said to the docs that I expected he’d be back in before the weekend (note to self…. Don’t make predictions; they have an unfortunate way of coming true!)

On Friday I was at work on site and I txt him to ask how he was, he replied that he thought his leg may be infected and he was in pain. I called him and he said that he thought he needed to go into UCH. As he never, ever asks to go in I assumed it was serious and went home to have a look at his leg. It was obvious from the redness and swelling that it was infected so we jumped (well, Adam kinda hobbled and hopped) into the car.

When we arrived at UCH they confirmed the infection and put a cannula in so that they could start some antibiotics, we had packed a case anyway so were admitted to a ward.

Admission to the ward is an interesting concept, the ward sister in daycare speaks to the bed manager and specifically requests a single room for Adam as he is at risk of infection and neutropaenic, we wait for a number of hours and then get taken to a ward in the main hospital where we are shown to a bed on an open ward, we refuse to go to the bed as it would put Adam at risk and the bed manager cogitates as to whether he is neutropaenic enough, I get a bit arsey and oddly sarcastic (who moi?!)

And then eventually, a good few hours later we find ourselves in a single side room. This time on an old ladies ward where the nurses seem to be more interested in themselves than the patients and Adam is a novelty and they aren’t sure how to deal with him, quite frankly the nurse he had (who was able to grow a better beard than me!) was only just more use than a chocolate teapot.

During the night another nurse came to give him a blood transfusion and to cut a long story short she didn’t remove all the air from the giving set and I woke at 3 in the morning to hear him asking her whether or not she should be connecting the tube up as there was a lot of air in it, she told him there was nothing in the pipe, he pointed out that as we live on earth then unless there was a vacuum in the pipe it must be full of air (no idea where he gets his sarcasm from) she didn’t seem to understand and so I reiterated in my best condescending manner, which I usually reserve for when I’m half asleep having had no real sleep for a good while. And I thought she had then primed the tube properly.

To cut a long story short, she proceeded to administer the blood, including the large amount of air, Adam was clearly distressed and thought that she had dome something that was likely to kill him! He was properly terrified and very upset. Thankfully he was ok but no thanks to the nurse. It transpires that actually, the body can tolerate a fair amount of air injected into the bloodstream but he has always been told that there should be none in the pipe.

A formal complaint will be followed up tomorrow.

By the following morning the infection was much, much worse and he was in a lot of pain with a huge swollen knee and redness halfway up his leg.

The docs pointed out that they have limited options in their fight against infection for someone with Adams situation and I was reminded that he is only ever one of these infections away from being in a very dark place unless we get him into hospital quickly.

During the course of the weekend he appears to have turned the corner and has been moved today to T13 which is his normal ward so he feels much safer and calmer, the pain in his leg is slightly reduced and he seems in much better mood… we hope for this to continue.

And Alton Towers thought they had the best rollercoaster!

Love to all


Wednesday 12 December 2007

adam update 12 december

Adam and Pauline went to UCH yesterday for him to start the chemo, they met with the prof and his blood counts showed that his red count had dropped significantly whilst his white had risen, his platelet count had also risen slightly which is a good thing, however the combination of the low red and high white is ominous and the prof elected to give him a dose of Vincristine chemo immediately and then administer the low dose chemo that Adam will now self administer for 10 days.

He needed 2 units of blood and they were duly ordered and by around 6pm the nurses said that the blood was in the hospital, however they then lost them for a few hours and eventually found them around 11pm. They got away from the hospital after 4am and arrived home at around 5.30 this morning.

Today he felt a little better having had the blood, he self administered the chemo and we are now waiting for its effects to be felt.

Bailey is managing to make light work of destroying much of the house, he clearly needs a lot of exercise and so we are now thinking of looking for a dog walker nearby to cover the times that Pauline cant take him out.

Love to all


Thursday 6 December 2007

Adam Update Thursday 6 December

Having finally gotten out of UCH on Saturday, Adam has been feeling quite good over the past few days, his blood counts are still all over the place but in himself he feels a bit better than he has of late.

