Monday, 20 December 2010

A Happy Christmas … we hope …

Adam’s latest blood results were on the up but still not sufficiently high to seriously consider pushing for any more treatment before his next MIBG therapy at the start of January. These gaps in treatment have always been a concern to me and to be honest since July Adam has only had a five day course of oral temozolomide and a 3-hour infusion of cyclophosphamide. It’s hardly intensive stuff. Of course he also had his first MIBG therapy at the end of September but I am never sure how long lasting inside the body MIBG is. I also have to keep in mind that Adam has had a lot of chemotherapy; (literally) a lifetime’s worth of sub-lethal doses of some of the most poisonous drugs modern medicine has to offer. Much of it has done very little other than destroy healthy cells and cause collateral damage to some of Adam’s vital organs. How much of it has done more harm than good? We’ll never know the answer to that. However, I am entirely convinced that there have been occasions when Adam has been having treatment that has made me feel better because he is having treatment, but that has done absolutely nothing whatsoever to combat his cancer.

So now we’re just hoping Adam stays well over the coming weeks and has the best Christmas ever here at home with his family. No doubt we’ll spoil the kids as we usually do, the difference now is that I don’t even care in the slightest.

We’re due back on the treatment bus on January 5th now. Our schedule for UCH has been put back by one day so they can ensure delivery of the radioactive isotope. I say ‘ensure’. It comes over from Germany I believe the day before it’s administered so there is always the possibility that if the severe weather over UK and Europe continues into the New Year it could end up delaying things still further. That’s for another year though, we’ll cross that bridge if we get to it.

For now all that remains is to thank everybody for following Adam’s story, and for supporting Adam’s Appeal during 2010. Believe me when I say it has brought us much more than just financial assistance.

Wishing you all a very Merry Christmas and a Happy New Year. x

Adam's Appeal Xmas

Tuesday, 14 December 2010

The Countdown to Christmas Has Begun …

So it looks like Adam will be having an uninterrupted run between now and Christmas. His blood counts on Friday were not great on the platelet front and the thinking is now that we’ll let him recover from the cyclophosphamide and stem cell harvest before we go into MIBG therapy at the start of January. The centrifuge that separates the components of the blood during the harvesting procedure is particularly destructive on platelets, and his count supressed by chemo wasn’t that high to begin with. We are getting his bloods redone tomorrow so we can see how things are progressing, but actually UCH is only 3 weeks away now so there isn’t really time now to do anything before then. However, I know better than to make a completely definitive statement to that effect. I’ve learnt it’s best to keep the language on here littered with a liberal dose of ‘probably’ and ‘looks like’ and ‘really’ and ‘in all likelihood’.

Today was Alison’s 40th birthday and it’s been a really good day. Not the birthday that we once thought it would be; but we’re not the first couple whose long standing plan of going away somewhere special for a something-zero birthday never materialised. Maybe one day. For now it was enough that we were all home together and able to enjoy the day as a family.

This morning Alison and her parents took Adam to see Santa at one of the local garden centres that has built up something of a reputation for putting together a good festive display. Adam returned in a brilliant mood. “It was SO good” he told me before showing me the collection of Christmas decorations that he charmed/hassled his Mum into buying him whilst he was there.


At the moment Adam is eating well and we are continuing with the supplementation and daily routine that we hope will strengthen his body and boost his ability to fight this disease from within.

Now we’ve got Alison’s birthday out of the way we can focus our attention towards Christmas; hoping everybody stays fit and well so we are able make the most of that precious family time too. We intend to enjoy these next three weeks as much as possible, knowing as we do that 2011 is going to be a tough year with treatment until at least September, and most probably beyond.

Friday, 10 December 2010

Stories From The Archives – Part Two …

When I launched Adam’s Appeal I had absolutely no idea what I was going to do to try and make it successful. I didn’t have a master plan, I didn’t really have any plan at all. I knew I needed a decent website and thought I could also benefit from having a presence on the social networking sites. Beyond that? There wasn’t a beyond that.

My very first idea, and not a very original one I’m sure, was that maybe I could enlist Chelsea FC to help raise some publicity and awareness. Their training complex is not that far away down in Surrey and John Terry used to live in Epsom and had quite recently visited the Junior school attended by Jake and Jessica. I figured it couldn’t hurt to ask so I sent an enquiry via the club’s website and got a response back giving me an address to which I needed to write. I sat down and wrote a letter explaining a little of Adam’s illness and why we were having to launch an appeal. I never asked them for money; I asked them if there was any way in which they could help raise awareness for the appeal launch and specifically whether they could pass a copy of the letter to club captain John Terry, for the reasons aforementioned above.

