In celebration of the life of ...

One of the most undecided things about yesterday's service was what to call it. It wasn't a funeral and neither was it a celebration. In the end, and rather at the last minute, we decided the Order of Service should carry the title 'A celebration of the life of'. It wasn't until after the event that I finally realised what the service actually was, and that there was no conflict in it; a simultaneous celebration of Adam's life and mourning of his death. Mind you, that would have been a rather pompous, and generally rubbish, title to put on an Order of Service.

For anybody who doesn't follow Adam's Appeal on Facebook or Twitter, this is his Chapel Service …

Reflections

Hey Adam,

After two weeks of not being able to think of what to say to everybody, all of a sudden it dawned on me. It’s not everybody I should be speaking to, it’s you.

I’m very proud of you son. Not for any extraordinary feat, not for achieving this, or winning that. I’m simply proud of YOU. My polite, courteous, kind, caring, loving, smiling, funny, happy, little boy. An ordinary child, with an ordinary child’s outlook on life, despite facing things no child should have to face.

You had every right to bemoan your lot Adam, and yet in four years I could count on the fingers of one hand the times you did so. It would’ve been understandable if you’d grown to hate everything you had to go through, and everyone who put you through it, and yet you never let hate enter your heart. You never envied, you never begrudged, and you never sought pity. You lived each day as best you could; and if today was a rubbish day you didn’t dwell on it, just hoped for better tomorrow instead.

Hospitals, nurses, drugs, scans, transfusions, pokes and prods ... they were a sideshow. Adam’s Appeal and publicity, that was slightly bemusing. Home, family, friends, and having fun that was the important stuff. Remember when we took you to Germany for treatment Adam? You used to cry as we drove away from the house because you were leaving Jake and Jess. We had to refer to them as Thing1 and Thing2 so you didn’t get to hear their names. More recently when you were in America, it was never long before you were ready to return home again.

Things didn’t work out as we’d hoped little man, but know that we always did the best we could, and we always did it out of love.

I knew you Adam. I had the privilege of being your Dad. Others only got glimpses, and some saw only that which I shared with them. Today is your day, and you should take centre stage. So this is my tribute to you - I hope you approve.

Love you son. Always.

Our brother … forever

Your beautiful smile
could light up the room,
like a shining beacon,
the sun, and the moon.

Your infectious giggle
and your cheeky grin.
Your tongue poking out
… well where do I begin?

Loving and caring,
courageous and brave.
You taught us all much
about how to behave.

Gadgets, light sabres,
morphers and guns,
you sure were a boy
who liked to have fun.

That fun and that laughter,
those games that we played.
I really must tell you,
I wish you had stayed.

But you'll be in our hearts,
we are birds of a feather.
Siblings together,
our brother …. forever.

They say there is a reason

They say there is a reason,
They say that time will heal,
But neither time nor reason,
Will change the way I feel,
For no-one knows the heartache,
That lies behind our smiles,
No-one knows how many times,
We have broken down and cried,
We want to tell you something,
So there won't be any doubt,
You're so wonderful to think of,
But so hard to be without.

As I've said to a few people, yesterday was not a day that any parent can look forward to. But thanks to the people who helped put together the service, and those who came and shared it with us, we will always be able to look back on the day with satisfaction and contentment knowing we did it right for our son.

Here is the message I posted on Facebook last night.

---

Thank you to everybody who came today as we said goodbye to Adam. And thanks for all the messages of support that we have received. It was such a hard day, the like of which none of us have ever experienced before, nor ever wish to again. I would have liked to have gotten all my words out without breaking down, but I always knew that part was likely to get me and having written it I couldn't leave it out.

The day though hard was also wonderful in its own way. The tone was perfect, just as we had wanted it, and everybody who participated made it what it was.

To Roz and the choir for their beautiful rendition of "I wish I knew ..." and for carrying us all in the hymns, Adam and Hels for the perfect music to accompany us in and out, Lisa for preparing the order of service, Martin Ellis for playing the chapel organ, Emily for delivering Alison's chosen reading in her stead. Sincerest thanks to you all.

Thank you to Canon Esdaile who has been brilliant throughout this difficult process, helping us plan the order of service and conducting the services at the Chapel and Crematorium.

Thank you to Epsom College for not only granting us our wish to use the Chapel for Adam's service, but for providing refreshments afterwards in the College and for giving us their total support throughout.

To my wonderful daughter Jess who somehow transformed herself from an emotional wreck to a tower of strength in order to deliver her reading ... I have a heart bursting with pride. As we left the Chapel I said to her how did you do that? She gave me a nod and said cheekily 'it's a gift'. Well it's definitely something special that's for sure.

And to my little boy whose life we celebrated and death we simultaneously mourned today ... thank you for the love that will live on forever in our hearts. x"

---

Sweet dreams little man. Daddy loves you so much. Always and forever. x

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.

More problems ...

Made it safely home with Jake & Jessica. Now got to decide when to fly back out again — probably be when I have just started getting over the jet-lag!

For a few days there's been a noticeable 'stutter' in Adam's breathing. When he exhales it's not a continuous motion, but rather he stops part way through and then resumes. I'd asked him about it a day or so ago and he said he was fine, as he does. When I continued to ask him questions such as 'Does your chest feel tight at all when you breath in and out?' he became rather exasperated, as he does, and told me 'NO. I ALREADY TOLD YOU IT'S FINE. NOW STOP ASKING ME QUESTIONS!"

On Thursday night, after I'd left, he developed a cough, and Alison noticed his breathing was not quite normal. Of course I hadn't discussed anything with her (sorry Al) so she asked Adam all the same questions that I did, and got the same responses.

In clinic on Thursday morning Adam's O2 saturation was 94%, which isn't terrible but it is a little on the low side; this can be caused by the finger sensor not being left on long enough, or needing some slight readjustment. Oftentimes simply putting the sensor on a different digit is sufficient to elicit a higher reading. On Friday morning it was 94% again. When Dr Sholler listened to Adam's chest she could hear he was a little constricted, and so ordered a chest x-ray which took place shortly afterwards.

