adamhornblog

Watch this inspirational video

2012-01-29T13:22:00.002Z

if you've come here from the dumball fundraising page for 2012 then watch this video to see the amazing attitude of the 22 year old guy who lost his life less than a year after taking part in the Dumball... http://www.youtube.com/watch?v=8mLNRaxGn-A&feature=related and while you are at it, view this one too http://www.youtube.com/watch?v=gAbDAXOk6bk

This one's for you son

2011-11-23T19:59:00.005Z

Well, It's been a long time coming and today has been bittersweet in many ways but at last the Teenage Cancer Trust unit at the Royal Marsden is almost ready to admit teenagers for treatment, its an amazing unit and Adam gets to have a presence in a couple of places, (look closely in the purple band) I think he'd like that......

26 years ago

2011-09-13T11:38:00.003Z

It's hard to believe that 26 years ago this morning we were experiencing the joy of holding a noisy, wrinkly pink thing in our arms, I was moved to tears by the experience, not least because his leisurely entrance to the world became a bit more hurried after a lengthy night for Pauline as the medical staff, who had previously been relaxed and casual, turned into a slick machine to make sure he got to meet us all safely.

As with every pair of new parents, we were enthralled by this new being and by the potential he had in front of him, having seen him grow into a typical teenager we were proud as any parents could be, the joy of all that went before came crashing to an end when he was diagnosed and through his illness as the spectre of possibility that he may leave us sooner than most became a real possibility.

And on days like today, the knowledge of what he was, coupled with the experience of seeing him become who he was, is marred by the reality of his passing and the wondering of what he might have become, today though is a day to celebrate his life, albeit too short for our liking; but its true to say that he was an old soul and he lived more in his 22 years than many do in a lifetime, he was inspirational to many and there are people whose lives he touched and whose lives are improve simply as a result of his being.

In order to try and celebrate, I had that annual visit to Clintons et al in order to find an appropriate card for his birthday, it seems that there is a card for every occassion and every relative and even pet! But sadly not yet one for a son who is no longer with us.

So I chose a card for a son who is with us, because in so many ways he is still with us, his image is visible in so many places, both public and private and his videos are still watched by people, we're as proud of him today as we have ever been and I know he will be having the biggest of bashes up there in the skies; Mr Horns' 21 + 5 will indeed be a biggie I'm sure! I'm not drinking at the moment as some training beckons but perhaps this evening, on a bench by the sea, a Corona may just find itself opened in honour of Mr Horn - 'The real one' x

A piece of Brighton is forever Mr Horns...

2011-02-18T10:57:00.001Z

After much too long there is now a piece of Adams favourite place that is forever his... I think he'd have liked the view and on the day it was installed naturally it was raining and I went down to sit on it and eat some chips, normally there would loads of seagulls marauding for a chip.. on this occassion there was just one... with a busted left leg causing it to limp.... go figure .. love to all

test

2010-09-19T21:51:00.001Z

this is a test

It's DUMBALL time again!

2010-09-01T10:58:00.004Z

Well, its that time of year when a bunch of people pimp up some cars and drive them a bunch of miles to have fun and raise money in the process, this years trip is in memory of Adam and to raise funds for the TCT unit at the Royal Marsden in Sutton where Adam had his transplant.

you can donate at www.raginghorn.co.uk

It never hurts to rememeber why I do this and his words here http://www.jimmyteens.tv/2008/04/25/adam-horn/

remind me of what a fine young man he was and what a fantastic outlook on life he had.... so, Adam, this ones most definitely for you ... I love you son...........

Kilimanjaro Summit now looks like this

2009-11-25T11:00:00.003Z

Well, the stickers need to be used! :-)

24 years young

2009-09-22T10:29:00.002Z

A little after what would have been his 24th birthday I realise that the ‘normal’ that I thought may return sometime soon is in fact never going to return and that the life that exists at the moment is now the new ‘normal’

And, as I was swimming the lake at Windermere again on his birthday I was recalling some of the times we had with him; anyone reading this who met him will have their own memories and it is good sometimes to recall those times and smile, most times with him seemed to be good ones, save perhaps for the times during his illness that forced us to plumb the depths of despair so very often.)

Its at times like those that the missing becomes almost unbearable, the constant ache that sits in the heart and never seems to really fade, ‘it’ll get better with time’ people say but when the emotion hits it is as raw as it ever was. It’s true that it hits less often now but it’s still as powerful. When you truly feel that the only thing that will put things right is to have your kid back, then its hard to see how things can ever be improved.

Other events that occur in life that may be sad seem to open up the same boxes that relate to him and the emotions attached to his illness and his passing.

For various reasons I recently wanted to bugger off and do something and after a short search on the net for something to try and hit the experience fix that I seemed to need, I saw a trek to climb Kilimanjaro, I cogitated for some time and felt that all so common shall I shan’t I? feeling that seems to be recurrent since his passing and then I mentioned my indecision to Jackie who mailed me a list of reasons why I should go, at the bottom was a suggestion that I watch the end of his video where he says, ‘you should try everything, you never know you might have a good time’

So on Friday this week I leave at 6.30 pm for Kilimanjaro to see if I can make it to the top and perhaps leave something there for him, my right knee hasn’t properly recovered since the skydive and so my running has been curtailed thus meaning that I truly don’t feel fit for the trek but hey ever it seems that I now have two mountains to climb! And if I make it to the summit, I shall feel closer to him for a short while…. And maybe, I’ll have a good time J

Keeping his memory alive in any way possible is something that I try to do and having recently joined the appeal board for the Teenage Cancer Trust’s South East Appeal I have attended a couple of recent appeal launches and made a speech about him, http://www.youtube.com/watch?v=cth_Dy1-tnc I never thought I’d be able to speak in public about him but as with his funeral the strength seems to come from somewhere and for that I’m very grateful.

My reminder for Adam is a robin, and I am hearing so many stories from people who see robins at odd times or when they are thinking of him, it may be nonsense but there is some comfort to be had from thinking that he may still be around on another plane and kicking it every now and then……

Love to all

Colin

NEW VIDEO

2009-02-19T18:44:00.005Z

Videos are like buses, you don’t see one for ages, then two come along at once!

Suzanne and Angela, who filmed the Dumball rally that Adam took part in during 2007 are both credited with giving us something that is of immense value in the film that was used in his Funeral, I am hugely grateful to them both, at the time of filming, no-one could have foreseen how important that footage would become as a legacy from him to the rest of us.

Suzanne is working on further footage to use to promote TCT and to raise awareness in the States and Angela has recently stitched together some footage taken of him in Brighton which, as many who have shared doughnuts and chips with him will know, was his favourite place.

This can be viewed via the following link:

http://www.youtube.com/watch?v=8mLNRaxGn-A

As ever, the boy says it so much better than I ever could.......

Adam Update 8th January 2009 - one year on

2009-01-07T18:19:00.003Z

It seems impossible that it's a year since we brought our angel home to let him leave us for the last time and end his battle to stay alive against all the massive odds that had been stacked up against him for so long. At 10 past Midnight on the 9th I hope to be lighting some Chinese lanterns and letting them rise to be close to the boy....

This past year has brought so much change and little time for proper reflection but when the emotions force themselves upon you then that’s the time you have to let them flow, and there is little that can be done to stop them anyway.

There is little that one can say that gives solace at this time and the saying, 'I don’t know how you must be feeling' is one that Pauline and I have heard more times than we care to mention, in fact, unless you have lost a child then you truly cant know how it feels. And I hope that anyone reading this who has children never, ever has to feel the way we have for the past few years, let alone this past year.

It is indeed impossible to imagine how life goes on, but go on it must, if only because he wouldn't want people to stop living normally, he would certainly want people to remember him, he told me that often on the occasions that we discussed the possibility of him dying ' I don’t want people to be sad dad, but boy do I want them to know I was here!' he would say.

As part of my small attempt to make sure people remember he was here, I was pleased to witness the final piece of work taking place in the small room on ward T13 at UCH where Adam was treated so brilliantly by the staff there. This room has had a makeover paid for by the kind donations from everyone who sent money for TCT at or for his funeral, the final piece was the wording that you can see on the wall, it is the wording that was on his tattoo (the one I didn’t want him to have!) and its literal translation is

'he, who flies by his own wings, to the skies, through difficulties'.

I think that sums the boy up and I know he would be pleased to have left his mark in such a way, his image is also on the entrance door to the room which is now available for use by teenagers and young adults on the ward to chill and have massage, alternative therapies and 'stuff, not visible in the photo is a new massage couch and other seating to make the room flexible and less hospital like, it has met with a good reaction from all who've used it thus far, my thanks to all who donated, its good to see something tangible for your money!

Simon Davies from TCT said something to me a good few months ago, he suggested that after the initial shock, we'd be waiting for life to return to normal, and that in fact, how life is now, is now normal we just have to get used to it. Wise words indeed.

I still hear his voice calling out in the middle of the night in the way he used to when he wanted something, but I rarely expect to see him on the sofa in the way that I did a few months ago, I guess that’s progress......... But there a massive piece of our lives missing that will never be returned so this new 'normal' is taking some getting used to, I feel motivated to make sure that I waste no time in getting on with life. He said himself, 'life is short and we don’t know what's round the corner so do as much as you can and try everything, you never know, you might have a wicked time'

So, if there is one thing I have learned from this experience it is to try and figure out the answer to one very simple question that I would ask each and every one of you.............What, exactly, are you waiting for?.........

Love to all

Christmas Day 2008

2008-12-25T18:49:00.003Z

"Through humor, you can soften some of the worst blows that life delivers. And once you find laughter, no matter how painful your situation might be, you can survive it."

There is little to laugh at when I think back to what we were doing last Christmas and yet I recall how much the boy enjoyed his short time with the family on Christmas day and how much pleasure was obvious in his eyes at simply being home and enjoying the simple pleasures that hundreds of pounds of hard earned money can buy by way of gadgets and things of a nonsensical nature....

This Chrismas day is a whole different ball game and one that Pauline and I shall be pleased to see the back of. I should like to take this opportunity to thank everyone who has sent messages of support and I should also like to ask you join me in saying whatever kind of prayer is appropriate for you for those who have lost or are missing someone this Christmas, in particular to Paula and her family who are tragically having the kind of Christmas that we had last year, Sophie was a remarkable girl and I am certain that she will be kicking up some dust with Adam and bossing her dad around up there!..............