A couple of weeks later I received a reply to my letter. It said they could not support us as they only dealt exclusively with their nominated charities and would therefore not be donating any money but wished me well. It was a bog standard bog off. Completely impersonal and clearly not addressing the specific requests in my letter. Money? I didn’t even ask them to donate a penny. I actually felt a little hurt at the time, though since I have come to realise that they must get literally hundreds of begging letters each and every day. Not that mine was a begging letter I hasten to add!

It wasn’t a very auspicious start.

When I was putting together stuff for the website I came across the letter and decided that with one or two edits it would be suitable to make available for download. I thought if anybody wanted to use it to send to other organisations or individuals then it would make their task easier. So up it went and I thought no more about it.

A couple of months later an email came in to say that a particular charitable trust had donated £5,000 towards the appeal. When I asked how they had heard about Adam, I found out it was the result of a letter sent by a former employee of a company related to the trust. This person has been talking about the appeal at a social gathering one evening and the suggestion was made that she should write to the trust to see if they could do anything to help. Consequently she downloaded the letter from the website and sent it to them.

A couple of weeks after sending the letter she received an envelope through her letterbox which contained a cheque for £5,000, leaving her feeling extremely pleased with what she had achieved. It may not have taken her very long to do, or required a large amount of effort, but if she had decided it wasn’t worth following up and had instead done nothing we would never have received a single penny of that money.

It’s just another example of how things happen in ways one could never foresee – and for every knock back there just might be an unexpected pleasant surprise waiting round the corner.

I didn’t feel so bad about the few quid it cost me to send that letter special delivery to Chelsea after I heard this story … it turned out to be a fantastic investment after all.

Thursday, 9 December 2010

Stories From The Archives – Part One …

Every now and again somebody asks me about that donation. I’m referring of course to the £100,000 that was given to the appeal back at the start of May, transforming it from doing very well to doing phenomenally. At the time it was decided that we would simply refer to it publically as an anonymous donation; in the sense that the benefactor was, and still is, a complete stranger to us it was anonymous. However, there is a little more to the story than that and now the season of goodwill is almost upon us I’ve decided to share some more details on here about it. Mainly because it demonstrates that there are people in this land who are capable of spontaneous acts of amazing generosity without wanting or needing anything in return. People who do things not for the want of recognition or adulation, but simply because they have the means to so, and they hope it will make a positive difference.

It was Thursday May 6th. The week before we’d received the latest set of Adam’s scan results and were told that for the first time there had been no improvement at all from two months ago. Adam then developed cellulitis and was put on daily antibiotics to deal with it before we could start a different type of chemotherapy. It wasn’t the best of times.

I was at home looking after Jake and Jessica on this particular day, I can’t remember exactly why (clearly I was looking after them because they are my children, what I mean is I don’t know where Alison and Adam were). I was on twitter trying to get Ruth Lorenzo (who was possibly going to come and sing at Adam’s Appeal Ball) to re-tweet  one of my messages. At the same time I was preparing to update the website and announce with a big fanfare that the total raised had reached £100,000. I was in a hurry as I had to take Jake to football training which started at 6 o’clock.

A new email notification appeared on my screen. I took a cursory look at it then quickly returned to the other stuff I was doing online. The email, as I read it, said that the owner of a metals trading firm had authorised the payment of £100.00 towards the Adam Bird Appeal and the money had been transferred accordingly. My initial thoughts I can tell you were ‘that’s nice’  and ‘i don’t recognise the name of the company’. Here is the actual email. I have removed names for one simple reason, from that day to this day the owner of the company in question has no desire for it to be in public domain.

To: <>
Dear Sir,
As requested by the owner of xxxxxxxxxxxxxxxxxx, we have today
transferred £100,000 towards the Adam Bird appeal.
We hope that this goes some way to assisting in obtaining successful
treatment for Adam.
Proof of payment is attached.  Please advise should you have any
problems receiving these funds.
Best Regards
For and on behalf of

You can no doubt spot my mistake, but I was in a rush and I didn’t read it properly!

I only discovered my error when Debbie who manages the appeal called me up and asked me if I’d seen the email. She sounded a little excited but I had no idea why – I assumed it was a completely different email to which she was referring. The conversation went something like this:-

“Have you seen the email?”

“The one about Ruth Lorenzo? Yes, I’m just trying to message her on twitter as we speak.”

“No not that one, the one about the donation.”

“Oh that one. Yes I saw that”. As cool as the proverbial I was, I still had no inkling at this point. “I have no idea who’s behind it.”

