Service of Thanksgiving ...

A memorial service for Adam will be held at 11am on Tuesday 30th July in the Chapel of St Luke within the grounds of Epsom College, followed by a private cremation for family only at Randall's Park, Leatherhead.

All are welcome to attend the Chapel service. There is no preferred dress-code.

Refreshments will be served in the main school following the Chapel service.

We are requesting no flowers. Anybody wishing to make a donation in memory of Adam, or in lieu of flowers, is asked to do so in favour of paedeatric services (Casey and Ebbisham wards, and the community care team) at Epsom Hospital who looked after Adam with such care and diligence throughout the course of his illness.

A retiring collection will be held after the Chapel service.

Cheques should be made payable to 'Epsom and St Helier University Hospitals NHS Trust' and may be sent c/o W A Truelove & Son, 14/18 Church Road, Epsom, Surrey, KT17 4AB.

An online giving page has also been setup at http://uk.virginmoneygiving.com/adamb.

In view of the ongoing roadworks near the College, those attending the service are advised to approach from Epsom town centre and use the main entrance, or from Epsom Downs and use the Sports Hall entrance on Longdown Lane South.

I can't imagine ...

They are words you see and hear quite a lot after your child dies, in cards of condolence and messages of sympathy. Words that have a certain appropriateness, to convey how unfathomable it all is.

"I can't imagine …".

To those who have used such a phrase, I can confirm what you already knew.

I know this to be true because I myself could never have imagined. I never understood. For as long as I stood on the precipice, knowing each day was a day closer to losing my precious child, I had no idea it would feel like this when Adam was actually gone. I couldn't imagine for one reason alone — he was still with me. You can try to imagine all you like — at times you cannot stop yourself in fact. You can have dark thoughts in your head; they may consume you at night as you drift into sleep, and still be there when you wake in the morning. But these are your fears, they are not your reality. As much as it feels real at the time, it's not. Not when your child is still there, to talk to, to touch, to love, to adore. Not when your child is still there for you to wake up to.

When you know that you have kissed them goodnight for the last time; will never again hear their voice, feel their touch, hold their hand, smell their essence. When all you have left to look at are photographs. When all you have left to talk to is an empty space, or a once treasured something. When there is no more making new memories, only hoping you won't forget old ones. When you think of things you wish you'd done, or said, or taken care of — stupid little things much of the time — and know you're never going to have that chance. When nothing you can do or say can ever change anything. When you no longer have fears only absolutes. When there is nothing left to imagine. When this is reality, from now until your own dying day. Only then do you understand.

The End ...

This morning at five minutes after nine, lying in our bed at home as we held his hand, stroked his hair, and told him we loved him, our beautiful little boy Adam took his last breath and left this world. He will live on forever in our hearts.

I wrote the following a few days ago, but never got round to publishing it …

Letting go …

Monday 8th July

For reasons I do not fully understand an odd sense of calm has descended upon me these past few days. I think perhaps I have finally come to realise, understand, and begin to accept.

There is a time to fight, and we did that, for as long and as hard as we could; perhaps too long though I don't believe so.

There is a time to hold on, to focus on taking out of each day whatever you can within the limits of what circumstances will allow. We've been there a couple of times. After Adam completed immunotherapy, before a single suspicious lymph node was revealed to be the pre-cursor to full-blown progression. And just recently whilst Adam has been comfortable at home, and we've been able to enjoy simply being in his company each day, overlaid with occasional special moments like our trip to Harry Potter Studios, and the school Tombola.

And then there is a time to let go … and now is that time.

It may seem a bizarre thing to say, but I actually feel fortunate right now. In the context of what we are facing to have had the time that we have, over two months of it, with Adam free of pain, lucid and coherent, has been more than we could have dared hope for. That's not to say it's any easier, or less traumatic, or our hearts are any less broken, or there isn't a constant undercurrent of tears in my eyes ready to burst forth at any given moment. But we have been afforded something that many are not, and as a consequence I've gained a perspective that I otherwise wouldn't have.

We have decided the time is right to stop taking Adam to hospital to receive blood transfusions. It's better that he stays at home where he is comfortable, and we continue to care for him as best we are able. Whilst I have no idea precisely what the coming days will hold, my one fervent wish is for Adam to remain comfortable and without pain.

From the very start of this journey, Alison and I have always done what we believed was the right thing for Adam, for the right reasons. So I can't now allow myself to be the cause of unnecessary suffering through my own selfish (though perfectly natural) desire for Adam to remain with us for as long as possible. Letting go, not giving up. Letting go … the easiest thing of all … and the hardest thing of all.

Return of the Tombola ...

Well, I don't entirely know what to say other than an enormous thank you from the bottom of my heart to all you lovely people who ensured that, as a (very welcome) new addition for 2013, there would be a jar tombola at the junior school's celebration evening.