Peace, Health and prosperity to all for 2009

Love to All.

xxx

Adam would have liked this

2008-10-01T18:10:00.000Z

"This is the beginning of a new day. You have been given this day to use as you will. You can waste it or use it for good.

What you do today is important because you are exchanging a day of your life for it. When tomorrow comes, this day will be gone forever; in its place is something that you have left behind...

let it be something good."

Coincidence - or the boys work?

2008-09-17T19:00:00.004Z

read the previous entry first (the blog is in chronologic order)

SATURDAY 13TH SEPTEMBER 2008 ADAMS 21+2

Have you ever had a day or a period when, without planning, there seems to be a synchronicity that joins the events of the day into one fluid apparently spontaneous thread. (for instance I would not have been here in Windermere if Simon Davies from TCT hadn’t sent out his email about doing the event and, having forwarded it to numerous people to try and gain sponsorship, if Anisa hadn’t emailed back to point out the date of the event and suggest that it was something to do and if Jackie hadn’t decided to walk 90 miles and co-incidentally end up in Lake Windermere.)

I woke on his birthday at 5.50 am.

I had set an alarm for 07.30 as it’s customary in the B&B world that is the lake district, to be ready for breakfast sharp and on time and my host for the weekend, Mike, had decreed that breakfast would be at 08.30 (I am putting on weight but having had a huge dinner the night before, I needed to set my alarm to ensure that I took on calories to prepare me for the swim (honest guv!)

5.50? Well of course! 23 years ago at 5.50 the boy was making his first appearance in the world amid much screaming and yelling from his mum.

Having enjoyed the full English preceded by the bowl of fresh fruit (its slimming you know) I met with Jackie and Mick and, after the most creative of journeys (note to organisers of Great North Swim…1 road in, 1 road out, one boat that can carry 80 people an hour, and 2200 participants plus hangers on and spectators makes for a logistical challenge of epic proportions – will be improved next year I’m sure), We found ourselves in the lobby of a very fine hotel meeting Simon and Geraldine, Simon handed me a package that a kind soul who lost their child a while ago had sent for us, it contained 6 Chinese lanterns and, knowing that some friends had set some off in Thailand at midnight on new years eve for Adam I immediately determined that we should let them go on the lake at sunset ‘he would like that’ I thought.

Its odd; we all seem to do a lot of ‘he would like that, or would have liked that’ I guess it’s a good way of keeping his memory alive, I still talk about him a lot and engage in conversation with him about things.

The Great North Swim is a mile open water swim in Lake Windermere, the lake temperature as we all jumped in to ‘warm up’ for 10 minutes was 15.1 degrees. (Note to GNS organisers, WARM UP? 10 minutes in the water to get used to the temperature? ARE YOU MAD!!!)

Whilst treading water I spoke to a couple near me and we were all bemoaning the fact that it was overcast and cold, I announced with all authority that the sun would come out as we lined up for the start, naturally they looked at me like I was mad, ‘trust me’ I said, ‘I know it will’

I knew it would because, right since the day that we chose his grave and as we walked towards it the clouds parted and a beam of sunlight seemed to track across the cemetery and stop over the grave, every big event for Adam has had good weather or just at the appropriate moment the sun has come out.

We got out of the water and, as we stood on the start line, sure enough the clouds parted, the sun shone and we were bathed in the warmth of the sun, I looked at the couple, they looked at me (oddly). I smiled, they smiled back, I looked across the way at Jackie, she looked at me, then upward and smiled the same knowing smile as me…. And, as we entered the water, I felt that the sun would shine until the end of my race and then it would rain (I decided not to voice this feeling as the others would really think I was crazy!)

So, I swam, with a couple of hundred others in my wave, quicker than I imagined I would, but slower than pretty much everyone else, save for the woman who, as we got to the last buoy and turned for the shore, was behind me and said, ‘oh look here comes the rain’ … go figure!!!

There were other ‘coincidences’ during the day but suffice to say that by the time sunset came, Jackie, Mick and I were sitting on a couple of large rocks that were in the lake and as we watched the sun fall and the light fade I received a text from Pauline who was having a pretty rough day saying that she was driving but watching a beautiful full moon whilst driving, no sunset, just dark, clear sky and a full moon, with a ‘sad’ face.

We looked around us and marvelled at the fact that we had no moon at all, just a beautiful view

of the sunset over the lake, it got darker and we sat, absorbing the atmosphere, waiting for darkness before we lit the lanterns. There seemed a magical quality to the time there and suddenly, without warning, and fast enough that you could see if move, the fullest and brightest of moons emerged above the hillside to our left. Orange sky sunset to our right and full moon to our left.

As the hairs rose on the back of my neck I knew that Adam would have known how much that kind of night meant to me and how much I enjoy the spectacle of the displays mother nature often lays on for us all.

We lit the lanterns and were amazed at how high they soared and how great they looked as they glowed a flickering orange from the flame that gave them the life to rise and stay aloft.

I did my modern man thing and shed some tears as my mind was filled with thoughts of Adam and the pain deep into my soul that I can only liken to feeling like my insides have been torn out of my body rose, it was a mixture of the sadness of missing him and the feeling of closeness with him that was new to me.

Jackie and Mick quietly disappeared and left me alone on the rock, enjoying the solitude, feeling the atmosphere and watching the occasional bat fly low then skim down and snatch a midge or mosquito .

And there I sat, crying, missing, longing and wishing; feeling as if Adam had stage managed the whole day to ensure that I was there, by a series of co-incidences, on a rock over the water in the sunset feeling closer to him than on any day since he died….

As I left the rock I felt a calmness of mind and an enormous positivity, I took a call from a friend and was re-telling the events when I thought to myself that of course, having helped me in organising a few events, Adam would have wanted a big finale…..Just as a firework display started on the top of the hillside…. BANG ON SON!!

It was hard to leave the lake as I didn’t want the feelings to end… but having used endless calories I felt justified in indulging in a huge dinner again, before planning the next full breakfast (it’s only polite you know !)

And, the following morning, still full of the previous days events , I walked down to the lake to try and recapture some of the feeling as if by doing so, I would re-connect with Adam once more, but when I got there, there was no feeling, just a sense of having achieved some kind of mission.

The strange thing was that I didn’t realise I was on a mission before I got there and it was only after the event that I was able to reflect that perhaps I was always destined to go there and be there on that day and at that time. Thoe of you with a spiritual bent may understand it better thean I.

To all of the people near and far, who had a hand in me being there and experiencing something that was truly magical, you know who you are and I thank you from deep in my soul ,for you contributed to something priceless that I wouldn’t have missed for the world.

And maybe, just maybe, I should be thanking our beautiful son for knowing well what his dad needs nd finding the energy to move a few pieces of our lives around …

Love to all……

There are some photos on the blog at http://www.adamhornblog.blogpsot.com/

12 September 2008 - Lake Windermere

2008-09-17T18:51:00.002Z

7.30 PM, FRIDAY 12 SEPTEMBER 2008

As I sit here on the shore of Lake Windermere, watching the gentlest of sunsets, the sky to my left is orange behind the clouds and to my right, simply clouds, I am reminded of what a difference there is between this evening and that which we had 23 years ago.

About this time I had taken Pauline into the hospital for what was to prove the evening before our son was born, it’s a long story and often told but after much screaming and yelling, around 5.50 in the morning he came noisily into this world,

Those of you reading this who have had children will understand why I fell in love with him at that moment and will know the feelings of pleasure after the long wait and the hoping and the worrying are over, the sense of relief that all is well and a healthy child is born, then, after the initial excitement dies down, there are feelings of potential and a life that has been created and is to be nurtured and protected and most of all, lived.

The years of nurturing and preparing ones child and developing them, in the best way you can, to be fully rounded people with a place and a contribution to make in society seem all the harder to fathom when ones child is taken so early, there have been so many hours spent searching for the reasons for this brutal cessation of the love affair we had with our son.

Of course, logic suggests that there is no point on such speculation as it has happened and there is damn all anyone can do to change that. But logic doesn’t always prevail these days and emotion seems to get the better of me so often. How much worse this time is for Pauline as a mother is something only another mother can know, there is a difference between mums and dad’s, there has to be, no matter how much a dad can love his child, a mother had that person grow inside her and begin to bond from the moment of conception.

Its darker here now and the contrast between the scene left and the scene right is more evident,

I feel similarly that the contrast to my life backwards and my life yet to come is huge, Adams presence in my life was so large that the gap he leaves seems impossible to fill, and yet, I know that it is indeed impossible to fill and it would not be right to fill it. Life for me, for us, has changed; and the notion of it returning to normal is misguided; for this is now normal and it is simply a case of readjustment…. Simply? Well, in truth, not simple at all, but unavoidable.

I feel more balanced when I am near water, he liked water and it is possible to feel him closer to me in peaceful moments such as this, although what the others walking past make of this guy sitting on a bench, crying and typing away on his lappie in the drizzle, I neither know nor care, the drizzle I can handle, but the damn midges are beginning to bug me. The prospect of an hour in the cold water of the lake tomorrow seems fine about now; this may well change by the time the swim comes of course!

Adam - 21+2 13 September 2008

2008-09-11T21:31:00.002Z

On Saturday Adam would have been 23.

Those who have lost someone say that it is the anniversaries, particularly in the first year, that are the worst times. I guess it’s a good day to be busy.

In order to be busy, I am heading up to lake Windermere to swim a mile in the lake as part of the Great North Swim along with a couple of thousand other lunatics, it seems that the water temperature is around the 15-16 degrees… I checked yesterday and the aircondtioning in my car has a minimum temperature of 16 degrees!

My sis, Jackie has spent this week walking in the lake district to take part in a 90 mile trek to raise funds for TCT and there are others who are variously taking part in a number of other events such as swimming in the Thames and, in the case of some of his mates I’m sure, drinking a whole load of lager!

He said to me often, ‘dad, I don’t want people to be sad, but I do want them to know that I’ve been here and to remember me’ so I would say to everyone who still reads the updates, take a moment, close your eyes and remember the boy at some point during the day, he will be up there, kicking back and winding up a few angels I just know it!