“Did you see the amount?”

"Yes. One hundred pounds.”

"I don’t think so… you need to take another look at it.”

Honestly, I’ve not made any of this up. When I first looked fleetingly at the email what I thought I saw was one, zero, zero, dot, zero, zero. When I looked properly this time what I actually saw was one, zero, zero, COMMA,, zero, zero, ZERO.

Oh my goodness (or words to that effect). Is that for real? Does it really say one hundred thousand pounds? Is is genuine? It looks genuine. How can we find out for sure that it’s genuine? I opened the proof of payment and it looked … well … like a proof of payment. I suppose my reaction was one of amazement and disbelief, coupled with the thought that I ought not to get too carried away until we were entirely certain of it’s validity.

Now I’ve got Jake nagging in my ear. Damn, it’s 6 o’clock. I should have left to take him to football training 10 minutes ago. It was surreal. I remember when I got there telling his coach “I think somebody has just donated a hundred grand to the appeal, but I’m not quite 100% sure yet.”

I called one of the trustees of 2 Simple Trust and explained to him what had just happened. He in turn contacted the bank. It was outside working hours, they wouldn’t be able to confirm receipt of the funds until the following morning! So that was that, we just had to wait. I was 99% sure that it was exactly what it appeared to be, but I don’t think I would have been human if there wasn’t a nagging doubt in the back of mind.

On Friday morning I received a message from the same  trustee to say the bank had confirmed a payment of one hundred thousand pounds had been made into the account and everything was in order. Unbelievable. Just unbelievable. You hear in the newspapers about this high profile figure, or that wealthy celebrity, making large donations to various charitable causes and it’s one of the things that occasionally I had thought about. Maybe if I can get this person to talk to that person who knows  that mega-rich famous person then… but this donation came out of absolutely nowhere, not from anybody rich and famous, nor from anybody wanting anything in return – not even as far as I could tell a thank you. They just wanted to help, pure and simple.

So much for my plans for the big announcement that we’d reached one hundred thousand pounds! Suddenly the total had doubled overnight, and I think at that point everybody really believed that if pushed on we’d certainly reach our target and beyond.

I must confess that at the actual time we received the donation we were not actually that excited about it. It was amazing and unbelievable yes, but we weren’t ecstatic or filled with glee. What you have to remember, and what is difficult (impossible?) for people to truly grasp unless they’ve have been in our situation is this. Adam is suffering from an aggressive, life-threatening illness. We’ve just been told that the last two months of treatment haven’t worked and he is no longer showing any positive response on his diagnostic scans. And on top of that he has a lump which the doctors think might be cellulitis and are treating accordingly. But they’re not sure what it is. And they’re not sure how long it will take to clear up. And until it’s resolved Adam can’t have any more chemotherapeutic drugs for his cancer. So right then, in that moment, we were at a low ebb that no amount of money was going to pull us out of. But not doing cartwheels is not the same as ingratitude. We were, still are, and always will be, deeply grateful. But I’d be lying if I said I didn’t have to put on a happy face once or twice when asked about it, for fear of appearing like an ungrateful (excuse my language) bastard.

Sometime later I did find out a little more about how the donation came about, not least because I wanted the opportunity to send a thank you to the person ultimately responsible for it. It transpires that it all began with an email - sent by somebody, related to somebody, who had a connection with Jake, my eldest son and Adam’s brother, seven years ago. At around the same time I put a video online of Adam running out with the West Bromwich Albion team. Somewhere in London a metals trader who I will most probably never meet or even speak to face-to-face saw that video and made up their mind about what they wanted to do.

And that ladies and gentlemen is how Adam’s Appeal came to be the beneficiary of it’s largest single donation.

Wednesday, 8 December 2010

In the snow …

For those of you who don’t follow Adam on facebook here are the photos of Adam out in the snow on Tuesday and Wednesday of last week.

The facebook group is in case anybody is interested. I don’t think you need to be a facebook user to see the group, so bookmark it now!

facebook_photo_download_2502931022550511328 facebook_photo_download_2502931022550511342facebook_photo_download_2502931022550511330  facebook_photo_download_2502931022550511333 facebook_photo_download_2502931022550511334   facebook_photo_download_2502931022550517556 facebook_photo_download_2502931022550517557 facebook_photo_download_2502931022550517558

They’re like London buses …

Now I’m betting there’s at least one person out there in this virtual world in which we communicate that is wondering why I didn’t write anything for two weeks and now I’ve posted three times in as many days. The reason is very simple and has very little to do with cancer. I’ve been playing around with different external blog editors to see which I find easiest to use, it’s something I should have done a long time ago!