When I woke Adam up just after 4pm and asked him whether he wanted to go (having changed his mind several times during the course of the day), he said he was too tired and didn't think he would. But it was a rather equivocal no, and so me being me, I gave him a gentle nudge … and he changed his mind again! We agreed a plan; drive up, get there early, spend a couple of quid, make sure he won something, and be home again in half-an-hour …

… or not. We parked his chair in the middle of the stall, and there he remained for the next hour. Studiously examining the jars until he found one (or several) that he liked, then draining the contents of my wallet until he'd picked out enough winning tickets to add them to his collection.

I don't know how many sweets he'll actually eat, though I'd wager not that many. I don't even know how many jars he'll open. We could end up spending longer tomorrow sorting sweets than we did today winning them. Equally they could remain untouched in the bag that we brought them home in.

It doesn't matter.

For two hours today Adam was joining in (well actually he was hogging most of the stall), and having fun. In all likelihood he would have refused to go had he known it was instigated for his benefit.

So thank you friends, know that you did a lovely thing. It's too hard for me to describe what it was like to see Adam go along today and really enjoy himself. I can't lie to you and say my heart was full of joy, how can it ever be? But that's alright, it wasn't about me. I can say that today I have experienced something other than sadness and anger. I was happy for Adam, and I was happy for you all too.

And now I must go and wipe my eyes — I seem to have a touch of hayfever all of a sudden.

It's only a tombola …

It was the Junior School Summer Fair last weekend, the school attended by Jessica and at which Adam remains, notionally at least, a member of Year 4. I had no desire to attend, of course. I seldom have much desire to do anything these days. Content to watch Jake play football or cricket, because (a) the primary activity is watching, and (b) any secondary activity such as talking tends to revolve around what’s being watched. Beyond these simple pursuits I am, at present, not much of a willing participant in social interaction, save for perfunctory acknowledgments.

On Friday Jessica asked if she'd still be able to go even if Alison and I didn't, and of course we said yes. We had a conversation on the landing about whether we could drop her off at school at 12:30 to meet a friend. Meanwhile, along the corridor  in our bedroom where Adam has taken up residence, little ears were flapping; attention briefly stolen away from the iPad he spends most of his waking hours watching.

"What were you and Jessica just talking about?" he asked as I entered the room. I duly explained.

"I want to go to my school fair too."

"You can go if you want to Adam, that's no problem."

"Well I do want to go, but you know, only if I'm well enough to go, and I know I'm not going to feel up to it, so I won't go. It's okay, Dad, I won't go."

"It's entirely up to you Adam. It's not until Sunday so you don't need to decide now."

"But I know I won't be up for going. Ok, Dad? Ok?"

"Ok Adam."

There is a familiarity in this. Things that Adam wants to do, things that Adam thinks about doing, things that Adam's body simply won't allow him to do. One minute he's going to do something, a few minutes later he cannot muster sufficient energy or enthusiasm to actually do it. The moment has passed and we move on. We have come to accept it for what it is, and will give silent thanks for as long as he retains the capacity to even think in such terms.

At his last full blood count (after which we stopped bothering to even do them any more) Adam's haemoglobin (the main component of red blood cells, responsible for carrying oxygen away from the lungs to the rest of the body) was 2.8. Normal level would be above 12, and for a child on active treatment below 7 represents the lower threshold for transfusing blood. Our expectations regarding what he might be both willing and able to do nowadays are limited, to say the least.

On Saturday Adam woke late. His hours are varied these days. He may sleep until midday or beyond, and might then remain wide awake into the hours approaching midnight. We don't try and enforce any particular structure upon him, but instead allow ourselves to be guided by how he feels and behaves on any particular day. Except for the need to stir him in the early hours for essential medications on days where he has woken exceptionally late, it doesn't present any great burden. He mostly drinks alright considering, and eats little amounts as and when he feels like it; his appearance has become painfully gaunt and pallid. Most importantly though, he remains without pain, and in no distress.

After having a little breakfast he announced that it was time for him to have a bath.

"I need to be clean and fresh for my school fair tomorrow," he said.

I looked at him through sceptical eyes. He'd been in the bath once since we last returned from America, and lasted about fifteen minutes before he was asking to get out again. But he seemed pretty determined, so away I went. For bathing we cushion the bottom of the tub with the biggest towel we’ve got, and use further towels to provide head and neck support. I filled the tub with water, and then as carefully and as gently as I could, lifted Adam up and into position.

And there he lay. Relaxed and content, enjoying the warm soapy water. When the water was no longer warm, but Adam wasn’t yet ready to come out, I refilled the tub with him still in it. After 40 or 50 minutes I lifted his fragile little frame out of the water and onto a chair, wrapped him towels until he was completely covered up, and left him to dry in the warmth of the bathroom.