And if anyone finds themselves in the premises of somewhere that sells alcoholic beverages, then the tradition we established on Dumball 2008 is great to uphold.. the first drink of the night is a toast to ‘the boy’

I know that Saturday night will involve a beer or two for me and I take this opportunity to raise my glass in advance and say ‘ thanks son… for brightening our lives and making us all smile so often’

Love to all.

Colin

I'll have a medium please

2008-09-04T13:53:00.003Z

I had one of those regular, ‘Adam’ moments just now and, as I often do, took a while out to dwell on thoughts about him, I often sit and watch his video or re-read the writings on the blog, some days its comforting and some days not. Today not sadly, so I write this amid mountains of Kleenex and whilst watching a blurry screen through tears.

So many people that we meet use those time honoured words ‘I can’t imagine how you feel’ and in truth I guess that unless you are or have been in this club, you truly can’t imagine how it feels.

The grieving process is a weird one and the thoughts that prompt outbursts of emotion are manyfold, varied and unexpected at the best of times. In particular I am most vulnerable to tears when people are kind or giving praise.

I saw a medium yesterday, one that I’ve seen before and she got as close to convincing me that she was properly in touch with Adam as anyone ever has, I guess the thing about believing is that there comes a point where you have to either trust it or not, being someone who needs proof and evidence for anything that I am unsure about it is hard to convince me but when I asked how his leg was and she replied, ‘not sure if this means anything to you but he says its back’ I was as near convinced as I think I can be.

She also mentioned him holding an electric guitar, she said a blue one, and those of you who are young enough to be on facebook may have noticed that I recently added a photo to his tribute page that shows him holding an electric guitar, not a blue one, a yellow one but hey the communications from the other side aren’t by Vodafone you know. (that’s probably why they are so clear and the signal holds)

SO… for anyone who does believe, then Adam is apparently having a ball, in a place where you get everything you want, helping other children with their journey across the worlds, only experiencing pure love and none of the negativity of human emotion and is whole in body again and helping many of us from afar, he is also bashing me around the head for feeling guilty about him dying and he thinks I need a holiday!

The medium said that he told her about the unique (some might say sick) sense of humour that he and I shared and he says that that connection is still there.. She then said he is taller on the other side… anyone who has witnessed him and I standing back to back in front of a mirror arguing about who was the tallest might just see his personality coming out there! I am now waiting to see him on the other side and find a huge mirror!!!

I undoubtedly gained some comfort from the reading and if she is to be believed then he is an old soul with a cheeky smile and a great sense of humour and a compassion for his fellow man…

Yep .. that sounds like my boy…

Love to all

Colin

6 months on

2008-07-08T07:18:00.001Z

On the eve of the 6 month anniversary of Adam leaving for his after party it seems almost impossible to recall those joyful moments in his life that filled us with so much pleasure, and coming to terms with the notion that he wont just be dragging himself out of his pit sometime soon and laying on the sofa asking for a cup of tea seems, at times, completely unbearable.

If I thought that I had plumbed the depths of human emotion whilst he was battling with his disease then boy was I wrong! It seems that every day can bring something, some apparently small reminder of what could have been, what should have been, what will never be… and the wishing and longing tears deep into ones very soul, then without any particular warning the tears can flow, my apologies to anyone who has been with me when this happens.

I’m not surprised anymore when I hear of people who have taken their own lives after a child has died for the almost constant pain and grief would be for most people a continual struggle and for those who may be of less stable stuff then not having to live with it would be a pretty good option.

But I think that you fall into one of two camps, either you’ll sink or you’ll swim… and I know that he would not want people to put their lives on hold or to sink, indeed he would rather that people prospered as a result of their learned knowledge from having known him. In his own words, ‘I don’t want people to be sad ..but I do want them to remember me!’

It is hard to make sense of the why’s and wherefores that surround the death of someone such as Adam, there are so many platitudes that people use and each one, whilst well meaning merely serves as a reminder of the enormity of the loss, At times I truly wish I had a faith as it might make more sense if I really genuinely believed their was a reason for all this.

And the question that remains is always the same one… Why? Why someone so genuinely and clearly ‘nice’? I have never met anyone who didn’t have good things to say about Adam and most people felt their lives were improved in some way by meeting him. So what logical reason is there that he would be taken when there is probably a list as long as your arm of people who are less deserving of their place in this world.

I was with someone about my age the other day who had never actually met him but said that she had watched his video on youtube again recently and having heard his words she had determined that she would make some changes to her life plans and actually do some of the things she had always planned to but never got round to…. And for a moment, for the most fleeting of moments I wondered if maybe, just maybe… that was the answer to the question…….

In his own words……

“it’s a cliché but life is short, You can kinda do anything if you set your mind to it………………..

All you can do is try your best…..and you might have a wicked time”

Love to all

Colin

The boy suggested....

2008-06-16T18:52:00.002Z

Well, indirectly he suggested I guess.

You may know that Adam was open to the notion of what i refer to as 'flaky' things i.e. of a spiritual nature.

As he lay dying I spoke to him about making contact with him and I recently went to a medium who, amongst other things said that he was suggesting that i should carry on with my writing.

I used to keep a detailed diary of his treatment when he was first ill but i didn't when he relapsed, not sure why but i just didnt feel like it.

So, assuming ido this, my problem is... what to write about?

Answers on a postcard please or via the comments section, I did think that I might start a question and answer section and suggest that anyone ask any question on any subject and i'll answer it as honestly and as directly as I can.

Love to all

Colin

These words may have been written with the boy in mind!

2008-04-24T11:59:00.001Z

If I can throw a single ray of light across the darkened pathway of another; if I can aid some soul to clearer sight of life and duty, and thus bless my brother; if I can wipe from any human cheek a tear, I shall not have lived my life in vain while here.

If I can guide some erring one to truth, inspire within his heart a sense of duty; if I can plant within my soul of rosy youth a sense of right, a love of truth and beauty; I shall not then have lived in vain while here.

If from my mind I banish doubt and fear, and keep my life attuned to love and kindness; if I can scatter light and hope and cheer, and help remove the curse of mental blindness; if I can make more joy, more hope, less pain, I shall not have lived and loved in vain.

If by life’s roadside I can plant a tree, beneath whose shade some wearied head may rest, thought I may never share its beauty, I shall yet be truly blest – though no one knows my name, nor drops a flower upon my grave, I shall not have lived in vain while here. - Anon

the 49th Day

2008-02-27T20:23:00.000Z

There is a Buddhist ritual that takes place 49 days after a person has died, Claudia kindly undertook the ritual and sent the following Email by way of feedback.

Love to all

Colin

Subject: RE: 49 day blessing

I did the 49 day blessing for Adam all very buddhist smells & bells etc. & in the quiet reflective bit I felt quite real a connection with Adam, his source, soul, spark whatever you want to call it anyway he seemed to be curiously hanging about watching what I was doing listening to the bells & prayers of thanks for his life & for his future incarnations (if you believe in that sort of thing) I got a strong sense of him being really really happy joyful & free & so so grateful & full of love for you both & the rest of the family. That his life although short, truely was complete, a sense of he did what he had come to do. I then saw lots & lots of flashes of him laughing & of some very very funny moments in his life, I saw one a story he had told me about: at a fund-raising black tie dinner where he had met Fergie duchess of york, & on hearing her ask what she could do to help the teenage cancer trust he suggested quite loudly she could always get her tits out!

So by the end of the blessing ritual I was laughing & had a huge smile on my face! he certainly knew how to do that well!

lots of love to all

Claudia x

a month on... youtube video

2008-02-08T21:40:00.000Z

It’s a month tomorrow since Adam joined the party in the sky and despite missing him more than I thought possible I hope he’s having a ball wherever he is.

A number of people have asked if they can view or get a copy of the video from the funeral and I did try a few auto downloading files for mailing to people, some worked and some didn’t so I have elected to put the file in its entirety on youtube.

http://www.youtube.com/watch?v=gAbDAXOk6bk

For those of you who were there it will be, I hope, a pleasing reminder of his words and for anyone who wasn’t there then it will give some insight into how he felt about a few things and also a brief insight into the antics of the Dumball rally.

Love to all

Colin

Post Funeral news

2008-02-08T10:33:00.000Z

There is a weird calm that has settled since the funeral, I think that the calm is simply a result of not having to live with the daily fear of what is going to happen as the worst has already happened.

I'm going to stop apologising for not saying thank you to everyone who sent messages or donations but please know that we do really value all that has been sent and the very real help that people have given.

The few auto download links that i sent out to the video file shown on the day seem to have worked and not worked in equal measure so I shall try to put the files up on a webpage for download in the near future.

The total donations for TCT are very nearly £4000 now, thats absolutely brilliant, thanks again to all

love to all

Colin

Funeral or 'After Party' arrangements

2008-01-18T20:37:00.000Z

ADAMS FUNERAL or 'AFTER' Party!

Will be held at St Michaels Church, Milton Road Wallington Surrey at 10.00 on Thursday 24th January. If you wish to attend at Church, please be there by 09.45 there is a small car park but by choice please park in the side roads to allow the funeral cars space in the car park

All are welcome but please give priority for seating to family and close friends, the committal will be afterwards at Bandon Hill Cemetery. If you are attending the committal, please carry a single white rose.

Those wishing to celebrate him will be welcome at THE RECTORY in Brighton Road Purley all day where the family and close friends will join you after a private reception at the family home.

There is no dress code but as Adam would have said, ‘Dress to impress’

Whilst we wouldn’t prevent anyone buying flowers, we’d prefer donations to the Teenage Cancer Trust, cheques Payable to ‘Teenage Cancer Trust’. UK taxpayers should write ‘I am a UK taxpayer and wish to claim gift aid’ on the back of the cheque.

We have no idea how many people will attend so apologies if its standing room only!

Adam update Thursday 17Jan 08

2008-01-17T19:12:00.000Z

Adam is now in the careful hands of Niki at Trueloves in Chipstead Valley Road Coulsdon.

They are open from 9am till 5pm daily and from 9am till 1pm on Saturday. Niki will be happy allow access to the chapel if anyone wishes to see him. if you do visit, feel free to play the cd if its not already on

It isn’t necessary to make an appointment but if you are travelling a long way perhaps call beforehand on 0208 660 2620.