It turns out Adam has some fluid on both lungs. The cause is thought to be one of the medications he's on (dasatanib) as it's a known side-effect. Fluid retention probably also goes some way to explaining the weight gain that Adam's experienced (although I'm sure some of that is also real as he has been eating a little better since we've been stateside).

Of course it's not terrific news, but at the same time it's good that the x-ray showed up the problem, and that there's a likely cause. We've stopped dasatanib (and thalidomide — a different story, read on for that one) for the weekend, and Adam's had a diuretic to flush out excess fluid. Thalidomide we stopped because Adam developed hives on Thursday night after taking it. We've increased the gabapentin, and the immediate plan/hope is to restart everything early next week. Of course we don't know at this stage that the problem with Adam's lungs is definitely dasatanib — we will only be able to surmise that if it resolves now we've held it.

Going forward the plan/hope is that this new therapy combination will be having some positive impact on Adam's disease, and he can continue on it by managing the adverse side-effects as they arise and giving him breaks off-therapy when necessary. On Monday or Tuesday of next week we'll have some indication of whether or not Adam will be able to return home for a few weeks to continue therapy. Clearly a lot is going on right now, and the situation is always going to be somewhat fluid. But we're keeping our fingers crossed that he'll be able to come back to the UK for two or three weeks before flying out again for scans ...

Treatment stops, treatment starts again ...

So. It was a Thursday when I posted the last updated 'Treatment begins again …'. On Friday morning Adam woke with an excruciating burning pain in his upper back -- just below his right shoulder blade. We gave him a hefty dose of pain meds and as he slept I called his doctor, as this was clearly not one of the usual aches and pains Adam suffers from now. He'd actually started complaining about it the day before, but at that point we'd thought it was more of the same. But on Friday morning, both from how he described it and how it affected him, it clearly was not.

Fortunately, Dr Sholler was around on Friday; she said to see how he was when he woke up and if the problem persisted to take him up to clinic to be assessed. He woke after lunch and if anything the pain had worsened. He could no longer bear anything to touch his skin in that area, and when he moved the intense burning sensation would cause him to scream out in pain. It was a harrowing and horrifying sound; full-throated screams of pain, as if an imaginary hand was pressing scalding hot coals against Adam's back.

A second call to Dr Sholler and we got Adam in his pushchair and off to the hospital, shirtless, a blanket for warmth, strategically positioned so nothing was touching his back. At this point neither Alison nor I had any idea what was going on; this was new to us. When we got to clinic they were waiting for us to arrive, a quick set of vitals, and straight into an exam room. Ten minutes later Dr Sholler was on the scene to assess Adam. Verdict was neuropathy caused by the new medications -- most likely the Thalidomide even though it was only one week at the lowest dose, one-third the final target dose. Only option was to stop all therapy and wait for symptoms to abate. As well as the back pain, Adam was also experiencing numbness in the right side of his lip and chin.

We started Adam on gabapentin for ongoing neuropathic pain, and managed the immediate pain with opiates. The balance (as always) to be aggressive enough to keep Adam comfortable, but also for him to be awake and alert sufficiently often for us to get food and drink into him. As the weekend wore on Adam's pain subsided and the intervals between doses of pain medication widened. However, at the same time swelling appeared in Adam's lip, chin, and above his right eye. On one hand you know it's almost certainly all part of the same reaction. And on the other you cannot help but worry that this is something else -- something even more sinister.

By Monday Adam was sufficiently better that we restarted two of his targeted therapy drugs, Thalidomide we held off until Thursday. He's been back on the three-drug regimen (albeit still at the lowest dose of thalidomide) for 6 days now. There hasn't been another severe reaction yet, but at various times he has complained of numbness, the palms of his hands feeling hot, and his leg feeling 'weird'. I can only guess that the gabapentin is masking the worst of the neuropathy, but it still doesn't bode for the chances of Adam continuing long term on this drug, and I certainly can't see us dose escalating. We may need an alternative plan.

Jake & Jess flew out to Detroit last Tuesday by themselves, looked after by our friends at Delta Airlines. It's been great having them out here, although it's not been your typical Easter holiday vacation for the pair of them. We rented an out-of-season holiday house in Holland, Michigan next to Lake Macatawa where we've all been staying. It's a 45 minute drive to the hospital in Grand Rapids, but it's worked out pretty well for us so far. Tomorrow I am flying back home with them ready for the start of school next week, and I'll fly back out in a few days. Looking after Adam, making him comfortable, getting medications down him, ensuring that he drinks enough, getting him to eat regularly, is a full-time job. Day after day, it is, quite simply, relentless. But that's where we are, and that's how it is. It requires both of us to be able to do what we need to do, and so I'll be back out here as soon as I can. Except for parents who have been in this situation before us it's probably difficult to understand just how hard this all is. It probably even sounds a little pathetic requiring two of us in order to cope -- I can only say believe me, it's not.

We've been fortunate that there is a large aquatic centre ten minutes drive from where we're staying, complete with a 90° therapy pool. We've been in twice, the second time, on Saturday, Adam had an absolute blast. Jake and Jess came in too. We played with a beach ball -- throwing, pushing, heading -- and only got told off once for being a little too boisterous. It's been a long time since Adam has laughed and had so much fun. We'd probably been in the pool for in excess of half-an-hour, and there was only five minutes of the session left when Adam brought things to an abrupt end by deciding to perform a forward roll and getting water stuck up his nose. The main pool at the centre also has a splash zone with inflatables, a zip wire, and diving boards so after spending time in the therapy pool Jake & Jess have been going in there whilst Adam watches from the sidelines wrapped up in his towels.

On Sunday Adam ached all over; his back and both legs, shoulders. The after-effects of the previous day's exertions. He needs regular exercise, but gentle exercise, and so we will definitely keep on at the swimming, even though Adam might not always be so keen when he's not feeling as good as he was on Saturday. Sometimes he needs bullying into doing things, when his general malaise would rather he laid on the bed and watched his laptop. Sometimes he tells me he hates me, and calls me mean, but it's more than outweighed by the reward of seeing him in the pool and doing something positive.