So that this isn’t an entirely bogus update, one artificially crafted for technical pursuits rather to inform my readership (steady!) of Adam’s progress, I do actually have something meaningful to tell you as well.

The current plan (subject to change on past experience) is that we will be taking Adam back up to UCH in London for another round of 131I-MIBG internal radiation therapy on Tuesday 4th January. Which, of course, means that Adam will be at home over Christmas without any restrictions and (as long as he remains well) able to participate in the festivities. We don’t yet know if there are plans to give him any further holding chemo between now and then, that is something I need to discuss with the hospital this week. The one infusion of Cyclophosphamide is the only stuff he’s had since August and his previous MIBG therapy was at the end of September. By the time he has the next one it’ll have been 5 weeks since the chemo, and more than 3 months since MIBG.

After MIBG the current plan (subject to change on past experience) is to go into high-dose chemotherapy with stem cell transplant within the month i.e. sometime in January. That will be a 4-8 weeks inpatient stay at The Royal Marsden. With yet another MIBG and radiotherapy to follow the likely date for immunotherapy looks to be around April now. But it’s all subject to change. Always.

At the moment the only place Adam can receive immunotherapy is in Greifswald in the former East Germany. This is ch14.18 antibody given with the cytokine IL2 (to rev up the immune system) as a continuous infusion. It’s not the same as the U.S. treatment that has proven efficacy and that we initially started to fundraise for (ch14.18 + IL2 + GM-CSF). Adam’s slow progress has meant he no longer qualifies for the U.S. trial. I am going to over-simplify the reason why, but most fundamentally it’s because if they gave the treatment to every child they would run out of supplies faster than a new batch could be manufactured. So instead they hold it back and give it just to children who meet the entry criteria of the original clinical trial on which the efficacy was proven. It might (or might not) work just as well for Adam, but it’s not been proved yet. Even children in the United States don’t get it at the moment if they fall into the same category as Adam…

The current European (SIOPEN) immunotherapy trial that was hastily introduced at the end of last year (and of which the UK is a participant) has the same entry criteria as America – specifically it’s only open to children who reach high-dose within 9 months of diagnosis – which is why Adam doesn’t qualify for any treatment here. I can tell you that as far as I’ve been told that number has absolutely no medical significance. It’s purely there so that the sample set have a certain homogeneous nature in order to preserve the statistical significance of the trial outcomes. The UK trial also randomizes children to either ch14.18 + IL2 of ch14.18 alone. This has been a significant bone of contention with informed parents, as a previous study undertaken in Germany some years ago concluded that ch14.18 given alone did not result in improved outcomes. However, years later after the study had been closed researchers went back and looked at the data retrospectively and then decided the initial findings were flawed and there was a benefit! So part of the current EU/UK trial is going back over old ground inadequately covered by the Germans years ago. Now I’m quite certain I’ve over-simplified – I’m a humble layperson not a doctor or researcher; but whichever way you look at it things have turned out quite unsatisfactorily. I refuse to believe it’s actually the case, but sometimes it does feel like these children are first and foremost viewed as trial subjects rather than sons and daughters, brothers and sisters. The outcomes of these clinical trials might benefit the next generation of children diagnosed with Neuroblastoma, but what parent would want that to be at the expense of their own child? In the modern era of information sharing, internet and email I foresee more and more difficult questions being asked of doctors, researchers and policy makers alike.

Anyway, back to the (current) German trial. It is hoped that it will be at least as effective as the U.S. treatment, but with fewer and less sever side-effects. However, it’s still bad. Very bad. Pain controlled with intravenous morphine, hives, capillary leak syndrome, fluid retention, renal failure. And that’s by no means an exhaustive list. The cost is in the region of £70,000 which is considerably less than the U.S., but that’s the part I care about least to be honest.

On the horizon there should be (at least) two new trials opening up in the coming months that might offer us different immunotherapy options for Adam. It all depends on the exact timings, both of the trials opening and of Adam’s treatment. In the first half of 2011 a second European trial is planned in which the UK will be participating. Other than the fact it will be open to all children, including those excluded from the initial trial I have no further information at the moment. At the same time a new trial in US is hopefully going to be opening for enrolment which administers the ch14.18 antibody with a different immune system booster that’s it’s believed will both enhance the effectiveness of the antibody treatment and simultaneously reduce toxicity.