Timings for the Funeral are nearly complete so I’ll do a further update soon, many have asked about dress code, Black is not necessary but also not banned, the boy wanted a celebration of his life and would have said ‘dress to impress’

All are welcome and formal invitations will not be issued. If you know you are coming then please let me have a quick email so we can get some idea of numbers

Love to all.

Colin

Adam update - the 'After' party

2008-01-16T23:24:00.000Z

We have now confirmed the venue for the funeral but as yet the timing has to be confirmed.

The Service will be held at St Michaels and all Angels Church

Milton Road
Wallington
Surrey
SM6 9RP

The committal will then be held at Bandon Hill cemetery, around 5 minutes drive from the church.

We expect the service to be starting at some time between 09.30 and 10.00, dependant on the funeral directors. It’ll be the first time anyone’s seen the boy that early in the morning for ages!

For those who may wish to come, Anyone attending on the day should bring a single white rose

Whilst we wouldn’t stop anyone arranging flowers of course, it seems more appropriate that donations to the Teenage Cancer Trust in his name would be more helpful, cheques can be sent directly to them or to us at home and should have, I am a UK taxpayer and wish to claim gift aid on the back of any personal cheques as this allows the charity to get an additional 28% on top.

Watch this space!

Love to all

Colin

PS The irony of me now having to pay for Baileys insurance monthly wont be lost on many, in fact there has been so much interest in him that I’m thinking of starting a ‘BAILEY BLOG’

adam update sunday 13 january

2008-01-13T13:08:00.000Z

Hi all

There’s not much that’s funny about all this at the moment but I just thought you’d all love to know that it appears that in the very near future I’ll be taking over paying for Baileys regular insurance premiums!

The boy is jerkin my chain still! Somewhere he’ll be wetting himself over that one!

Having said to everyone that we’d like some space, the flipside is many people are uncertain when to make contact, the simple answer is whenever you feel right.The arrangements for his Funeral are still coming together and I’ll issue full details once known, all will be welcome, many people have asked about flowers/donations and the like and we do have the following wishes.

Anyone attending on the day should bring a single white rose

Whilst we wouldn’t stop anyone arranging flowers of course, it seems more appropriate that donations to the Teenage Cancer Trust in his name would be more helpful, cheques can be sent directly to them or to us at home and should have, I am a UK taxpayer and wish to claim gift aid on the back of any personal cheques as this allows the charity to get an additional 28% on top.

We are just hovering at the moment about the location for the service as the original venue it seems is quite small and we are not sure of numbers.

Watch this space.

Love to all

Colin

Adam update 11 January 2008

2008-01-11T08:57:00.000Z

I thought I might stop doing the updates but, for now at least there are some items of note that may interest those of you who have been on this journey with us for so long.

It isn’t possible to describe how we are feeling, 7 years is not long enough to prepare anyone for this…..

Over the years our house has looked more and more like a chemist or hospital, those of you who have been here will know just how much space the various pieces of kit and paraphernalia take up.

We had always thought we would celebrate his recovery by finally getting rid of the tall multi drawer unit that we got when he was first ill and removing all the medical bits and bobs from the house.

Pauline couldn’t sleep and this morning as she was woken as we both have been so many times by the sound of Adam calling her from his bedroom………..She got up at six o’clock and I could hear her pottering around downstairs, after a bit my curiosity got the better of me and I found her bagging up all the ‘stuff’, we talked about the method of disposal in a logical and mature manner, we both found a lot of anger associated with all the bits and bobs and their intrusion into our lives for so long. And so, as it was pouring with rain outside we got some highly flammable liquid, made a pile including the multi drawer unit (very good value by the way and available at a B&Q store near you!) and lit a bonfire from a not particularly safe distance!

And as the flames grew bigger we found more ‘stuff’ that reminded us of his disease to put onto the fire and we stood in the pouring rain watching a pretty good fire burn, then some of the bottles and closed containers decided to do their thing and make a mini firework display all of their own………….

The boy would have liked that!

The date for his Funeral is Thursday 24^th Jan at 10.00 am in Wallington, precise details to follow… I know, I know, its along time away but apparently over Christmas lots of people are dying to get into cemeteries!

Love to all

Adam Update 9 January 2008

2008-01-09T14:15:00.000Z

Our Angel came home yesterday evening by way of a special present for my birthday; he left us to join some other angels just after midnight and for the first time in nearly seven years looked truly peaceful. He spent the previous afternoon quite lively, laughing and joking with Karen and Nell at the hospital and he got his wish to come home and see Bailey.

His life was short but touched many people here and all over the world. I know of no one who ever met him that didn’t feel his presence.

We know that many will want to contact us and we are happy for that but in the immediate term we should like a brief period to indulge ourselves, I’ll update with details of his funeral which I suspect may include some white tuxedos and champagne…..to comply with Adam’s wishes, does anyone know where I can get a star shaped coffin in glossy white with a playboy bunny on the side?! He always said that when he went, he wanted to take up as much room as possible!

The Latin writing on his his tattoo reads, ‘Alis Volit Propriis, Ad Astra, Per Aspera.’

HE, WHO FLIES BY HIS OWN WINGS….., TO THE STARS THROUGH DIFFICULTIES,.

Thursday Jan 3 2008

2008-01-03T18:40:00.000Z

Adam had a rough night last night and so I went into the hospital early this morning at his request, by the time I got there he was a little calmer, having thrown up a load of blood which was pretty frightening for both him and Pauline, he has had a pretty ropey day and has mainly been out of it on morphine and pain killers.

Then just for good measure, the red patches appeared again on his leg, these signify infection and are no doubt a result of his neutropaenia allowing the previous infection in his leg to restart.

So, after a tough week followed by a day from hell yesterday he now has to go through this latest infection, any one of these issues would be taxing but the multitude that he constantly faces seems to be enough to test the patience of a saint.

He has been upset today, I think the combination of the pain and his inability to move around get him down and his usually bright self is missing, no wonder really, his ability to wake up each morning with a smile on his face is phenomenal and humbles me often.

I met a new member of the club the other day and was giving her some advice on how this game goes, I found myself repeating the two simple pieces of advice that I was given when I too had not yet got my hospital air miles card validated.

1. go with the flow

2. take each day at a time

So, for now I think I need to take some of that advice myself……………

update 2 jan 08

2008-01-02T23:10:00.000Z

Adam has been losing around 2 pints of blood a day since Christmas Day and today the docs decided that he should have his endoscopy to see if it was possible to find the bleed and indeed repair it from inside.

The procedure was due for the afternoon and so I was at home for the first night since Christmas Eve last night, had a lazy start to my day planned, ran a bath., made a cup of tea……. Then got a call from Pauline around 09.40 who said, they are doing it in half an hour!

As I was arriving at the hospital at 10.50 having exercised my running skills at every opportunity, Sarah, who I had called as Adam wanted here to be with him but was only just awake when I rang, also arrived having chosen what was obviously the more efficient route. Doh!

He had the endoscopy, should have taken 20 minutes and after and hour and fifteen I was fretting, they found a number of ulcerated sections of his gut and managed to cauterize some, clip a couple of others for good measure but they returned with him to say that it was very complicated and they were unable to close of the largest bleeding vessel so they would need to consider surgery or alternative treatment, Surgery not being an option as a result of his low platelets, we found ourselves bouncing around from floor to floor to find the ‘it’s down the corridor’ x-ray department that the nurses had sent us to in order to check the considerable pain he was in wasn’t anything sinister….

Eventually, we ended up 25 minutes later at the same CT scanner we started at, having been told he needed an urgent x-ray to see what the problem was.

CT scan over and the docs came to tell us that they recommended an angiogram procedure to place some plugs in the Artery that leads off his aorta to stop the blood flow completely to the area they suspected it was coming from. It would take just half and hour to an hour and they would use a vein in his groin to feed a pipe up to his aorta then find the appropriate artery and place one or more plugs in it.

2 and a quarter hours later we were all in the waiting room apoplexic with worry and speculating on exactly what could have gone wrong (note to self…. Try to remember not to worry till you have something to worry about!)

Eventually the boy returned looking a bit battle weary and very hungry; he was in a fair bit of pain and discomfort but seemed to be in good spirits. The docs told us the procedure went well and we will know by tomorrow how successful the procedure was.

So…that’s another of his nine lives gone and assuming the bleed is stopped there’s just the small matter of his rapidly advancing leukaemia to deal with, he had chemo yesterday and some more tonight, hey after a day like today there’s nothing better than a glass of the NHS’s finest Cytaribin….. 2007 was a good year I believe!

Love to all

Colin

new years eve

2007-12-31T13:42:00.000Z

"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

Colin

Adam Update - 2008 beckons

2007-12-30T23:00:00.000Z

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.

Adam update 28 December 2007

2007-12-28T10:41:00.000Z

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

Colin

Adam update Thursday 20th december

2007-12-20T12:57:00.000Z

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!

Colin

adam update sunday 16 dec

2007-12-16T23:25:00.000Z

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

Colin

adam update 12 december

2007-12-12T21:57:00.000Z

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

Colin

Adam Update Thursday 6 December

2007-12-06T20:03:00.000Z

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!

Colin

UPDATE 30 NOVEMBER

2007-11-30T23:15:00.000Z

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.

Mr Horn is back in the building

2007-11-21T22:18:00.000Z

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

update Sunday 18th

2007-11-18T12:16:00.000Z

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.

Colin

2007-11-16T21:02:00.000Z

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

Colin

please drive carefully

2007-11-08T19:08:00.000Z

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 www.adamhornblog.blogspot.com he took Mick at his word!

2007-11-08T19:02:00.000Z

2007-11-08T18:52:00.001Z

MORE.....

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

Colin

easy does it

2007-10-24T21:31:00.000Z

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

Colin

have bailey will travel

2007-10-10T19:38:00.000Z

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!

Adam update 22 September

2007-09-22T21:15:00.000Z

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 21^st year.

He had a ball at his party and we followed up with a family do which followed Nell’s Christening and Dan’s 40^th 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

Colin

2007-09-03T21:26:00.001Z

Mr Horn's 21st+1 Champagne & Hollywood

2007-09-03T21:21:00.000Z

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!