As much as I hate to admit it, we are started to rack up some hefty medical expenses. With Adam's inpatient stay at the start of our trip, a monthly drugs bill of around $25,000, plus all the clinic visits, biopsies, tests, etc. I know that costs are escalating. So, if there are any runners out there looking for a cause, or people wanting to do something else to help Adam then please get in touch with the team at the NB Alliance -- http://www.childrenscancer.org.uk/contact.php.

Treatment begins again ...

Quite remarkably, given that Adam developed a potentially life-threatening infection on our first day in Grand Rapids, we are just finishing week one of his new treatment combination on the molecular-guided therapy trial that we've enrolled him on. Clearly we could have done without Klebsiella Pneumoniae rearing it's big, fat, ugly, head but to think we haven't lost a single day time-wise as a result is almost beyond belief.

With Craig doing his sterling work we got out of the hospital on the 15th with antibiotics and supplies to do Adam's infusions at home (or in our case Renucci House) until Tuesday night -- making a total course of 10 days IV ertapenem. His white blood cell and neutrophil counts were on the up, a good sign of his body's growing ability to fight the infection itself, though still someway short of where they ideally needed to be. And so began the daily routine; 7am antibiotics out of the fridge, 8am flush, 30-minute infusion, flush, heplock; 7pm antibiotics out the fridge, 8pm …

All went without a hitch; my first test in home nursing and I passed with flying colours. Although I must confess, after the best part of four years watching nurse after nurse pushing stuff into Adam's veins, the very first time I started applying pressure to the syringe it did feel just a little bit odd to be doing it myself.

We'd arranged to have Adam's blood counts rechecked on Monday, having given him a G-CSF shot on Saturday and skipped Sunday. As we'd hoped, his counts had continued to improve, and his neutrophils at 3,000 were now right where we wanted them to be. None of his repeat blood cultures had come back positive for infection. His sodium, potassium, albumin, and creatinine levels, which had been all over the place during the previous week as the stress of the infection took it's toll, were back within normal ranges. The whole situation was beginning to look brighter.

The last antibiotic went in on Tuesday evening and on Wednesday morning we took Adam up to clinic to have his port deaccessed -- blessed relief for the little boy who'd been accessed for 12 days straight except for a couple of hours between line changes. As Adam has a port now (as opposed to a hickman) he doesn't always have a line attached -- when he does that's referred to as being accessed. Otherwise he just has the port site on his side under the skin where the line into his vein is channeled up to. His movement is restricted when he's accessed, and he finds it difficult to sleep lying on his right side.

We saw Dr Sholler at clinic and she told us the tumour analysis was going well -- the genomics report should be available on Thursday with a view to resuming treatment on Friday.

We returned back to Renucci House, and after he'd had a couple of hours sleep during the course of Wednesday afternoon I checked Adam's temperature. He had been snuggled under the duvet -- we brought his own duvet and pillow out with us this time for added comfort -- and he felt a little hot. 38.6°. Shit. Or worse.

We don't generally panic any more, we've been doing this stuff far too long for that. But I can tell you -- this was worrisome. Having been warned that the infection Adam acquired was a particularly nasty one, having been told several times that it has a habit of coming back even after antibiotics, and having listened to the senior doctor on the ward saying he hoped Adam would recover, who wouldn't be worried? We pulled his duvet back and over the next 5 or 6 hours watched nervously as his temperature fluctuated around 38° -- 38.1°, 37.8°, 38.0°, 38.1°, 37.9°, 37.9°. Alison had packed the overnight suitcase, and we were all ready to make the call to be readmitted to the hospital. Another reading over 38.5° and that was it; back to the hospital, back on antibiotics, unable to start treatment on Friday -- and that was supposing the infection wasn't even back. If it was, if the 10 days of antibiotics and Adam's recovering immunity had failed to deal with it, what then? I decided I wasn't even going to bother going to bed. At 01:00 Adam's temperature fell to 37.4°, followed by 37.0° at 01:30, and 37.2° at 02:00. And at that point I breathed a massive sigh of relief and called it a night.

When Adam woke on Thursday his temperature was still normal, where it remained throughout the course of the morning and afternoon. The evening followed a similar pattern to the night before; temperature rising, though this time not quite as high, and for not quite as long. Whilst staying vigilant, and checking regularly, with the benefit of the previous 24 hours we weren't quite as worried this time. On Friday morning Adam's temperature was again perfectly normal, and we've not had a repeat episode since. I have no idea what the cause was, I'm just thankful it wasn't worse, and it didn't lead to anything.

On Friday we met Dr Sholler to discuss the new treatment plan. Adam needed a blood transfusion, and it turned into a long day in clinic as a hastily arranged electrocardiograph and echocardiogram were required to monitor potential side-effects of the new targeted combination therapy; thalidomide, dasatanib, and pravastatin. These drugs, amongst others, scored highly on Adam's genomics report and this particular combination was then selected by a panel of oncologists based on Adam's individual circumstances, history, etc.

Each cycle of treatment consists of 28 consecutive days of these three oral drugs, and the first cycle must be completed at the study hospital. Which means Adam will be out in Grand Rapids until mid to late April at least. We always expected this, the only variables being whether Adam was going to be well enough to even enrol on the study in the first place, and after that whether each cycle would be 21, or 28, days in duration. The big shock came when we found out the cost; thalidomide in particular is crazy expensive. The cost of a 28-day supply of the drugs is around $25,000. We are ever thankful to have the NB Alliance supporting us, and Adam's Appeal funds to give Adam the opportunity to hopefully benefit from this new trial.