There is so much about having a child with Neuroblastoma that I could not have envisaged for one second when Adam was diagnosed. In the early days it was all too much and we just ‘went with the flow’ and that’s really how I’d always perceived things to be when somebody got seriously ill. Somebody (and you know who you are) told me very early on that they had read Lance Amstrong’s book and when he was diagnosed with cancer he made it his business to find out as much as he possibly could about his disease, and the influence that he could have over his own destiny. In some ways I wish I’d started to get educated a lot sooner than I did, but I guess I just wasn’t ready at the time. Don’t get me wrong there are still huge gaps in my knowledge but at least I know who to speak to, and for the most part what to ask.

Time to sign-off. I need to find out what is happening (if anything) with Adam between now and MIBG therapy in January, and then try to learn more about the new antibody trials in UK and U.S. Oh and I need to do some shopping. Alison will be quietly turning 40 years of age next Monday. I must remember to get her a card. One of the (many) challenges of having a child like Adam is to try and stop the rest of your life passing you by… because if you’re not careful that’s precisely what starts to happen.

And by the way, Windows Live Writer was the external blog editor of choice for this post; for any of you technically minded people that might be vaguely interested. Despite instinctively hating all things Microsoft it’s actually quite good. I’ll probably use it again… in a couple of weeks time.

Tuesday, 7 December 2010

The Harvest Is In ...

We took Adam into hospital late afternoon on Sunday in preparation for stem cell collection this week. During the evening he had pre-hydration in order to pump up those veins before vascath insertion the following day. His blood counts on admission were, quite simply, rubbish. Despite a full week of GCSF his white blood count was snubbing its nose at the nurses who had braved the awful weather conditions to get out to us and administer Adam's daily infusions. They were so poor in fact, that surgery was delayed on Monday pending a repeat set of blood results.

The first I heard of all this was a text from Alison on Monday morning saying 'blood results not good. Might not go ahead'. I suddenly thought to myself that we should've been prepared for this eventuality and we were not. We hadn't sat down and asked what happens now. Adam's white cell counts have always taken longer to recover than his platelets - which had themselves now begun to climb again after the chemotherapy. Why did we suppose that this time it would be any different? Had we seriously believed that Adam would simply respond to the priming in the manner required for it to be successful? How stupid were we?

I then got to wondering and worrying about what would happen next. The hospital had squeezed Adam into an already full transplant programme. The harvest had been delayed twice before; once because Adam hadn't yet recovered sufficiently from MIBG therapy, and the second time because the hospital were 'fully booked'. The machine used for the harvest itself belongs to, and is borrowed from, the adult unit. Were we going to hit problems and then find out that we'd missed our slot? How come I was asking these questions now when I should have asked them weeks ago. It wasn't that I was getting worked up about what the situation itself. Perhaps there was nothing to worry about. Perhaps this possibility had been factored in and the hospital could accommodate a delay of a day or two. I was annoyed with myself that I hadn't second guessed this would happen back when I could have tried to do something to ensure there was a Plan 'B'.

As I sat pondering what I would do if they told Alison it was no good and she'd have to take Adam home I received another text message. 'He's in. Going ahead today'. Huh? What? It transpired that overnight Adam's blood count had risen sufficiently (I think from zero point something to over six) for them to crack on with the original plan. I knew there was a reason I'd never bothered to think about what happened if things got delayed...

Not that I am a naturally suspicious person (I don't think so anyway) but it did fleetingly cross my mind that perhaps they were going ahead because they couldn't accommodate a wait-and-see approach, and therefore the only other option would've been to send Adam home. I know, I'm a crazy fool. I have to confess, my world does get a little paranoid at times.

By the time I arrived at the hospital Adam was awake from the general anaesthetic. Emotional. Angry. Moaning about the baby opposite who 'screamed all night long and didn't shut up and kept waking me up and I couldn't get back to sleep again.' On the plus side he didn't throw anything or try to punch anybody, specifically me. All-in-all not a bad result then I guess.

The harvest itself was uneventful and unremarkable. I had to make a quick dash for the commode at one point when Adam announced 'I need the toilet. It's a poo. BE QUICK, I NEED IT NOW.' There is no dignity in circumstances such as these. However, do spare a moment for the nurse who had to reset the machine next to Adam whilst he was in full flow. He was oblivious - too busy craning his head round so he could watch something on TV at the same time.

This morning we learnt that Monday's harvested yielded 1.1 million cells. The whole process was repeated today and yielded a further 0.9 million. Having achieved the objective of acquiring enough cells for two clear transplant procedures, Adam came home this evening. No point in doing a third day - diminishing returns and we've done what we set out to do. I said 3 x 2 was better than 2 x 2 didn't I? Having gone through an enormous amount to achieve the number of cells that we have, nothing would give me greater pleasure than to only ever have to use half of them ... the rest, as our consultant keeps putting it, 'will be for a rainy day'.