29th August, one step forward..... 2 steps back

2007-09-03T21:04:00.000Z

o the update

Update to the update

Saw the prof yesterday and sadly, the more substantial test shows the morrow to have blast cells in again.

The cells appear to be of the AML type rather than the existing ALL type so there are some big decisions to make pretty soon.

Déjà vu?

Love to all

Colin

Friday 23rd August

2007-08-24T09:20:00.001Z

Apologies if this takes a while to get around, dad’s away this week so the normal distribution method is not in place.

Adam had a consult this Tuesday with the prof and we got the results of the initial test on his bone marrow aspirate from last week, this test showed no bad cells which is excellent news, we hope to get the results of the detailed chromosome test next week and if this too is clear then we can once again breathe a small sigh of relief for a while.

The prof was quite surprised and he said that they are not sure exactly what has done the trick but he thinks it is the Rituximub antibody treatment and so they will review the ongoing treatment next week.

It’s a fine balance between increasing the dosage of the drugs which has a detrimental effect on his bone marrows production of normal cells such as platelets and ensuring that a high enough dose is given to keep the disease at bay.

In addition, we are keen to use any window of opportunity whilst his marrow is normal to try and get some further healing on his exposed heel bone to his right foot. The hyperbaric oxygen option is still being considered but at £20k or more one gets the feeling that cost may be an issue for the health trust. Other possible new options are to use a platelet rich compound that uses donor platelets in high concentration applied to the wound to try and stimulate the growth of new tissue.

It’s all complex and a very finely balanced situation. But for now at least, his focus is on planning for his birthday so his mind is focused!

Our thoughts go out to Dan, Karen and Kay at the moment, Dan’s dad passed away yesterday, he and Kay managed their dream of giving up on the rat race, moving to Australia and living the life they wanted, how many of us truly get to do that I wonder? John.. good on ya mate! We’ll chuck another shrimp on the barbie for you…..

Love to all.

update thursday 16th august

2007-08-16T13:52:00.000Z

And this time we waited till the docs said we could go!

Adam was discharged yesterday, there has been a bunch of activity over the past week or so, not least because we found that he had contracted MRSA in his foot whilst in hospital!

He came off the I/V antibiotics on Tuesday and had a bone marrow aspirate taken yesterday before we left, there results of the aspirate will determine how he is doing with the disease. Fingers are crossed all over the place as you imagine!

Watch this space………….

Love to all

Colin

gis a beer

2007-08-06T20:40:00.000Z

Adam asked to leave hospital on Wednesday last week as he was bored and fed up; the docs were reluctant as they felt he should have had a day in after the IV antibiotics stopped to allow for some observation.

He had a pretty good day Thursday and went out with a mate for a drive, whilst stopped in a car park they watched a guy who was clearly high on drugs dancing like a loon, he come over to them and spoke for a moment before swinging his carrier bag with 6 cans of beer in it straight into Adams face and then running off.

So Adam looks like he’s done ten rounds with a boxer and his modelling days may be numbered, some people do get it hard!

His facebook entry says, ‘Adam is bruised and recovering from a face full of Stella – Literally!’ he doesn’t want a fuss made over it though.

His foot got progressively worse over the weekend and he has been in a lot of pain with it, we decided this morning that although he didn’t have a temperature, he should go into UCH for further treatment.

So back in for a few days, this time we might wait till the docs say he can go…. And as I write a have just received a text from Pauline to say that he spiked a temperature at 7.30 this evening so the infection is trying to take hold

On the subject of his heel which has gone backwards significantly since his chemo, I had a long talk with his foot doctor this week and we have been trying to find creative ways to grow new tissue in a guy who has no bone marrow, there is a possibility that if we can get it funded he may be able to use the hyperbaric oxygen chamber in London that is used to treat divers with the bends, apparently the increased rich oxygen that is forced into the blood can increase the quantity of a particular type of cell that he needs to start the repair process.

Watch this space

Love to all

Colin

back into UCH sunday 29 july

2007-07-29T12:25:00.000Z

Sunday 29 July 2007-07-29

Adam spiked a temperature in the early hours of Saturday morning and after a lengthy watching and waiting exercise we decided he needed to come into UCH for checking, when he is neutropenic, when the slightest germ can be damaging to him, sometimes the germs the normally carries and that don’t affect him day to day become threatening to him as his immune system is unable to react to the threat.

So, we finally arrived at UCH around 4pm and after some initial investigations, he was admitted to T16, his temperature had normalised earlier it he day and we had thought perhaps it was just a blip and he would go home again, however during the night he spiked a temperature again and, on inspection there is some apparent infection to his heel, this was the most likely site for infection and one of the reasons that we were keen to prevent him from becoming neutropenic.

He now has some significant pain from his heel and is on I/V antibiotics which will most likely mean that he’ll be in hospital for up to a week, he is concerned already that his ‘hospital head’ is starting, that is the head that gets fed up as he’s in hospital and effectively out of action and away from his mates and his home, all of which provide him with normality on a day to day basis.

So, for now, I’m in with him, Pauline is coming in later to let me go to work during the week and we’ll see how things go once the antibiotics start to kick in.

Love to all

Colin

Thursday 19 July

2007-07-19T06:45:00.000Z

Adam was rudely awakened this morning in order to go into UCH for more chemo, the antibody drug and also some platelets, his platelet count is very very low, the norm for an adult is generally between 250 and 400 and his have been running at around 6! This means that he bruises very easily and can bleed even easier, especially from existing wounds such as his heel.

This will be the third of four treatments and he tolerated the antibody drug (Rituximub) much better last time so we are hopeful that he will be in and out in a day again.

His leg gives him proper independence again and this means that he is often out till all hours in his car, the independence doesn’t yet extend to making his own or our tea though!

We are now at the stage in the chemo where his bone marrow should be being depleted and hopefully the leukaemic cells will be too, this is also the point where he risks infection, the chemo he is on is chosen because it is less likely to leave him neutrapenic which would potentially cause his significant problems with his heel. He is likely to need to go in again on Saturday for a top up of platelets and then again on Tuesday next week for more platelets.

That’s all for now.

Love to all.

Colin

Adam Update Friday 6 July

2007-07-06T08:55:00.000Z

We took Adam into UCH yesterday morning to discuss the ‘plan’

The doc reminded us that Adam is in a very difficult place having become resistant to the Glivec and now the Dasatinib and that their plan is to try and get him back into remission in order to prevent the disease taking hold again.

His situation is severely hampered by the still exposed bone of his heel which means that the hardest hitting treatment can’t be used otherwise he will lose his immune system and likely get a secondary infection in his foot which would very quickly become life threatening.

‘Rock, hard place’, I hear you say…..

The initial plan is to use an antibody therapy called Rituximub that is normally used in cases of Non-Hodgkin’s lymphoma but has shown some reasonable results with ALL ph+ cases, this will be in conjunction with chemotherapy and was to be given yesterday then once a week for a month.

Adam had a significant reaction to the antibody infusion and it was stopped then the dose rate slowed down to the lowest, it was then determined that it would be best to simply run it at the slowest rate and keep him in overnight as this meant a 15hour treatment, then they would give the actual chemo then let him home assuming he is well.

So, at the time of penning this, he should be nearing the end of the antibody infusion and waiting for the chemo to be prepared.

Sitting watching your apparently otherwise healthy kid being pumped full of chemicals that are designed to kill bits of his body is an awesome thing and not one I’d recommend to anyone but for the time being there is at least some treatment to be had.

As days go, yesterday wasn’t a great one.

Love to all

Colin

Adam Update Wed 04 July

2007-07-04T10:17:00.000Z

We met with the prof yesterday briefly and he told us what I think we’d all suspected, that Adams bone marrow test came back with a bad result.

There is no plan as yet but the idea is that the team at UCH will determine a plan today then we will admit Adam back into hospital later with a view to probably starting chemo again urgently.

Adam asked me if he can hear the plan before deciding if he wants to go along with it….

He went out with his mates last night, rang me at 4.30 this morning from the gutter at the end of our drive where he had fallen over, due in no small measure to the obviously huge quantities of alcohol he had consumed in the pub and bar after! …. .. I pointed out that his plates were dangerously low so falling over wasn’t a good idea, he just smiled, dribbled and told me he loved me!.......... before biting me on the arse!

He truly don’t like it easy this kid, sadly there will be more to come I’m sure..

Dad’s Pc is playing up at the moment so I am hopeful that you will get this Via Jackie, if you get it duplicated then apologies. It’ll be on the blog too.

Love to all

Colin

ADAM UPDATE Friday 29 June

2007-06-29T19:52:00.000Z

Spent most of today in UCH with Adam for a bone marrow aspirate, he had a blood test on Tuesday which showed his platelet level to be very low, hopefully there will be an innocent reason for this but as ever, we’ll spend an anxious few days waiting for the initial results and hoping they are clear and then a further few anxious weeks waiting for the results of the chromosome test

He has been using his leg in conjunction with crutches and is managing quite well, he walked into the pub recently which is something he has avoided doing for ages until he could actually walk in himself, the new leg is very realistic and has one of his trainers on it, the bad foot has a weird shoe on it so everyone assumes its that one that’s got something wrong hence the crutches!

So, once again, we sit and wait, try to be normal and get on with life……

Love to all

Colin

dumballers return

2007-06-19T19:18:00.000Z

Hi all

I know, I know, I was supposed to send updates on the move from the rally but I left the laptop charger in a hostel early on so that put paid to a lot of my great ideas!

We had a ball! The week went like a flash and the car got us there in style and in good form.

It’s impossible to write enough to fill everyone in on how the trip went but suffice to say that Adam had a great ime, he enjoyed meeting all the people and visiting the various places!

I have uploaded the photos I took last week to an album at http://picasaweb.google.co.uk/colinhorn1/Dumball

I make no apologies if any of the photos are considered distasteful or offensive, that’s part of the plan with the Dumball!

Adam had his stump cast on Monday and we hope that he’ll have his initial leg fitted next Monday, he is really excited by this as it is the start of the return of his independence

Love to all

Colin

Istanbul at last!

2007-06-15T23:34:00.001Z

We've arrived at Istanbul!