Adam has tolerated everything well so far; thalidomide has a sedative effect and so is taken just before bedtime, apart from that there are no other restrictions. He's been suffering from various aches and pains, including a recurrent and persistent one in his lower back, but we are managing things reasonably well. We have to balance effective pain relief against the inevitable consequence that he will sleep and therefore be unable to eat or drink anything. Eating in particular remains an issue, but he's maintaining his weight at the moment and realistically that is our goal at this stage.

We discussed physical therapy with Dr Sholler, to try and improve Adam's muscle strength, mobility, etc. She suggested aqua therapy, and with Adam being keen we went along to a pool on Wednesday to give it a go. Alison and I came out with the same very mixed emotions. Adam, bless him, tried his absolute hardest, and he was so keen to get in the water. It's been a long time since we've seen him like that -- he even tried swimming under water to play trick on his new therapist. Unfortunately the pool was just too cold, colder than it was supposed to be; for a little boy with zero body fat and incapable of vigorous movement he was shivering within minutes and we had to get out shortly thereafter. But we've not given up. Adam's is happy to try again so we are in the process of finding a different, warmer, pool that we can go to. Providing it works out, and his immunity remains high enough, this will hopefully become a regular activity.

With the Easter holidays here, Jake and Jess are going to fly out next week to be with us. They're being escorted to Heathrow by grandparents and then flying out by themselves. Either Alison or myself will be there to meet them at Detroit airport when they land. We've rented a place by Lake Michigan, and just hope Adam stays out of the hospital and well enough that we can make the most of the time we'll all have together. They are amazing children my eldest two, getting on with their lives as they have in spite of everything that has gone on with Adam over the years. I do miss them though. Jessica was just finishing infant school when Adam was diagnosed; she'll shortly be starting her final term at junior school. It sometimes feels like her growing up has completely passed me by.

This is a photo of Adam and Jessica taken just a few weeks before he was diagnosed in 2009 …

A Week In The Life: Infections, Scans, Biopsies, Home Infusions ….

Adam is still in the hospital. This is his eighth day of incarceration, each one costing a small fortune. He has remained afebrile since last Friday, and repeat blood cultures continue to come back negative for ESBL Klebsiella Pneumoniae bacteria. This is, of course, great news, but we regard it with caution. The infection he acquired is a particularly nasty one that can return even after treatment with antibiotics, and negative blood cultures do not necessary mean there is no bacteria remaining anywhere in Adam's body.

The name Klebsiella Pneumoniae suggests Adam has pneumonia, but he does not. He has bacteremia - the bacteria found its way into his bloodstream which is what makes it so dangerous, particularly in an immunocompromised patients such as Adam. All that said, things are heading in the right direction; no fevers, negative blood cultures, and Adam's white blood cell count (a measure of his body's ability to fight infections itself) has risen steadily with each passing day. Today it's 1.5, we want it to get to around 5. However, 1.5 is a lot better than the 0.03 that it was when he was first admitted.

Looking back on the past week we actually got very lucky. Adam spiked a temperature on our first morning in Michigan, it could easily have been the day before at 30,000 ft over the middle of the Atlantic; the bacteria infection clearly responded to the broad-spectrum antibiotics which isn't always the case; and we had positive cultures and sensitivities back from the microbiology lab that allowed us to change to a targeted antibiotic within two days of admission to the hospital.

Such is the fine line that we often walk in the world of paediatric oncology …

One of the things I love about Dr Sholler is that she 'gets it' as far as what parents go through on this terrible journey. She didn't encourage us to come back to Grand Rapids, and she didn't discourage us either. She made it clear Adam would be welcomed back, but it was our decision to do what we felt was right. A few weeks ago Adam was in no position to come back out here, we wouldn't have even contemplated trying given where he was at in terms of pain and feeling generally awful. But then we managed to get on top of things, Adam became far more settled, and coming back out went from feeling like the wrong thing to being the right thing.

The plan for our visit was FDG-PET/CT on Monday, with bone marrow and lymph-node biopsy Tuesday for enrolment on the new molecular-guided therapy trial that opened here only last week. Ordinarily an infection of any sort will scupper any and all plans for therapy, but the team here got Adam prepared for Monday's scan and it went ahead as planned. He was still pretty wiped out, but apart from having to consume a contrast drink the scan doesn't require much else from Adam himself. Unsurprisingly he slept through the entirety of it.

Scan results showed progression. Of course that's horrible news, but it wasn't anything we weren't expecting. It says something when you're pleased that the scan isn't as bad as you thought it would be. There was an interval increase in intensity of the skeletal uptake, growth in the lymph nodes, all of which are now at least partially calcified, but no new areas of disease. It wasn't catastrophic, it wasn't 'get-back-on-a-plane-and-return-home-again' bad.

And so to Tuesday. If the PET/CT scan was looking shaky at one point, the prospect of bone marrow biopsies, and a long needle lymph node biopsy, on a child with an ESBL infection and zero neutrophils, might be expected to be a complete non-starter. The idea of enrolling on a clinical trial whilst getting treated as an inpatient equally so. But things are not quite the same with Dr Sholler. There are rules for sure, you cannot go on study with an active infection, period. But there is also flexibility, and a consideration of the big picture. There are competing risks, big and small, some more immediate that might warrant delay and others less immediate but that would increase with the passage of time; some lines that can't be crossed, and other boundaries that can pushed a little. How did we feel about going ahead despite the current situation, after all Adam was on strong antibiotics? Delaying biopsies beyond Tuesday/Wednesday would mean the analysis reports coming back a full week later, meaning another week before Adam could begin treatment even if he were well enough to sooner. Provided blood cultures taken Sunday morning remained negative 48-hours later on Tuesday morning (which they did) Adam would be eligible for the trial. For me it was a simple decision. The bigger question mark was whether the interventional radiologist would be prepared to perform the procedure given Adam's condition and blood counts; we left Dr Sholler to sort that one out. We had our answer when, during Monday evening, the nurse came in to say Adam would be getting platelets overnight in readiness for the following day.