The Prof has decided to postpone his chemo for another week so at the moment it will start next Tuesday, this further delay is to try and allow his platelets to rise by themselves again.

He’s looking forward to Christmas and spoiling Nell! Bailey is looking forward to Christmas and spoiling the house!


Friday 30 November 2007


Well, it’s been another lively week, chez UCH.

You may recall that, sadly predictably Adam came back into UCH last week as a result of an infection, he responded reasonably well to the antibiotics and then got the expected chest infection that usually occurs when he is neutropaenic.

Then, just for good measure, we found another game to play..

Adams platelet count has been very low, he has often had a slight reaction when having the platelet transfusions and last weekend he had a more severe reaction like a mild anaphylaxis, his breathing became short, he started coughing and immediately asked for the transfusion to stop, he was unable to get his breath and so was put on oxygen for a time.

Now…. Here’s a potential management problem…..

He has very few platelets, and I mean very few, a recent count was 4…… they get knocked out daily and he uses them up too, he cannot live without them and….. his body reacts to them by going into shock!

Answers on a postcard please…..

Having mailed and spoken to the transfusion specialists they too agreed that it’s a difficult conundrum.

Dr Doom and Gloom asked to see us as a family and pointed out that the situation could easily become life threatening if Adam had a large bleed or damaged himself. So, whilst Adam appears pretty much recovered from the infections now and I hope to take him home tomorrow (Saturday) he is in a precarious position.

We thought he had started making platelets on his own the other day when his count appeared to pop up on its own but it seems that, whilst his marrow may be beginning to do things, it is more likely that the tests were incorrect.

Thus the docs have said that they will only transfuse if he is actively bleeding, he had a bag of platelets tonight and again had a reaction and needed oxygen to breathe.

Not entirely sure how we will manage him at home in the even that he cuts himself badly or gets into difficulty but he will feel better at home….

Dull? Never, not around here!

Love to all.

Wednesday 21 November 2007

Mr Horn is back in the building

The boy came home this evening…

He spent two hours in the ENT hospital this morning as the constant nosebleed he has had all week needed some urgent attention so the guys there spent some time removing a blood clot the size of a golfball that was building in size at the back of his nose and into his throat, he’s bleeding and has a cold, you can imagine what it must have been like!

The guys then cauterized the inside of his nose to seal off the blood vessels, this seems to have worked so he is now able to go without the tampons he’s had stuffed up his nose for the past few days.

He is delighted to be back home and cant wait to have Bailey home too, (I’m in no hurry of course)

The docs have stopped all his leukaemia treatment at the moment to allow his body to start making its own platelets again for a few days, he is due to start the home administered Chemo on Tuesday next week providing he is clear of the cold by then.

Once he starts the chemo his platelets will drop off again and he has developed a reaction to the platelet transfusions which gives some cause for concern, so we simply watch and wait again to see how his disease reacts to the low dose chemo.

Love to all

Sunday 18 November 2007

update Sunday 18th

Adam is sitting up in bed, typing on his lappie, Facebook I imagine!

We were having a competition to see who could cough the most during last night so neither of us got much sleep, and by 5 o’clock this morning I had decided that the chair I was sleeping in really was never going to become comfortable!

Yesterday the docs said that they had grown a bug in his blood and that the broad spectrum antibiotics he was already on would be fine to deal with the bug so they expect him to be in for 5 days to complete the course of IV antibiotics then hopefully go home.

At some point in the not too distant future I hope to get him to haul his ass into the shower and then we can go outside and hit the shops to get some of the things he needs, he is busy trying to get involved with music management so is designing logo’s business cards and the like in order to get things off the ground.

Julie kindly emailed Adam some photos of Bailey in his temporary home, he was cuddled up to their two Alsatians and also to their family on the sofa…. Chance of me ever getting him to learn that sofas are for humans not dogs blown completely then!