The journey was interesting to say the least, a nember of cars have already been left in Bulgaria becuase of difficulties wiht disposing of them in Turkey and the number of ingenious plans has been awesome!

we have now come up with plan 423B/2a and will put it into action tomorrow!

Adam has been brilliant, he's struggled being in the bus wiht the old farts at times but generally he's enjoyed it i think

sorry i havent posted recently but the laptop mains supply has disappeared so I havent been able to do anyting until i got to this hotel!

love to all

greetings from Budapest

2007-06-12T05:46:00.000Z

June 12

It’s 6.30 UK time and I’ve just woken Adam from his pit after a 1.30 a.m. finish last night, he seems to have remembered that his liver is evil and must be punished so he has been imbibing on the local beers each night.

The rally has so far been great fun, an 11 hour drive the first day to get us into Prague, it shouldn’t have taken that long but with 22 vehicles, all quite old and costing very little there are numerous stops along the way, we lost one Vehicle somewhere in Germany when the Rave Rockets Scorpio decided to lose weight by shedding most of its engine, still the guys jumped into someone else’s car, gave some Euros toe the tow truck and they will never see the car again.

The entry into Bratislava was with a full police escort, stopping traffic and shutting roads to let us through, now we know how Royalty feel! The exit from Bratislava was with the escort again and this time Adam rode shotgun with the police in the mid car.

We are now in Budapest and just about to go to find some breakfast, on a couple of the night we have had to book into a hotel as the hostel’s don’t have great facilities for wheelchair access and there are only so many stairs I feel like lifting the chair and Adam up! So the accommodation has been ok so far.

Will try to post more information soon but it is quite difficult, the main dumball website has a link to the live update site and can be found at www.dumballrally.org.uk

Love to all

Colin

dumball ready to go

2007-06-08T17:05:00.000Z

Have just arrived at the Ibis in Brussels having had a late start and lunch in Brugge, the van got to just over 100 miles per hour even loaded wiht 3 lardy blokes and Adam!

we have met with the film crew and are planning to go out with them tonight for dinner to learn how to sppeak american, (they aren't allowed to admit to being American so we are saying they are Canadian.

Am using a webmail service whilst away so cant spell check properly, apolorgeees for the bad spooling!

will try to update regularly.

love to all

colin

DUMBALL - good to go!!!!

2007-06-06T18:43:00.000Z

Adam went to the hospital yesterday for a follow up blood test and Pauline rang me to say that his platelets had dropped a lot and that the prof wanted to increase his Dasatinib and start steroids as a precaution in case the leukaemia was coming back, he also requested that we go back today to get the results of the blood film test that looks for blast cells in the blood.

Not much sleep last night as you can imagine!

To cut a very long story short, the blood film was ok and the steroids have been stopped again (use of the steroids stops the healing to his heel) and we are good to go for the Dumball on Friday.

If anyone has spare money they don’t need then you can donate to the Dumball at either www.justgiving.com/colinhorndumball or www.justgiving.com/dumball if you use the latter then please mention Adams apples when pledging.

I will try to do some updates during the rally but hopefully we’ll be too drunk, too busy, too tired etc…..

Love to all

Colin

dumball beckons

2007-06-02T22:35:00.000Z

Sat 2nd June

It’s now less than a week before we set off for the Dumball rally and Mac and Alan come over to apply the new finish to the car, Adam had bought a number of bits and bobs for the car so we spent the afternoon changing it from bog standard Fiat red to something slightly more noticeable!

Adam has been training to walk with just crutches for emergency reason just in case when we are away we need to leave somewhere in a hurry in case of fire etc. he called me whilst we were doing the car and I turned round to see him standing at the front door in his crutches, how cool is that!.

We have a meeting on Tuesday with the prof and on Wednesday with the E N T crew so barring any nasties we are good to go on Friday… watch this space.

Thanks to all who have donated, directly or indirectly to the rally effort,

Love to all

Colin

Tuesday 29th May

2007-05-29T18:54:00.000Z

Adam went to the hospital this morning to meet the doctor who is to cast the socket for his artificial leg, the guy was interested to know about the Dumball rally and he was interested to help with some of the logistics, Adam walked the parallel bars twice on Friday with a temporary artificial leg, we plan to get Adam to try walking with crutches for a short distance so that, in an emergency such as a fire in a hostel in Bulgaria, he will be able to move independently. He isn’t supposed to put weight or strain on the right heel but in an emergency I guess anything goes!

Plans for the rally are well underway and we begin to realise that there are a lot of logistics still to resolve, not least getting the car registered urgently so we can legally dispose of it!

And then there’s the more important issues like, what colour super soakers do we buy to ensure that we can do proper water fights on the way!!!!

Watch this space

Love to all

Colin

update Wednesday 23may07

2007-05-23T22:19:00.000Z

I should have done this update yesterday.

We had Adams latest consult with the prof yesterday; this was also the time we would get the results of the last chromosome test on his marrow.

I had asked the registrar to tell me the results of the test over the phone at the end of last week, she asked if I was sure I’d want them over the phone because obviously they can be bad as well as good, I said I was ok with it as it would determine whether I went with Adam and Pauline, she emailed me back to say that the results were in but were being posted straight to the prof and she couldn’t get then over the phone.

Which was an excellent lesson in don’t ask a question if you cant face the answer, I naturally assumed she wasn’t telling me because it was bad news and spent the weekend fretting, finally my fretting got the better of me and I emailed the prof to ask the same question, he replied to say that the result couldn’t be given in 10 seconds or by email but that they were very good, not zero but very close and he would then be out of contact till clinic!

So I went to clinic!

The results were good, and Adams bloods are near normal so the plan is to continue at the moment, Pauline queried the dosage on the silver bullet drug, Dasatinib as this had been lowered a while ago owing to a reduced platelet count and it was agreed that his dosage be upped.

The prof also decided to stop a couple of the other drugs he’s been on so he was pleased to be released from taking them.

The next consult is early in June just before the Dumball, and will be mainly to monitor the effects of increasing the Dasatinib on his blood counts.

So, for now, he’s enjoying cruising around in his car….

Enjoy the bank holiday

Colin

have car will travel... anyone seen my boy?

2007-05-17T19:00:00.000Z

With a bit of skulduggery and some advance planning, I managed to get Adam to the car dealership without him knowing that his new car was there waiting and ready for him to drive away..

We went in under the pretext of him needing to sign some forms and he was confused when the guy gave him a tax disc and some keys and said, there you go!

SO, he took me for a drive then we came home to meet the documentary makers that are to film the Dumball rally and he's now buggered off somewhere with Lauren for a drive.

Obviously getting in and out is difficult and he needs a hand with it but once in the car,he has his independence back!

Today .... The boy is a happy bunny

If anyone knows of a company who wants to sponsor a panel on the Dumball car by having their logo on it then please let them know to contact me. If anyone wants to sponsor our effort to get to Istanbul in a 'reasonably priced' car then navigate to www.justgiving.com/dumball PLEASE be sure to mention me or the Adam's Apple's team so we get the credit!

Love to all

Colin

Adam home agrees with him

2007-05-08T21:36:00.000Z

Adam had a good weekend, he is in a much better place mentally now and it is like having the old Adam back.

He is in pain with his heel, lungs, back, wrists, fingers, and bones generally and is fed up with things hurting but he is much more positive than of late and this changes the mood all round at the moment.

We are not due back to UCH until the 22^nd May when we’ll hear the results of the latest chromosome test, my instinct tells me it’ll be clear and I hope to goodness that my instinct is right!

So for now there is an air of normality that has befallen us, it’s a welcome one that’s for sure.

Love to all

Colin

MR HORN HAS LEFT THE BUILDING

2007-05-01T08:55:00.000Z

Took Adam back into the hospital Sunday evening and spent the day with him yesterday chilling and chatting, he went to the gym and did a tiny amount of physio which he enjoyed, then eventually the docs did their rounds and asked how he got on at the weekend, ‘fine’ he answered, ‘ok’ they said ‘lets think about making you being at home a more permanent thing’ ‘yes please’ he said, ‘how soon’ they said, ‘how about now’ he said, ‘ok’ they said.... 'best get packing' I said!

So we packed everything up, met the transport guy and brought Adam home late last night.

It felt a bit like running away from school or playing hookey as it wasn’t planned, but like all those days in your childhood when you are playing hookey, all the more precious as a result!

The weekend really did the trick and he has a much more positive head on him at the moment so we hope to build on that as much as possible.

Love to all.

Colin

Saturday sunshine

2007-04-28T20:24:00.000Z

Adam has been quite low this past week or so and so we sneaked him out of the hospital yesterday afternoon to bring him home for the weekend, today he had some mates over for a barbecue and had a really good time…. A reminder of what life should be about that’s for sure.

Love to all

Colin

Tuesday 24th April

2007-04-24T11:47:00.000Z

Adam has been quite flat for the last few days, he says he feels like he has flu and aches all over, the docs felt that his severe joint pain may have been down to interactions between the Dasatinib and one of the antibiotics so they have stopped the antibiotic for now and have replaced it with another that has fewer inter reactions.

He is sleeping much of the day and it gets harder to wake and motivate him, we fear that after such long stints in hospital, it becomes a way of life and your horizons become narrower and narrower the longer it goes on, its also impossible to get fresh air into the room so the notion of flinging open the window and being filled with the reality of a new day each morning is impossible to achieve and the artificial environment becomes home, this I am sure does little to bolster his spirit and at a time when he has had to endure so much for so long it’s no surprise that he gets very low about it all.

It’s hard to find things to motivate him as the amount of time he’s awake is brief and usually the first thought is to try to get some nourishment into him but we do try and with luck his body will bounce back, yet again, followed by his head and we can start to build him up again.

The impossibly slow progress of his heel is a huge limiting factor in his general recovery as it means he still cant even begin to think about weight bearing, the dumball rally is in just 8 weeks and the likelihood of him being fit to do it seems very low at this moment in time, but we have always worked on the principle that it’s best to take one day at a time, plan to do rather than not do and then see what happens. So… Lets see what happens!