Monday night was one of those horrible hospital nights. Machines beeping, interruptions, platelet transfusion, monitoring vitals, blood draw, monitoring vitals again; we didn't really get any settled sleep until 4am. And of course on the day Adam had to be nil-by-mouth he woke up complaining that he was hungry - something I'd not heard him say for weeks and weeks. From telling him he's got to eat and at times practically force feeding him, I'm now saying he can't have anything to eat until mid-afternoon! Well, I didn't actually say that, of course, I just told him he couldn't eat yet for a while. If you repeat that enough times over and over eventually you get to a point where you can say 'another half-an-hour and you can have something to eat and drink'.

Adam was as grumpy as grumpy can be on Tuesday. He just gave off this look that said 'You'd better have a very good reason for talking to me … or don't.' Not many people did. He lacked sleep. He was hungry. He was apprehensive about what was coming, he knows how it feels afterwards. If he wants to be grumpy under such circumstances I figure that's his prerogative. The anaesthetist was very approachable and listened to us explain Adam's post-anaesthetic apoplexy after getting propofol. He was more than happy to use ketamine in the first instance, and only resort to propofol if Adam started to move - clearly being totally still is rather important whilst undergoing a needle biopsy that goes in through the back, down past the kidney and into a lymph node in the pelvic region. Everything went to plan, the team got what they needed and Adam returned to the recovery area in a spaced-out ketamine-induced sleep. Only a small amount of propofol was required, and thankfully Adam woke up slowly and without adverse effects (ketamine can cause waking nightmares). As an added bonus he took longer to wake up than usual, which was also helpful as he's not allowed anything to eat or drink for another two hours after the procedure - in case he suffers an internal bleed that requires emergency surgical intervention.

Tuesday night was another rubbish night, but for a different reason. All the sleep Adam had during the day meant he wasn't able to settle down at his normal time. So on Wednesday he was grumpy as grumpy can be. Again. From lack of sleep, and a very sore back complete with three fresh new holes in it.

Since then Adam has gradually improved; the pain in his back from the biopsy sites has receded, he's had a couple of very good night's sleep, and he's been eating and drinking alright too. We don't have anything planned now in terms of treatments or procedures until after the analysis reports on Adam's biopsies come back next week. Which hopefully means we have a full week to get clear of this infection completely. In which case, rather miraculously, we will not have lost any time as a consequence of Klebsiella Pneumoniae.

This afternoon we've been discharged back to the Renucci Hospitality House to continue Adam's antibiotic treatment as a home care patient. Tonight we have a nurse coming to us, to train me how to manage Adam's line and administer the twice daily infusions. Each dose is provided in a separate self-infusing portable pump that we will keep in a special fridge back at Renucci. We have a plan for next week in terms of going into clinic to check counts, have blood taken for repeat cultures, etc. But if this works out we're done with being an inpatient; it'll be me infusing, flushing and hep-locking for the next four days. How cool is that? Adam's pain remains under control with the fentanyl patches we're using. It's our fervent hope it remains so, and we get through to the resumption of treatment without further setbacks. We are also realistic enough to know that with this disease not only does it not always work out that way, it doesn't often work out that way …

It wouldn't be right for me to finish this update with saying something about the care Adam has received in the week that he's been inpatient here at Helen DeVos Children's Hospital. I know I speak very highly of Dr Sholler, but across the board the doctors and nurses that have been looking after our little boy have been exemplary. There are a few annoying rules, but I can hardly blame the individuals that have to abide by them can I? And even then, we've been listened to and our wishes accommodated as much as has been possible. Nobody has broken the rules for us, but they may have been bent a little once or twice for Adam's benefit. And to me that's the only consideration. Always. It's not about me, or Alison. It's about making adjustments here or there, sometimes seemingly trivial or minor, that make Adam's life just that bit more comfortable. But never anything that exposes him to additional, or unnecessary, risks. And finally, extra special thanks to Craig … without whose efforts we'd still be in room 903 in the hospital, instead of room 306 in the hospitality house.

Not great news ...

Adam has a multi-antibiotic resistant (ESBL) form of Klebsiella Pneumoniae. We've changed to a completely different type of antibiotic that bacteria from Adam's blood culture displayed sensitivity to in the lab. Although the broad spectrum antibiotic he was on before has clearly had an immediate beneficial effect, if we continued on this path the bacteria would just up-regulate its resistance gene to overcome it.

We are now under isolation control, and had a visit from the infectious diseases team earlier this morning. All staff entering Adam's room must be gloved and gowned, whilst Alison and I are not allowed to enter the communal areas of the ward. Moreover, Adam will need to be gowned and isolated whilst in the hospital for the next six months to a year. Now we know Adam prefers to have his own room whenever possible, but as Alison told him earlier this is a rather extreme way to go about it.

Adam's immune system remains very low; he is getting daily shots of G-CSF and it will be very important to see his white blood cell count improve over the coming days in order for him to fight off this infection as quickly as possible. We are still on track for a PET/CT scan tomorrow, but beyond that we don't yet know what impact this is going to have in terms of treatment. My instinct is a lot, but we'll see. It's anticipated that antibiotics will continue for the next ten to fourteen days. At present Adam remains reasonably well and has been afebrile since Friday evening, which is something at least.

Back in the U.S.A. ...

We are back in Grand Rapids.

Adam had a reasonable week last week, generally free of pain and ok(ish). After a lot of back-and-forth we seem to have figured out the right combination of pain meds that he requires for now to keep him comfortable. So we put together a hastily arranged plan to fly back out to see Dr Sholler, re-evaluate Adam's disease, and discuss treatment options. The support we've received from Dr Sholler these past few weeks has made such a difference; we've spoken pretty much every other day including at weekends, and in between I'll get the occasional message asking how Adam's doing if we've not spoken for a while, or he was having a difficult time when last we talked. And it's not as if she isn't a very busy person.

We've also received tremendous support from our community team - we would be lost without them, and from the symptom management team at the Royal Marsden. When we spoke to Adam's consultant at the Marsden a few weeks back she made it clear that making Adam comfortable was their primary objective, but also said she would support us in whatever it was we decided to do.