Adam misses Bailey and cant wait to get to see him again, and for anyone who wants to know, Nell had a pee on a proper toilet this morning…… Never let it be said that the updates don’t bring you the big stories and the latest news, as it happens! Sky News ? PAH!!!!

Love to all.


Friday 16 November 2007

Today is Adams Transplant anniversary, it was at around 7.25 pm on this day in 2001 that he has his bone marrow transplant, we watched Coronation Street together as I recall!

It seems such a long time ago now and this week has served as a reminder of how this disease can plat havoc with your life.

On Monday, having had a couple of weeks to prepare himself for the onslaught of another round of intensive chemo, Adam went into UCH for what was expected to be a months in patient stay for the chemo.

The docs said that in fact his body probably wouldn’t survive the treatment so after a lot of head scratching and some ‘one hand doesn’t know what the other hand is doing’ moments, they agreed that they would give him some chemo that he could administer at home instead, he was pretty delighted by this as you can imagine.

His platelets have been very low, apart from the fact that they are the first things to go when the disease returns, the Dasatinib treatment is know to knock out platelets, I took him in on Wednesday for a platelet transfusion and his counts showed that he was neutropaenic, I asked the nurse to request that he be given a shot of GCSF, this is a special drug that boosts neutraphils in the blood.

The registrar on call refused to give him a shot of GCSF and we went back home, by 4.30 in the morning of Thursday he was running temperature of 39.5 and we did the usual panic and eventually drove him into UCH in a very poorly condition.

Another day of frustration followed including placement on a 4 bed open bay on a surgical ward, (the last time he was on a 4 bed open surgical bay he got MRSA!)

Eventually by midnight and after some serious conversations to explain to the bed management team what our idea of customer service was, he had been settled in a room on T13.

He eventually got a pool of platelets, his count had dropped to 5 by then (normal range is 250 – 400). And overnight he finally got his shot of GCSF. Lo and behold this morning his neutraphil count was above 1.

Huge thanks to Julie and Rob who steeped into the breech and took Bailey to theirs where he is enjoying the company of their 2 Alsatians and probably being taught some dog manners, it is this time of year that James celebrates his transplant Anniversary too so good on ya mate!

His chest is not entirely right and he clearly has some infection so he is likely to be in hospital for a few days at least while they get on top of it. As of this evening he was feeling a lot brighter as he had been given a blood transfusion which always lifts his energy levels.

Watch this space!

Love to all


Thursday 8 November 2007

please drive carefully

On the pretext of Sarah having arranged something for him, we woke Adam early yesterday (well, early in his world) and dragged him kicking and screaming into the car, he was perplexed as I was going on what he thought was to be a day out with Sarah but I pointed out that he could take some tips from an old man!

And after we’d travelled a couple of hours to Bedford, he saw signs to the aerodrome and said, ‘dad, I’m sooo not going to do a parachute jump!’ after some whinging we let him in on the fact that if he spoke nicely to the guy at the aerodrome, he might just let him drive around it in a 911 Porsche at more than twice the speed limit.

If you’ve ever been in a car with Adam you’ll know that bein above the speed limit is nothing new, in fact his licence is well decorated to prove the very fact!

Nonetheless he was impressed and excited by the notion and wondered who would be daft enough to lend him a car to go mad in.

Enter the guys from Palmer Sport… Mick Maggio, one of their main men, took Adam round their workshops, showed a few cars and then said the words that he is unlikely to ever hear again…

Adam, you are going to drive a 911 Porsche and then a 420 horsepower XKR Jaguar and we want you to go as mad as you can!

As you can see, if you are looking at the blog he took Mick at his word!


Then, after driving the cars around and losing a few mm of tyres in the Jag, the Stig arrived and took Adam then Sarah and I round in a LeMans prototype racer!

It is impossible to describe how it felt to be driven so fast, so well and to stop so fast that your eyes want to pop out of their sockets. As the instructors told Adam, we are either accelerating or braking, never just coasting!