Stem Cell the Third

Adam’s latest chemotherapy was an odd affair. For the first time ever (literally) he had a severe adverse reaction which manifested itself in him spending the early hours of Sunday morning throwing up at regular (short) intervals. It began, according to Adam, when he got up too quickly out of bed to use the toilet and that made him feel sick. What’s beyond doubt is that it didn’t stop until well into Sunday.

I use the word ‘odd’ because we have seen Adam go through eighteen rounds of chemotherapy before this one. On a rough calculation that equates to around 90 days of chemotherapy, or on average 1 day out of every 5 since he was diagnosed last July. I could prattle on some more – I’ve got Microsoft Excel open alongside this – but (hopefully) you get the point I’m trying to make. He’s had a lot of chemo. So I guess we’d got a little blasé about it, or as blasé as you can about poisoning your own child. We’d even discussed and seriously considered the idea of taking him from hospital to Birmingham for his cousin’s 18th birthday party, though we eventually decided against it. Stupid bloody parents.

Apparently it wasn’t the first time he’d had cyclophosphamide, news that came as a surprise to both of us as it certainly didn’t ring any bells., He’d has it twice before as part of the induction therapy cocktail of drugs that were given between Day 0 and Day 80 (protocol speak). But those early days (even though that’s a three month period) were, are, and forever will be a complete blur. A whirlwind. Living on the emotional edge. Three days of chemotherapy, seven days off (or rather in Epsom General with fever, constipation, and general malaise). And repeat. Day 0, Day 10, etc. mark the start of the next cycle. Day 40 is half-way scans and Day 80 is end of induction therapy with more detailed scans (and in our case the devastating news that Adam still had lots of disease).

The biggest problem with Adam being sick wasn’t so much the vomiting itself. He doesn’t make too much of a song and dance about it (as opposed to his sister who HATES being sick and fights it as long and hard as she possibly can before the inevitable happens). The biggest problem was that it completely trashed his appetite and the remainder of the week was a slow and gradual climb back up from eating nothing to almost full portions again.

Despite the eating problem Adam was determined not to miss out on the chance to enjoy the wintry weather. On Tuesday when the snow came down hard he told me he was going to go outside once it had stopped “because then there’ll be the biggest amount to play with". In truth I thought he said it because he wanted to go out but at the same time didn’t really feel up to it. I should have known better than to doubt him. As darkness descended he donned his hat, gloves, coat and wellie boots and out he went. Adam’s always had an amusing style when it comes to outdoor play, whether it be sand, sea or snow. And so, despite spending the previous 48 hours alternating between his bed and the sofa, he sat in the snow, he knelt in the snow, at one point he even stuck his bloody head in the snow as if shaping to do a headstand! I did think he took things a little too far, however, when he pushed his Dad over and covered him with freezing cold snow. In the ears and up the nose, not a good combination.

On the Monday after chemo Adam began a week long course of IV GCSF to stimulate his bone marrow in preparation for stem cell collection. Which on Monday wasn’t much of a big deal; our community nurse came, did the infusion, and went on her way again. Tuesday was a little more problematic but the infusion was in the morning and at that time although the snow was coming down quite heavily it still wasn’t as bad as it was going to get. Our nurse lives in Sussex and having returned to the hospital after visiting us she left for home at 2pm and arrived back at 10pm. One of many with similar stories I’m sure. Somehow the team managed to get through to us every day. There was no way they weren’t going to – no matter how much walking was involved. We’re incredibly grateful and lucky to have such a wonderful team of nurses who look after Adam when he’s at home, and last week only served to reinforce that.

On Sunday we took Adam into the Marsden to prepare for the third stem cell collection. To recap the previous two had yielded just over 4 million cells. Whilst this is plenty for transplant after high-dose treatment, the ideal number to return is around the 3 million, leaving precious little remaining should more be required at a later date. The expectation is that despite more MIBG, high-dose and antibody therapy Adam will emerge late next year still carrying a disease burden of some magnitude. Without stem cells treatment options become ever more limited. I was never comfortable having only 1 million left over, or splitting them into 2 x 2 and going through transplant with the bare minimum. So after some pestering of discussion with the doctors we agreed to attempt stem cell harvest numéro trois. There isn’t a magic number that we need, and we know from experience and blood counts that we’re never going to get an abundant supply. But 3 x 2 is much better than 2 x 2.

