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