Having decided we wanted to take Adam back out to the U.S. provided he remained well enough, there were practical considerations that we needed to plan around. Adam is requiring blood once a week, and platelets twice a week at the moment. The combined effects of disease and treatment on his bone marrow. Last weekend, due to a very low platelet count, he had a slow but persistent nosebleed that blocked both nostrils with clotted blood that required us to take him up to Epsom Hospital at five in the morning. When eventually he cleared his nostrils after getting transfused the one side must have been about 8cm long; it was enormous. This episode obviously served to cause concern about the prospect of Adam spending 9 hours at 30,000 feet flying across the Atlantic.

Our plan was therefore to prepare Adam for the flight on Wednesday by giving him a blood transfusion, double platelet transfusion, a shot of G-CSF (Adam's neutrophils were now zero), 4mg of Dexamethasone (steroid), and changing his Fentanyl patches (pain relief). Our hope was we'd get all this done, and be able to settle him for a good night's sleep with a 6am start required on Thursday to catch our flight. Well, what a disaster Wednesday turned out to be.

Tara came to do Adam's bloods at 10am, which set the wheels in motion. However, it wasn't until 5pm that Epsom were ready for us to go up there; not a great start as a late finish was now already guaranteed. By the time his blood was up it was nearly an hour later, and it was around 9pm by the time they'd finished. The first pool of platelets then went up. Now the first of the bad news; they only had sub-cutaneous (injection) G-CSF. Adam demands IV when he's already accessed, and he was adamant nobody was going to stick him with a needle. From bad to worse; the first pool of platelets finished and I'm now visited by the Registrar who apologises 'but only one bag of platelets were issued.' A second bag is being issued now by St George's, the driver is still there, and it'll be with us in 1-2 hours. So, I'm faced with taking Adam home without G-CSF and only one bag of platelets, or having him stay in the hospital until very late, and then waking him at the crack of dawn for a long day of travel. The nurse then comes in to say they've found some G-CSF that they can give IV, which made my mind up as we'd give that whilst waiting for the second pool of platelets. G-CSF done, I settle down in the chair to rest whilst Adam sleeps on the bed …

I'm woken at 11:45pm by a knock on the door and a second doctor asks to speak to me outside. The one from earlier is still on the ward but I think they have decided to take it in turns to tell me things I'm not going to like hearing. She is very sorry, the platelets have arrived but they've issued the wrong ones. They are re-issuing the correct ones now but it'll be another two hours before they arrive.

I think my response was something along the lines of "What a complete and utter fuck-up." I didn't raise my voice though I hasten to add, but only because I was too drowsy from napping in the chair.

So my choices are (1) wait around to give Adam the second bag of platelets, take him home at 3am and then wake him up at 6am to go to the airport, or (2) have them de-access his port, take him home and travel on a single bag of platelets. I opted for (2); and I may not even have asked nicely for him to be de-accessed, I can't quite remember exactly. As I told them, the one time you really need things to go to plan, and for people to be on top of things ...

We get home past midnight, I put Adam straight to bed and finish my packing - eventually getting to bed myself just before 3am.

Of course, we fully expected our trip on Thursday to be a complete and utter nightmare. Adam would be tired, irritable, grumpy, uncooperative, tearful, we'd struggle to get him to eat or drink anything. As it turned out it was nothing of the sort. Adam was great company from start to finish. He didn't sleep at all on the plane, just watched his iPad; then settled down in the car on the drive from Detroit airport.

Having been unable to secure a room in either Renucci Hospitality, or Ronald MacDonald (due to the last minute nature of it all), and needing somewhere to prepare food for Adam we booked a little cottage for 4 nights in Newaygo, around 45 minutes drive North of Grand Rapids. The plan was for a clinic visit on Friday, probably with a platelet transfusion to see us through the weekend, and then to have a quiet couple of days before getting down to business next week.

So much for that idea. On Friday morning Adam spiked a fever of 39° and is currently an inpatient on the 9th floor of Helen DeVos Children's Hospital with a confirmed gram-negative blood infection. He's on IV antibiotics, and although his fever has subsided since late yesterday, he's been experiencing rigours (uncontrollable shakes) so they are keeping a close watch on him. Gram-negative bacteria are more difficult to deal with than gram-positive, so it's not the best news to start our visit with. Plans for next week will depend on his continued response to antibiotics, and how his white blood cells respond to G-CSF. That little cottage in Newaygo has long since been forgotten - I packed up our stuff this morning and we've now got a room at the Renucci Hospitality House adjoining the hospital.

Untitled

I am aware that it's been a while since I posted any updates. Truth is despite the fact that much has happened I haven't got very much to say. Truth is I don't want to write it down anymore. I'm living it, but I no longer feel like I need to be reading and writing it too.

Adam has been having a tough time these past couple of weeks. We had stopped all treatments completely for ten days, but as of now he's back on some of them. We are looking at possibly getting back out to Grand Rapids sometime in the next fortnight. Possibly. Hopefully.

Sorry for the brevity … please keep our little boy in your thoughts.

Untitled

It must be time that time again. Time for a brief update. And brief it will be.

Adam is not doing so great since returning from Grand Rapids. Three repeat urine samples (I guess one of the 'missing' ones turned up) all tested positive for coliform infection (e-coli), and so Adam was started on intravenous antibiotic to treat it. He then began having issues with his bottom again, and it's subsequently transpired that he may well have a second abscess forming next to his anus; on the opposite side from the one that burst on Christmas Day, and which has now all but healed up. Considering what he went through with the last one I am quite surprised that he hasn't been at all traumatised by the thought of a repeat performance. I know I would be. He's now on another IV and third oral antibiotic for the suspected abscess (it's not well-enough formed yet for us to know that's definitely what it is), however antibiotics as we know from previous experience are seldom effective in dealing with such things. His blood counts are very low, and neutrophils are an unhealthy zero, making him very vulnerable and extremely susceptible to bacterial infection. He's been on G-CSF since Tuesday but it's had absolutely no effect. With all the IVs he's on at present he's having to be hooked up for 2-3 hours daily; yesterday and today that meant being up at the hospital, but whenever possible our wonderful community team are coming out to administer his meds. Eating continues to be a major problem and Adam has lost further weight. Reluctantly we have decided it is necessary for him to have a feeding tube so that we can support him nutritionally. The thought of a second impending abscess with all that will bring finally tipped the scales. He's not happy about the prospect, not happy at all, but he understands. He's had so many false starts over the last four months, a few good days when things looked to be on the up, followed by a few tough weeks when any progress he had made is wiped out … and more besides.