Thursday, 25 November 2010


As the weather turns colder and the festive season draws nearer I've found myself reflecting on the past twelve months.

This time last year we were between cycles of TVD. In total Adam had six cycles of this most hideous of chemotherapy cocktails, and it did very little for him except cause some irreversible heart damage.

I sometimes wonder why he stayed on it for so long, and although I think I know the answer I'd rather believe I'm wrong and it was something else. For although Adam's disease did not respond, it didn't progress either. And so 'stable' is deemed to be a positive response in itself, even though nobody could predict whether this would have been the case without anything at all. If you add to this the fact that the next drug combination on the list requires pre-approval and funding by the PCT, therein lies my answer.

Twelve months ago I was much less cynical, or much more naive, depending how you look at it. I do know I was pushing really hard for each and every cycle, querying any delays and questioning decisions that I didn't like. The longer Adam went without chemo the more I thought we would wake up one day to find him once again in agony. Agony that would almost inevitably signal the beginning of the end. This time last year I was desperate that we would arrange things so that Adam could spend Christmas at home. The reason was simply this; I honestly thought it would be his last. Believe me, it's a horrible place to be mentally.

As it turned out we brought Adam home late afternoon on Christmas Eve. He managed as best he could to enjoy Christmas and Boxing Day, before the effects of the chemotherapy kicked in and we took him up to Epsom General where he spent what remained of 2009.

It wasn't until February/March of this year when it really began to dawn on us that the chemotherapy wasn't having any material effect on Adam's disease and his path was not going to be one that followed that of the other children whose stories we'd come to know. We'd put off launching an appeal, telling ourselves we'd do it once Adam got through the first stage of treatment. By the time we'd completed six months of TVD we realised we needed to act, to ensure that when the time came, and wherever Adam's treatment needed to take us, we would have the money to do what we believed was best.

We will never be able to properly express our thanks to all of those people, to all of you, who
have raised such an enormous amount of money. I could literally spend the next hour reeling off names of people and organisations that have held events, raffles, quiz nights, collections, sponsored events, or made individual donations to the appeal. The list goes on and on. People are still getting in touch, wanting to help and to raise money for the appeal and we are just extremely grateful for every penny that has been, and continues to be, raised.

I sometimes wonder how people perceive us. Given that I have a child with a life-threatening illness I really shouldn't care, and yet I do (I think it all comes back to that question of it being impossible to express our gratitude, the whole thing is just too big). We launched the appeal with a huge fanfare in March, did tremendously well - exceeded every expectation I ever had - and then since the summer holidays we've kind of crawled back under the shell from whence we came, coming out occasionally to post things on Facebook or on here. The only thing I can say is this; when we started the appeal somebody said to me about getting the money raised quickly so I could go back to being a full-time Dad. At the time I kind of dismissed it, I was on a mission, spending hours and hours doing the appeal stuff, staying on top of everything. And then we reached the milestone of £300,000, and the summer holidays came, and almost without knowing it I stopped wanting to push to raise more and more money. Instead I wanted to go away with kids, and spend the time doing mundane, normal, everyday things. I think back to what that person said to me and realised she was right. First and foremost I needed to go back to just being Dad.

One thing I don't do any longer is worry about money. I used to. I used to wonder about using the house to pay for treatment abroad. And then what happens if that's not enough, if after the best options, or indeed only options, are abroad. This disease of Adam's is like that. You can reach the end of the road in the UK and there are possibilities in America that offer real hope still. I am talking about a major commitment and having to live there for as long as it takes. If you go for treatment at Memorial Sloan Kettering (MSK) they require an upfront deposit of $350,000 before they start treatment. If the disease spreads to the brain, MSK are the only place with any proven treatment, one that can still offer the possibility of a cure. Not just a few extra months, but a treatment designed to completely eradicate the cancer. Of course it comes at a price, something in the region of $1,000,000. I used to worry about all this stuff. Not just 'what if it happens?', but 'what if there is absolutely nothing we can do about it because we haven't got the money?'. There are other reasons why that might still be true; for example the hospital refuse to accept Adam as a patient, or he is unfit to travel. But the money one was always an issue for me as I thought it was something we could do something about. And that's what the appeal has done. In March, I didn't think we'd raise £300,000. Now I feel as though whatever we need to raise, whenever we need to raise it, there are people looking out for Adam who will do all they can to make it happen. Of course my greatest hope is that we are never faced with that situation.

