Thursday 25 December 2008

Christmas Day 2008

"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.


Wednesday 1 October 2008

Adam would have liked this

"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."

Wednesday 17 September 2008

Coincidence - or the boys work?

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


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

12 September 2008 - Lake Windermere


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!

Thursday 11 September 2008

Adam - 21+2 13 September 2008

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.


Thursday 4 September 2008

I'll have a medium please

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


Tuesday 8 July 2008

6 months on

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


Monday 16 June 2008

The boy suggested....

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


Thursday 24 April 2008

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

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

Wednesday 27 February 2008

the 49th Day

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


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

Friday 8 February 2008

a month on... youtube video

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.

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



Post Funeral news

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


Friday 18 January 2008

Funeral or 'After Party' arrangements


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!

Thursday 17 January 2008

Adam update Thursday 17Jan 08

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.


Wednesday 16 January 2008

Adam update - the 'After' party

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


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


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’

Sunday 13 January 2008

adam update sunday 13 january

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


Friday 11 January 2008

Adam update 11 January 2008

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 24th 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

Wednesday 9 January 2008

Adam Update 9 January 2008

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… 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.’


Thursday 3 January 2008

Thursday Jan 3 2008

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……………

Wednesday 2 January 2008

update 2 jan 08

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