“Dad, look at my hands, they’re like prawns,” he said, opening his palms towards me.

“I think you mean prunes, son. And yes, they do.”

Clean pyjamas, clean bed sheet, I returned him to our bedroom where he settled back down to his iPad. Normal service resumed.

On Sunday our plans for the day comprised dropping Jessica off at school at 12.30, driving Jake to friends at 1.15 so he could get a lift to his football tournament, and me possibly driving over later to watch him play. The only ‘plans’ we ever have regarding Adam revolve around transfusions on Mondays and Thursdays.

He woke sometime after midday. “Dad, where is Jessica?” he asked.

“She’s gone to the school fair.”

“What time did it start?”

“It started at 12.30, Adam.”

“Dad, I need to get there as soon as possible.”

This was even more unexpected than his request for a bath the previous day. We were not at all prepared. He’d had nothing to drink, no food, no medications, he wasn’t dressed; Jake still needing dropping off.

"I want to get there for the sweetie tombola," he said, struggling with my help to sit himself up into a position from which I could get him dressed. The last time he wore clothes other than pyjamas? I can't remember. Days tend to blend into each other, to be honest, and I don't remember very much of anything.

By the time we were ready to leave the clock had ticked round to 1.30. In the car as we approached school I told Adam not to get upset if there were was nothing left on the on the tombola stalls as they were always the most popular. "I'm sorry Dad, but I will get upset," he said, "That's the only reason I wanted to come." I got Adam out of the car, transferred him into his pushchair, covered him with a blanket, and off we went.

As we entered the playground and saw the two empty tables it was apparent this was not going to be the happy outing for Adam that I so desperately wanted it to be. The only thing he really wanted to do and it wasn't going to happen. Sure we wandered around, he spent a little money elsewhere, but he didn't enjoy it very much. At one point he even pulled the blanket up over his head and had a little cry because he'd missed out. At that point I just felt utterly useless, and completely full of hate about everything.

For those people who came and said hello during the brief time we were there, I say two things. Firstly, thank you. I don't like conversation, but neither is it nice to be avoided (not that anybody obviously did that). Kind of makes things awkward, doesn't it? I know how we must have looked, and making a point of coming and speaking to us wasn't the easy option. Secondly, my ignorance and general demeanour wasn't a result of us being there, it wasn't a consequence of seeing Adam's schoolmates running around having fun whilst he no longer retains the ability to walk, it wasn't heartbreak over the situation we find ourselves in. No, it was none of these things. Instead, it was all down to the bloody tombola having finished before we got there.

For his part Adam didn't dwell on things. We didn't stay long before he wanted to return home, and he hasn't mentioned it more than once or twice since. For my own part I was in an awful mood for the rest of the day, and most of the next. Something that Adam had wanted to do, something that Adam had attempted to do, something that Adam had failed to do — but not because of a lack of anything on his part, but simply through circumstances. That was all I was consumed with, and I was so full of anger and hatred about it.

But I've gotten over it now. It's not so much that I've let the anger go, more that I've put it back in the box along with everything else.

Because after all, it's only a tombola … right?

Another update ...

It occurred to me this morning that it's been quite a while since I updated. And whilst I did say I'd only update when I have something to say, and even though I have very little 'new' information to impart, I'm updating anyway because I feel like it.

Most of the previous post was written on our immediate return to England, with some subsequent updates to take care of developments in the intervening period before I pushed it out as a public post. The time in-between was spent informing those whom I didn't want learning the devastating news by reading about it on here. I also had to choose my moment to talk to Jake and Jess. Being completely frank, when I wrote that post I was utterly convinced that the next would be the last.

Whilst Adam has a growing list of issues, and it's clear to see that his disease continues on it's relentless path, the progression has been slower, and the deterioration less dramatic, than we had feared it would be. He is comfortable and has been, for the most part, without pain. For this we are ever thankful. The chest drain was removed, and we've since had no further issues with fluid accumulation in his lungs. Again this was not something that was envisaged when we transitioned to palliative care, either by ourselves or any or Adam's doctors.

Although Adam is really not up to doing a great deal now he did manage a few days out some weeks ago, including a very special trip to the Harry Potter Studio Tour arranged for us by Rays of Sunshine Children's Charity. We all went along as a family, and had a lovely time. And as an extra special treat we got to hang out with Mr Draco Malfoy himself!