Home ...

So Adam made it home on Monday … just. No sooner had I started to write the last post about the scan results and his planned return, than he began to experience aches in both arms and both legs. Wednesday (23rd) had been a good day; he'd been in clinic playing Beyblades with the nurse, care worker, and play specialist; he'd pushed his buggy all the way through the hospital and back to Renucci; he'd been downstairs playing fußball with his Mum; he'd been out in the snow, albeit not for very long as it was too darn cold.

On Thursday his arms and legs had started aching. By Friday he couldn't move.

He'd not had aches and pains like this at all whilst he'd been at home -- but then again he was mostly lying down because of the abscess. Whilst it's impossible to know precisely the cause the location, above both knees and in each upper arm, made us conclude it was exercise on Wednesday, coupled with effects of his disease, medications, and lack of activity over the last 3+ months. Because the flights home had been rescheduled for Monday rather than over the weekend, Friday's clinic visit was put back to Monday morning. Adam spent the whole of Friday in bed lying prone on his back; the aches in his arms preventing him from making even the slightest movements without Alison's help.

Saturday the aches had improved slightly, he could use his arms to manoeuvre himself around in bed. However, he now had a temperature.

Not so high as we had to take him to the Emergency Room (which is how paediatric oncology works over the weekend at many hospitals in America), but not far off. One reading would be 38.2° and twenty minutes later it would be 37.6°. When we had all the shenanigans with Adam's temperature in October last year, we invested in the same type of very accurate digital thermometer that they use at many of the hospitals -- Epsom, St George's, Helen de Vos. Oddly his temperature under one arm was consistently higher than under the other, it isn't normally. Eventually, Alison decided enough was enough and called the ER, expecting to be following that up by taking Adam in to have blood drawn from his central line and a peripheral vein, and start IV antibiotics. However, the on-call doctor decided the most appropriate course of action was to continue to monitor and observe. Adam's temperatures were not acute, his neutrophil count (indicating his natural ability to fight bacterial infections) was good, and he was asymptomatic. So Alison stopped packing the overnight case, and went back to keeping a regular check on Adam. As the day wore on, so the temperatures receded. Not heading straight up to the ER had proven to be the right call. Interestingly, had we been here in the UK, I guarantee the doctors would have wanted Adam admitted to Epsom Hospital for blood cultures and antibiotics.

Sunday the aches and pains had continued to improve, but they were still very much present. The fevers had gone completely. Now the diarrhoea started.

It didn't last too long, but it was sufficient to wipe Adam out. He was no longer eating and the chances of getting him home on Monday were looking rather slim.

By Monday morning the aches were still there, improved from their peak but very much confining Adam to his bed and pushchair. He'd had no more fevers, and hadn't opened his bowels since the previous afternoon. Over the weekend Alison had alternated between starting to pack, and giving up at the seeming futility of packing when Adam was having all these problems, one after another, that would undoubtedly extend their stay further.

It wasn't until late Monday morning, after a clinic visit, bloods and a top up of platelets that the decision was taken to make the trip home. It was relatively uneventful; Delta employees met Alison off the bus from car rental and escorted her through to check-in. Quite simply, without their help, there is no way she would have been able to transport four suitcases and a 9-year-old child confined to a pushchair herself. It's a fair walk from the shuttle bus drop-off outside the terminal building to the departure hall two floors up.

Getting through security was 'interesting' (or in Alison's actual words -- a right palaver). Adam was unable to get out so had to be wheeled through in his buggy. Alison had to pat down said buggy everywhere with her hands and then have them scanned to detect for traces of banned substances; drugs? explosives? It took four security guards to ensure the pair of them were no threat to national security.

Adam slept for the entire flight home, and he was even more wiped out when he got home. His sleep pattern was all over the place; he went to bed at 7:30pm, woke at 2am and spent the next 5 hours watching TV downstairs. He wasn't eating and what weight we had got back on him before he flew out to America had fallen off again, and more besides. A few days on and things are now back on more of an even keel. On Friday he slept until past midday, and ate a little lunch and tea. Things are slowly improving in the sleeping and eating department -- last night was his first proper full night's sleep since getting home. He's been playing XBox with Jake, that's always a sign he's feeling a bit brighter.

We've started on the tweaked treatment regime, and on Wednesday he went up to the Royal Marsden to get his weekly shot of chemo. He's been having intermittent abdominal pain, that started quite low down and has moved further up his right side. Alison took a urine sample to the hospital on Wednesday, and it came back positive for infection (coliforms), but he's not really displaying any of the usual symptoms, and the sample was otherwise clear; in particular they would have expected to see white blood cells if it was a urine infection rather than a contaminated sample. So we did two repeat urine samples on Friday, and then two more on Saturday after the hospital lost the ones we did on Friday. And now we await to see what they show, we should have a result within 48 hours.

Scans ...

Dear All,

Adam and Alison are due to fly home on Monday after a fairly successful week in Grand Rapids. It would have been sooner except for the fact their tickets came with a clause that return within 7 days carried a hefty penalty fare. Not that either or us had studied the Terms & Conditions. Not to worry, a day or two is neither here nor there in the bigger scheme of things.