Love to all

Colin

2007-04-23T13:33:00.001Z

" Life has a tendency to push you down against the ground. You decide whether you will lie on your back, rest on your knees, or crouch and wait for the moment to leap up and reach heights higher than when you stood on your feet."

Friday 20th April - more pain please docs

2007-04-20T10:34:00.000Z

Adam continues to improve slowly from the chest infection, the docs appear to have confirmed that it was not bacterial and therefore most likely fungal, we told them this at the outset as he has had problems with fungal infections in his chest before but I guess they have to treat for every possible eventuality.

He is quite weak now and he’s been fairly immobile for a couple of weeks which of course doesn’t help his recovery, he is also experiencing severe joint pain at the moment which means he can hardly move, the docs feel it may be a result of some of the antibiotics or possibly the Dasatinib, the new anti leukaemia drug.

Whatever it is, we need to get on top of it soon as he is struggling with the pain again.

Most of the antibiotics have been changed for oral rather than intravenous which means that, when he is strong enough he will be able to come home, at present though he isn’t thinking beyond day to day and he feels too weak to be able to manage at home for now.

The dressing on his heel has been changed to one that is intended to re-encourage the granulation of the tissue around his exposed bone, the new tissue that grew a while ago has now formed skin but it hasn’t covered the bone so he has a really neat looking area of new skin around a rather nasty looking bone sticking out. Not the ideal for a kid who wants to drive his new car when it arrives (hopefully in mid May now)

He is still breathing with the aid of oxygen but his ‘sats’ (see how we get all the lingo, years of watching Casualty weren’t wasted after all!) are getting better when he is on room air so his lungs appear to be improving, just a few other issues now to get moving on before he can be strong enough to get home.

Love to all

Colin

PS. A huge and belated thankyou to Karen Miller, the garden looks brilliant after your efforts!

Morphine rules KO!

2007-04-13T12:56:00.000Z

Adam started this morning in a lot of pain from his chest, the pain control team came to see him and after an Xray they determined that, whilst his lungs are slowly clearing, he has some significant pain from the lining of he lungs where they are inflamed, the lining of the plural cavity should be like two sheets of silk rubbing against each other and in Adam’s case they are like two sheets of sandpaper!

He is anxious about the pain and this increases his breathing rate which in turn means he gets less oxygen which increases his breathing rate which makes him get less oxygen which increase his anxiety…. You getting the picture?

Some heavy duty narcotics and a long chat about his improvement and he is a lot calmer now, sitting up and talking, the amount of oxygen he needs is a little less than yesterday so he is genuinely improving, he just doesn’t feel his is at the moment.

It’s hopefully now just a waiting game to allow the infection to clear and to get him active again, he is very skinny now as everything conspires to stop him eating but as his head is a lot clearer, I hope he’ll start to eat more soon, he does get hungry but takes very small meals or just nibbles, it’s all better than nothing but his body is working hard so he needs nutrients big time.

I’m swapping over with Pauline later so that I can go to Paris for some self inflicted pain on my legs by way of a warm up for the London Marathon next week. My training guru has a lot to answer for!!!!!!

Whilst you’re all enjoying your eggs and bacon on Sunday morning, spare a thought for four nutters from the UK who will be leggin it down the Champs Elysses with not a coffee or croissant in sight!

Au Revior pour maintenent

Amour pour tout

Colin

Ruby Tuesday

2007-04-10T21:46:00.000Z

Adam’s head appears to be clearing a bit, we had a long, long talk on Monday and it’s clear that he has a number of difficult thoughts in his head all the time, (surprise, surprise!) but today he was much more like the Adam that we know, he says he felt around 80%, given that he’s been around 5% for ages then that’s an enormous improvement!

His lungs are improving too, he is able to go longer without the oxygen and although he still cant exert himself it is clear that he seems to have turned the corner on this particular episode for now.

There is a consult planned tomorrow with the vascular team to see what more proactive things can be done about his heel as this is preventing him from weight bearing and thus walking.

For now, at least, some good news is extremely welcome!

Love to all

Colin

“Within each of us is a hidden store of determination. Determination to keep us in the race when all seems lost.”
Roger Dawson

Easter Greetings from UCH!

2007-04-09T10:40:00.000Z

Well, this Easter wasn’t quite what we’d planned…

Adam and I recently went to a good mates and he was at the time still very withdrawn and docile, he managed however to play a video game on an Xbox and play it brilliantly, which made me realise that his brain is probably all still there doing the normal stuff but just in a lights off nobody’s home state at the moment.

So on Saturday morning I decided to go get him an Xbox to see if he would at least have something to occupy him during the rare times he is up and awake, got back with it and he was still in bed and complaining that his breathing was getting worse, he recently had the bad cold that everyone has had and he obviously takes longer to get rid of the cold than most.

To cut a long story short, within a couple of hours we found ourselves in the back of an ambulance on a blue light heading for Mayday hospital, a few hours in the right itu dept and he was identified as having pneumonia and two thirds of each lung was wet with some nasty infection.

His BP was very low and they all got very jittery about this at Mayday, I’m sitting there calmly saying, ‘yeah, don’t worry he’s always low on blood pressure’ and they are all thinking he’s in need of intervention. Anyway we ended up going by ambulance from Mayday to UCH late in the evening where we remain.

He has been given some industrial strength I/V antibiotics and has been on oxygen for all the time, his breathing has improved and we hope that today will show him turning the corner.

His red blood count has dropped a lot over the past couple of days so he had some of UCH’s finest vintage claret overnight and he now has some colour in his cheeks again.

Interestingly, he has been more alert and awake than of late and, when he is awake, he says his head feels clearer and less ‘noisy’. I’m guessing this is because he’s had something else to occupy his mind with but if not then hey, we’ll take all the good stuff we can whenever it’s here!

Depending on how he improves, I shall make my decision on whether to do the Paris marathon or not later in the week but for now we are just waiting to see what the next couple of days bring by way of hopefully improvement. The way my legs and calves feel at the moment I can hardly imagine being able to run 26 miles, let alone do it twice in a week! If anyone is good at massage or has some performance enhancing drugs, they’ll be very welcome here!

Love to all for what’s left of Easter, Thoughts are with Les, Ian, Sheila and Family at the moment.

Colin

update or a bus?

2007-04-03T19:18:00.000Z

These updates, you don’t see one for ages then two come along together!

We had a clinic visit with the Prof this afternoon and during the visit he lightly dropped out that the results of the last bone marrow test showed Adam to be back in remission!

They are awaiting the results of another test to finally confirm things but that’s the best news we’ve had for a long time.

It felt a bit odd, we’ve had bad news every time for so long that good news is received in the most peculiar way, almost with disbelief and a need for qualification.

Anyhow, for now, I’m gonna believe the prof and go with the flow and perhaps go to bed with a smile on my face for a change.

:-)

Love to all

Colin

April 1st - no fooling

2007-04-01T18:33:00.000Z

It’s been a while since I did an update so I thought it about time I put pen to paper so to speak..

Adam has been at home for a while now; he is struggling mentally with the apparently continual onslaught of news and events that don’t go his way.

He is very flat at the moment and spends most of his time in bed, he rarely sleeps at night as he drifts into and out of sleep during the day, we recently got some sleeping tablets for him and hope that these may allow him to get some pattern back to his sleeping.

His new car is now expected sometime during April for the time begin it’s kinda academic as he would have difficulty driving at the moment as his heel has yet to heal, the steroids that we prescribed in addition to the chemo have an affect on his ability to generate new tissue and as a result his heel has effectively gone backwards for a month..

He don’t get it easy this kid.

Love to all

Colin

UCH holiday camp beckons

2007-03-13T19:59:00.000Z

Tuesday 13 March

We visited with the Prof again today, Adams blood counts have taken a nose dive which is a sign that the chemo is working, the effect is that he has become Neutropaenic and at infection risk again.

He has been experiencing some serious anxiety issues as a result of coming off some of the painkillers that he's been on for a long time and also because... yep, you've guessed it! He has a lot to be anxious about!

He asked if he could be brought into hospital for a short break while he tries to sort his head out, the prof felt this was a good idea as he is likely to need platelets anyday as his counts continue to fall.

So we are back in UCH on T13 room 2 where the nurses are making an appropriate fuss over him, he can get some professional help here and with luck it'll be a boost for him.

love to all

Colin

Adam update - it's the way you tell em

2007-03-07T22:10:00.000Z

On Monday Adam went to the gym at our local hospital and he spent some time there being fussed over by the girlies who did some interesting things with his leg/s and who after some request by him, fitted a temporary artificial leg to his left leg and he stood up aided by a stool to support his right leg, it was amazing to stand eye to eye with him, I’d forgotten how tall he is!

He was really buoyed up by being able to stand; it’s been a huge issue for him so it was a real boost.

On Tuesday we had our meeting with the professor at UCH to see whether the news we had been given the previous week had any other alternatives, I was terrified of going in as was Pauline, I went to work beforehand and when I got home to get them I expected him to be like the kid who has to go and see the headmaster! He was dressed, ready for action and told me he felt great and full of energy.

Whether this was a direct result of realising that he could actually stand again with some help or whether he just kicked himself out of the depression for a while I don’t know but nonetheless he had a good head on him as we went into the hospital.

The professor didn’t give us any different news, however he delivered the news in a way that seemed to reassure us all much better than previously and Adam liked him, this is a vital thing for Adam, he does best with people he likes and who he feels show a genuine interest in his case.

So for now, the plan is to try to improve his bone marrow by continuing the new drug, there is a possibility that the steroids may be replaced with another drug called Rituximab which is normally used for other types of cancer but may give some improvement for him, the Prof explained that as the existing treatment isn’t working, we need to find something that is different as the leukaemia is clever and learns how to overcome many things that are thrown at it.

We watch and wait again…

Love to all

Colin

One step forward ------- a few back

2007-02-23T19:20:00.000Z

We had what we thought would be a routine blood test on Monday of this week whilst we went in for a bone marrow aspirate…

Actually when I say we, I obviously mean Adam, (why do I do that?)

His blood results showed a slight increase in his white cells, a continuing drop in his platelets and a normal red cell count.

The consultant rang on Tuesday to advise that they had found leukaemic cells in his bone marrow and that we needed to go in on Wednesday to discuss the options.