When we flew back from the US we did so with a 28-day supply of the drug combination that Adam had been on, minus the dasatinib that we thought might be contributing to his pleural effusions. Which left a decision to be made when the supply was exhausted. In the end we came to the conclusion that whilst Adam was comfortable, and not in pain, we wanted to continue things just as they were. Whilst withdrawing one or more of the drugs may have made no difference whatsoever, if we did so and Adam's condition changed dramatically we'd always be left wondering whether it was precipitated by our actions. Any actual cause-and-effect could never be known of course, but that wasn't a position I wanted to find myself in.

Having left it late to come to such a conclusion the only option was for me to make the 8,000 mile round-trip to Michigan to collect another 28-day supply, leaving home at 8am on Saturday and returning at 9.30am on Monday. And even then, it was only down to the tremendous support from the staff at Helen DeVos, and Julie and Craig in particular, that enabled it all to work out on a weekend when the pharmacy wasn't even open.

Because of our prevaricating about whether or not to continue, Adam was off two of his drugs for a week, and last Monday and Tuesday experienced worsening, debilitating, pain. We increased his pain-relief patch, but that only brought other problems. A week later, and back on all three drugs, he is now comfortable once more. His pain receded and we backed off his pain relief to the level it was before, and where it has been ever since we returned from the U.S.

And so that's where we're at, continuing to live day-by-day. Adam has a platelet transfusion on Mondays, blood and platelet transfusions on Thursdays, and we manage symptoms as best we are able in the meantime. We have a fantastic community team supporting us, and the out-reach team from the Marsden are available at all times, day and night. So far we have not spent any time under hospice care, preferring instead to look after Adam at home. Which is what we will continue to do for as long as it remains possible ... please continue to keep him in your thoughts and in your prayers.

An update ...

After four years, though it seems like longer still, the final stage of our journey has begun. We have left America for the last time, our principle task now to make Adam as comfortable, and free from pain, as possible.

We haven't told Adam what the future holds, and neither do we intend to; for what purpose would it serve except to add mental stress and anguish on top of the physical pain? Jake and Jessica do know -- a conversation like no other I have ever had, or ever want to have again -- but it was necessary to be honest with them. For their sakes, please be sensitive with any comments.

Adam remains the same as ever. He reminisces about what he used to do when he wasn't like he is now. He talks about what he's going to do when he's better. He informs me that we can buy some more sticky velcro so his replica WWE championship belts still fit him when he's bigger. He asks me if he can have a pocket tool with scissors, and bottle opener, and screwdriver, when he's older? He wonders if the cricket bat we bought him last summer will still be big enough for him this year? Out of the mouth of a child, an embodiment of innocence even now despite everything he's been forced to endure. And they cut through my heart like a knife.

Just over a fortnight ago, on Tuesday morning, Adam went into theatre just after 9am to have a tube inserted into his chest, and 1.5 litres of fluid removed from his right lung. By 4:30pm he was in the car, connected to a 4ft hose into a chest drain collection kit, and hooked up to a portable oxygen compressor, on his way to Detroit airport for the flight home. Not the standard discharge process after such a procedure, but there was genuine concern that if we didn't get Adam home as soon as possible, he might not be able to fly. He was retaining large amounts of fluid throughout his body, and in the days prior to our return his output had reduced to practically nothing despite the repeated use of strong diuretics.

A huge thank you is due to everyone at Helen DeVos Children's Hospital for pulling out all the stops to get Adam home safely. And also to the cabin crew on our Delta flight from Detroit to Heathrow, who were helpful, considerate and patient with us throughout. I'm still not entirely sure how we made it back so (relatively) uneventfully, but we did.

Since returning to Epsom we've been to the hospitals we needed to go to, talked to the people we needed to talk to, and set in motion the things we needed to set in motion. We have access to the 24-hour symptom management team at the Royal Marsden, our community team are also able to provide round-the-clock cover when we need it, and we've been referred to the Shooting Star CHASE hospice in Guildford. Now we'll just take life one day at a time.

For the moment Adam is reasonably well in himself; he is comfortable and has even been back playing on the xbox a little -- something he'd shown very little interest in for many many weeks. Simply being home has been a huge fillip for him. He has a whole list of things he wants to do, places he wants to go, and things he wants to buy. Whether he's well enough to do any of them on any given day is another matter though. His fluid retention has resolved -- which two weeks ago we had seriously doubted it would, suggesting the immediate cause, at least in part, was a side-effect of the medications he'd been on.

So here we are. And it's turned out to be of no consequence how long I have known it would come to this. It's mattered not how long I have spent trying to prepare myself for it. I was not, and am not, prepared. Nothing could have prepared me; for how difficult, and painful, and unfathomable, the reality is.

We are now going to deal with things privately, in our own way. I'm not intending to update regularly, either here or elsewhere, it's just not me. Instead I will post as and when I feel I have something to say. In the meantime please keep my little boy, and his bigger brother and sister, in your thoughts and in your prayers.