The biggest of thanks go to Jonathon Palmer and the team at Palmer Sport in Bedford Autodrome, in particular Mick Maggio who gave up his lunch and a big part of his day to put a huge smile on Adams face.

Next week Adam goes back into UCH for some intensive chemo, this is likely to involve an initial stay of around a month and then we’ll see how he’s doing, the disease is beginning to show itself in his counts at the moment and the Prof feels that this is the best course of action. Watch this space………..

Anyone want a dog for a month?

Love to all


Wednesday 24 October 2007

easy does it

OK, OK, I’ve had enough of the ‘you haven’t done an update for ages’ comments so I have put finger to key and typed the following…

We are in something like the eye of the hurricane at the moment, Adam is generally feeling pretty good, spends much of his time keeping Bailey from jumping on the sofa, well trying to at least and adding various bits and pieces to his car, apparently the big tube thing now sticking out of his rear bumper is his new custom exhaust pipe which is vital to make the car go better. The ice cream cone thingy under the bonnet is an induction kit to make it go faster and the new hifi which can break windows from a hundred paces is to make it go noisier.

Bailey has managed to chew most of the house now and I’m not at all disappointed by the new wallpaper in the day room being his favourite chew toy, the cable TV remote looks so much better with bite marks than it did before!

We had a little scare recently when he got in drunk one night, started throwing up blood in a big way, like a horror movie and ended up in an ambulance on the way to the local hospital, 3 days later and the docs confirmed that his gullet was irritated by the various drugs he’s been having and was bleeding which was the cause of the huge blood clots he threw up, some rest, a few of the NHS’s finest platelets and some more drugs and he came home, tired but feeling better.

His new hobby is ordering things on the internet, having them delivered when we are all out (during which time Bailey is chewing the furniture) so they get taken back to the depot and I then go to pick them up. It’s like Christmas every day in the house as boxes and packages arrive almost daily.

And if anyone sees my brand new mountain bike being ridden by a scroat in the Ewell area please feel free to go and knock him off it, anyday now, it’ll have been stolen for longer than I actually owned it! Still, whilst i was driving round Ewell to find the perp, having someone run in to the side of me took my mind off it quite well. reckon i'll stay indoors for a week rather than try my luck!

Love to all


Wednesday 10 October 2007

have bailey will travel

for as long as I can remember Adam has wanted a dog, and for as long as I can remember I've resisted him getting one.

anyhow..... just to prove that even an immoveable object can move sometimes, meet the new love of Adams life... Bailey.

Adam has now finished hte latest round of Chemo, the prof added one extra dose for good measure, not quite buy one get one free but something like...... this weeks counts were a slight improvement from the previous weeks, perhaps a smile on your face really can affect your state of health!

Saturday 22 September 2007

Adam update 22 September

It’s been a while since I did an update, mainly because we have been a bit full on with various things; Adam managed to make his birthday last about 2 weeks which makes up, in part, for it coming so late in his 21st year.

He had a ball at his party and we followed up with a family do which followed Nell’s Christening and Dan’s 40th then Johns Memorial. I seem to have spent much of September with table and chairs in the boot of the car!

Although he is feeling well at the moment, the effects of the latest chemo are just beginning to make themselves known and we are hoping that he will manage to get through this round without becoming neutropaenic. He doesn’t need to get an infection right now!

The last MRSA test was clear so we hope the next is too, he needs 3 clear swabs before he is pronounced properly clear.

So we watch and wait, his blood is doing the right thing but we now know the leukaemia is back in his marrow so we pray (well I don’t pray but you get the gist) that the chemo has the right effect this time.

Love to all


Monday 3 September 2007

Mr Horn's 21st+1 Champagne & Hollywood

So, Adam determined that he wanted to celebrate the 21st birthday that he didnt get to properly celebrate last year as he was in Intensive care at the time, so he took the opportunity to have a combined 21st and 22nd party, his birthday isn't actually until the 13th but hey ho, he never let the facts get in the way of a good party!