We duly went in and discussed the options, there were 3 and two of them were unpalatable so, on the basis that the Glivec is clearly not doing it’s intended job of holding his leukaemia at bay, we went with option 2 which is to use a brand new (just licensed last week) sister drug of Glivec that is used where the Philadelphia Chromosome become resistant to Glivec. The new drug is called Dasatinib.

So, the boy is now one of only 3 people at UCH who are on this new drug, the docs are throwing in a month of chemotherapy and some steroids for good measure and, if we keep going back for more we get a set of free glasses or a digital watch!

It’s a moveable feast this Leukaemia type thing!

Love to all.

Colin

blogger blags some wonga

2007-02-09T22:47:00.000Z

For reasons best known to anyone but me, I have been talked into running both the Paris and London Marathons in April. They are just a week apart (given I took 10 days to recover from the Dublin marathon, it could be interesting!) I couldn't get aTCT place in the London so had to take a place for the Seafarers UK charity, check out the link at www.justgiving.com/colin-horn and if you have any money left this time of year, do make a donation, it'll be helping a worthy cause!

Thursday 8 February 2007

2007-02-08T21:50:00.000Z

Adam had his first visit to Roehampton on Monday this week, he had a rough weekend and was feeling quite poorly, we forget that he does get ill in a normal way and not everything wrong with him is related to the illness, sometimes he can just get to be plain old ill I guess.

We eventually got to Roehampton a good few hours later than we had been booked in and met with the doctor there, Adam wasn’t impressed with him and it’s amazing how important to Adam it is that he gets on with the docs, anyway had what amounted to an introductory visit, they cant do much at the moment about a prosthetic or about his walking training as he cant weight bear on the right leg owing to the heel not being healed yet.

He is quite weak and has lost weight so the plan is that he be referred to the physio department at our local hospital and they will visit at home and or have him in the gym for exercise and training for his leg muscles in advance of his prosthetic fitting.

His weight is very low, he doesn’t like too many personal details being given out but suffice to say that he’d be boxing featherweight and most of the girlies reading this would be jealous of his weight!

We got back from Roehampton and he had a major down; he had been quite depressed over the weekend and he said that he was fed up with his life and with being ill and not being NORMAL

I told him that he should shape up and get real, there were many people with much bigger problems than him! Take that Jade Goody for instance, she’s gone bonkers and that poor old Shilpa Shetty, she has to put up with being treated like a deity!

Well actually we sat together for a long time and talked and cried, then Pauline took over and talked and cried with him too. Eventually he rallied and began to bounce back.

Later in the evening he said ‘dad, I’m sorry for upsetting you’ which upset me all over again of course… Having a kid with Adams issues does make a modern man of you, I can cry for England now on a whim, takes hardly anything to set it off! Good god, I’ll be knitting and doing the washing up soon!

He is much brighter now, he’s eaten a bit more over the past few days and looks better, he’s just been bashing me as I wanted to nick something of his.

We are back in UCH on Monday to meet with the Vascular team and his Haematology team as well, his leukaemia has been sidelined by the feet of late but we do have a constant awareness that he may be winning this battle but that in fact, winning this battle simple allows him the opportunity to fight a bigger war soon.

On a technical note, without the Glivec, his silver bullet drug, he would not have any legs by now, it is this drug that, (we hope) continues to hold his leukaemia at bay and buys him the time to let his heel repair itself, without the drug he would have had to have had a transplant by now and in order to have that then both legs would have been taken off. (Note to the guys who unlocked the human DNA sequence – Cheers Chaps, we owe you one!)

Love to all.

Colin

Adam Won - Staples 22!

2007-02-02T08:18:00.000Z

Friday 2nd Feb

Adam had the 22 metal staples removed from the ‘little leg’ yesterday, he described it as, not unbearable pain but more like someone tearing out a clump of hair for each one. He was very anxious beforehand and I think the reality was probably better than he expected but bad enough anyway!

We are hopeful that the long awaited Vac Pump will arrive today and can be connected to accelerate the healing to his right heel.

He has a number of visitors due today and we are due on Monday to go to Roehampton limb fitting centre for our first visit to the guys with the metal legs, not sure what the plan is yet but will update as soon as we know.

Love to all

Staples anyone?

2007-01-31T23:11:00.000Z

Adams had belly ache and some sickness for the past day or so, it may be just a bug or perhaps the toxicity of his drugs building up, either way it means that he often throws up his drugs so doesn’t get the benefit of them.

We are going to UCH tomorrow to have the staples out of his stump, he’s very nervous about this. He thought there may be a few staples and I reckon there are 20-30!

He has been a bit down tonight and is simply fed up and wants his life back, cant say I blame him cos I know how he feels, but there is some progress and we hope to get the vac pump at last tomorrow or the day after, once received we can get it connected again and hopefully see the best improvement in his heels healing !

Will update after the hospital visit tomorrow.

Love to all

Colin

Motor cars make all the difference

2007-01-30T07:56:00.000Z

Monday 29 January

Adam had a good weekend, on Saturday we went to order his new car, he had test driven 2 versions of the Ford Focus, one with the 1.6 engine and one with the 2.0 engine. Not surprisingly, as he needs an auto the 2.0litre engine was much better so he plumped for this one.

He arrived at the dealership in his wheelchair and apologised to the salesman for being late as he had 'gotten legless' the previous night!

Afterwards we went into Croydon for some retail therapy, the first time we’ve been ‘out’ proper in public since the amputation and he enjoyed spending some cash, we saw some a few people and friends that we knew and he was fine with the leg thing.

Found out yesterday though that the mobility scheme that provides the car won’t insure someone under 25 in a 2.0 litre car so he has now had to downsize to the 1.6! Ying and Yang this boy or what?

We went to Mac and Lets on a spontaneous visit last night, I want to get him out as much as possible as I fear he stagnates in the house and we had a great time, he said as we got into the car afterwards, ‘thanks dad, I enjoyed being out’

I’ve now got a place in the Dumball rally http://www.dumballrally.org.uk/ which takes place later this year. I now need to find a car capable of taking 4 people safely to Istanbul and that costs less than £400.00. anyone with any bright ideas do please shout.

And, I learned recently that the Paris and London marathons in April are a week apart not two weeks!!!! (Thanks Asghar!!!!) So may need the services of a good leg masseuse in the week between or preferably a look-alike who can run fast!

As i've had to take a paid charity place in the London Marathon with the seafarers I'll no doubt be banging the sponsorship drum again soon! SORRY

Update 25 January 2007

2007-01-25T11:23:00.000Z

Well, the first night at home came and went fairly uneventfully, we have set up a small camp in the dining room so Adam can sleep there until he is able to weight bear on his right leg and can then use his own room again, he hates being so dependant on us and I do keep pointing out to him that it is a temporary situation and things will change but at the moment he sometimes finds it hard to have the up attitude, for the most part though he is happy to be home, he’s getting bored already and I’ve said that I want to make sure he gets out of the house at least once a day to make sure he remembers that there is a world out there.

I thought I might try and find some work that he could easily do from his laptop from home to earn him some pocket money, we have a webcam and the appropriate software so if anyone knows any gorgeous models I guess a new porn site would be easy!

(Other, more appropriate suggestions would also be welcome)

Love to all

Colin

MR HORN IS IN THE BULDING .....

2007-01-23T22:30:00.000Z

Adam had his review this morning with the Vascular team and this afternoon he had the vac pump dressing changed on his right heel and front of foot, the docs are pleased with the improvements made with the vac pump and as he is now off the I/V painkillers, he was allowed home this afternoon!

Strangely the docs said that the vac pump isn’t allowed to leave the hospital so we now have to source one ourselves, Shelly is in contact with someone at St Georges who may be able to help and I have made contact with KCI, the makers to see if we can buy the portable version privately.

It was brilliant to finally get him home, we had Chinese and are now watching shameless, a proper slags nite in!

There are some practical issue we have to resolve with the house and his access to it but for now, we are just enjoying having him home and he is happy to be here.

Love to all

Colin

Monday 22 January 2007

2007-01-22T19:21:00.000Z

A brief update.

Adam is now off the IV morphine, I did a deal with the nurses at the weekend to slowly reduce the dose and this seems to have worked, he didn’t know it but was getting less and less dose. He is now on oral pain killers which mean that he is more likely to be discharged.

The Vascular team didn’t get to see him today so they plan to at 11.00 tomorrow, at which time the will check the progress on the heel of his right foot to see how well the Vac pump is doing.

The guy in the bed next to him has MRSA!

We don’t like it easy! There’s lots of reassurance about how difficult it is to catch etc etc, (if it was that bloody difficult then perhaps the guy in the bed next may not have caught it!) but I’m not reassured, Pauline has been putting pressure on as she’s in today, they offered to move him to another bed on the same ward but that seems to defeat the object as there is no guarantee that the infection wont carry.

Otherwise, Adam is in good mood and looking forward to getting back home.

Love to all

Colin

SUNDAY EVENING

2007-01-21T23:13:00.000Z

Adam had a good day today, the pain is being controlled and, i presume, will begin to reduce naturally as he heals, the plan for tomorrow is to have the dressing on the foot changed and to see how the vac pump is doing, there is also talk of taking him off the IV morphine which would mean that he could perhaps come home anytime soon.

We have to look at how we manage him at home but i know that somehow we will.

IMPORTANT INFORMATION

2007-01-21T15:05:00.000Z

Well, It just goes to show that you should never presume what a 21 year old guy might accept, want or need.

I told Adam about the blog and he didn't want me to do it... He sometimes expresses concern over his private details being punted around the Internet and in the past has moaned that people have called him with a response to an email and he didn't even know what was in the Mail.

So, in deference to my, occasionally stubborn (god knows where he gets it!) child, I shall refrain from posting the emails up on the blog and will change the emphasis to be less about his treatment and perhaps more about how it affects parents and me in particular, not sure that's of interest to anyone but I guess that's the idea of a blog.

AND TONIGHT HE FEELS THAT PERHAPS IT IS A GOOD IDEA AFTER ALL!
GO FIGURE!...

the beginning of the blog

2007-01-21T10:05:00.001Z

This will be the first entry in the blog so we'll see if it's a good addition to the email updates for everyone, Adam doesn't see the email replies but he will be able to see the blog entries.