Scans are predominantly stable. There is one lymph node that is reported as being slightly larger than before; it's not the biggest in absolute terms, that one has remained unchanged. Skeletal disease is stable. There are no new areas of disease. Blood and urine markers remain at the same levels as December, which for the urine is massively elevated. The most pronounced change was in bone marrow results. When we took Adam to Grand Rapids in November near certain that his disease had progressed, confirmation of this was found in his bone marrow - one sample contained 100% neuroblastoma, and the other 80% (samples are taken from the right and left side of back of the hipbone). The results from this week were 30% on both sides. Hopefully, a very good sign. I say 'hopefully' because only taking samples from two sites means it's always possible to get a result that are misrepresentative. However, looking at the pattern over time, and given there was clear improvement on samples from two disparate sites, it appears that something is working.

The upshot of these results is that we are keeping the treatment regimen broadly the same, except for a couple of changes. So far since last April when Adam first experienced widespread progression, we have never quite managed to achieve stable or better in his bone marrow and lymph nodes at the same time. That's the goal with making these changes.

Adam has a bunch of aching limbs again; it started yesterday and has worsened today. We're hoping they're just a result of him being up and about, and a lot more active over the past few days, particularly on Wednesday. In any event they've slowed him right back down today. He's also tired, having not had a full night's sleep since arriving in the Grand Rapids, and then waking this morning at 5am because of his aching legs. He did ask his Mum why he's alright at home, and gets aches as soon as he goes back to America. His powers of recall don't stretch back far enough to remember that he ached the day after getting back home last time, having walked a long way through Detroit airport.

Talking of Detroit airport, a while back I asked on here whether anybody had any connection with Delta, the only carrier that flies direct from London to Detroit. It was a bit of a shot in the dark, but I'm so glad I did it now. They have been tremendously helpful to us. This time round when Alison and Adam arrived at Detroit they were met by two employees who helped transfer them, and all their luggage, right through the airport and on to the shuttle bus to car rental. So a big thank you to Delta Airlines! And a big thank you to whomever first put them in touch with Adam's Appeal!

I must also (again) thank people who raised money for Adam's Appeal, and the NB Alliance for supporting us. Without the support of everybody who donated, collected, bag-packed, baked, walked, ran, hopped (our first fundraiser the bunny-hop at WFIS!), sang, and a multitude of other things besides, we would be in a even more difficult situation right now.

Finally, whilst I'm on this thank you spree, I have to thank Dr Sholler and the team at Helen De Vos for taking Adam into their care, and looking after him. Dr Sholler has an incredible dedication to seeking out, and developing, better treatments for children with neuroblastoma. She undoubtedly has her detractors amongst the wider neuroblastoma medical community; she ruffles feathers. But there isn't anybody else I'd rather have in Adam's corner right now.

Oh, and here's something from the archives … a photo of my kids handing out stickers at that first fundraiser back in March 2010!

Best Wishes,
Nick

Briefly … Again ...

Am aware I haven't updated in some time. Have thought about it a few times, but not had sufficient impetus to actually follow through and compose an update. First things first, Adam is doing quite well at the moment. Which isn't to say everything is rosy and plain sailing. All things are relative, and never more so than when your child has Cancer. Tomorrow will be the twentieth consecutive day that he'll have had his abscess/surgical wound repacked and redressed. Aquacel twirled and pushed as deep as possible into the cavity with the aid of plastic forceps isn't anybody's idea of fun. The purpose by the way, as I didn't have a clue until I was told, is for the wound to drain completely and heal from the inside out. Today was the first time he's managed it without the aid of Entonox. It is healing, and even to my very untrained eyes it looks so much better than it did even this time last week. And he's so much more comfortable too, even able to sit up properly when he feels so inclined.

He's also up and about more these days, definitely more mobile, and willingly so. Eating has improved tremendously in the last week; he's still way down on where he was before in terms of weight, but these past few days we've actually started to go back up a little. Only time will tell how far we can get until something crops up to set him back again, as that's been the recurring problem of the last 3+ months. At the moment though we're just taking things one day at a time and enjoying seeing a little bit of the old Adam coming back; funny, cheeky, and generally abusive (in a good natured way) towards his Dad. He's been spending a fair amount of time on XBox Live with his partner in crime Ryan, and that's always good to see too.

On another positive note Adam hasn't experienced any pain at all since returning home just before Christmas. His blood counts are weak though, a combination of the amount of disease in his bone marrow, the effects of a long history of treatment, and the continuous therapy he's on now. His neutrophil count had been holding steady at around 2 over the past fortnight, almost certainly as his body attempted to ward off infections around the open wound on his bottom. However, on Monday it fell very low to just 0.3, and so we've started GCSF injections to try and stimulate his body to keep producing those white blood cells.

On Sunday Alison and Adam head back to Grand Rapids to see Dr Sholler, undergo bone marrow biopsies and get a PET/CT scan done. The results of these will determine where we go next in terms of treatment, and whether or not Adam is in for another lengthy stay in the U.S. Our fingers are crossed, but we take nothing for granted. He's looking and feeling better and that in itself is great … but it doesn't actually mean anything in respect of what next weeks investigations might show.

Briefly ...

Just a quick update to say Adam is slowly recovering from the abscess surgery. He has the open wound repacked and dressed daily with the aid of entonox to manage the pain that this brings. Today we took delivery of a cylinder at home, courtesy of our wonderful community nurses who have been on the case for the past few days; so now Monday to Friday he can be seen to at home. The healing process is likely to continue for some weeks yet, and each time he empties his bowels the packing is forced out, the wound soiled and he must be bathed, cleaned and re-dressed. His course of oral antibiotics finishes this weekend.

On Monday Alison took him to the Royal Marsden for IV Zoledronic Acid and Vinblastine, which forms part of his current treatment regimen. He's not been doing much, but has managed XBox and this morning had a little game of Monopoly with Jake. Eating continues to be a big problem, and hard work for Alison and I. And he needs to start becoming a little more active now the residual pain from the abscess and wound is receding; again it's our job to push him into getting up and about a little more each day. It's been much the same for the past three months, but no sooner do we make some progress than something else crops us to knock Adam right back down again.