So we approach December in a not totally dissimilar position to last year. Adam had his first ever clear bone marrow biopsy in June, and tumour surgery in September. The bulk of his metastatic disease, however, remains largely unchanged. Despite eighteen rounds of chemotherapy and high-dose internal radiation (131I-MIBG) therapy he still has widespread disease in his spine, pelvis and femurs.

On Friday and Saturday Adam will be in the Marsden for IV cyclophosphamide, both as a holding measure and to prime for a third and final stem-cell harvest. If we only get the same number of cells as the previous two harvests (~ 2 million) this will give us enough for a second transplant procedure in the future should that become necessary. If we don't do this now we will never have the opportunity to do so again unless Adam is completely cancer free. On Sunday 5th December he will go in for 3 or 4 days for the harvest itself. After that we await to hear what the plan is in terms of 2nd MIBG therapy followed by high-dose chemotherapy and transplant.

It could well be that this year Adam will be in hospital for Christmas. If he is we will just have to get on with making his Christmas, and that of his brother and sister, as good as we possibly can.


Adam's blood counts have held steady this week, and so we can go forward with the plan to have chemotherapy this weekend in preparation for stem-cell harvest the week after next.

Thursday, 18 November 2010

We knew it, we just bloody well knew it...

Adam's blood counts on Wednesday were up. Platelets at 161 and Neutrophils at 0.9. Given what we know about Adam's counts this is good enough to go forward to chemotherapy followed by stem cell harvest.


Adam can't have chemotherapy this weekend because the stem cell collection machines are booked out the week after next. Which means that although his blood counts are now good enough, we still cannot proceed.

Which means that he will now have gone two months without any treatment (since MIBG therapy). And his last chemotherapy will have been in August.

Which means we have to do it all again with his blood counts next Wednesday. And we know Adam's blood counts come with the same warning as investment products - they can go down as well as up.

Which means we will have had a delayed stem cell collection at The Royal Marsden in August because of scheduling and PCT funding, delayed tumour resection at St George's in September due to the surgeon being on holiday, delayed MIBG therapy at UCH in September due to staff shortages and now delayed chemotherapy and stem cell harvest The Royal Marsden due to availability of equipment.

None of which has anything to do with Adam, or his condition, or his treatment, or standard-of-care. For a little boy with an advanced form of one of the most aggressive cancers that's an awful lot of delays. For the parents of said little boy that's an awful lot of extra worry and anguish whilst their child isn't getting any of the treatment they know he needs.

The mystery of the missing Neutrophils...

Adam's blood counts have always been something of a mystery to me. The number of times we've waited for his Neutrophils to climb back up above 1 before being able to continue treatment. The 'magic' numbers are platelets above 100 and Neutrophils above 1. MIBG therapy supposedly has most impact on platelets and yet these recovered whilst the Neuts were still on the decline, down to 0.4 as of last Wednesday. This low count was responsible for Adam missing his planned slot for priming chemotherapy last weekend.

One could speculate that he has no immune system. His white blood cell count is just dormant. We had a complete blood work-up done on Adam in October (not on the NHS) before starting MIBG therapy. As part of this the lab performed 88 different food intolerance tests, each scored from 0 (no intolerance) to 4 (extreme intolerance). The tests are conducted by detection of an immune response to the introduction of each different food stuff. Adam scored zeros right across the board, 88 of them. Such results are extraordinarily rare. Our practitioner even asked the lab to double-check them. So maybe this lends weight to the hypothesis that Adam has no immune system. But then wouldn't we expect him to get ill more often? We don't live in a sterile bubble by any means, and yet Adam has only had one short-lived line infection since he was diagnosed last July. Bit of a sniffle now and again and a sickness bug that he caught off his sister, but only one proper infection.

So basically I just don't get it. I do know around 0.8 or 0.9 is Adam's ambient level post his induction chemotherapy. On more than one occasion I've found myself asking why 1 is good enough to have treatment, but 0.8 or 0.9 isn't, because I had little expectation that if Adam missed treatment because of such that the situation would be any different a week later. Of course, the doctors couldn't give me an answer because none of them knew. You get to realise when it's just one of those things that are documented in the protocol. An indicator that's been assigned a number by somebody somewhere, not a scientific rule. In the end I'd get the head of the unit to agree to proceed at .8 or .9. It's one of those times when knowing your child, and being able to advocate for them, makes a tangible difference. A shot of GCSF (growth factor that stimulates the bone marrow) and they'd immediately shoot up into the teens; like they were just waiting to be flushed out.

Like I said - a mystery to me.

Friday, 12 November 2010

Quick Update...

Adam remains quite well in himself and had the most brilliant birthday celebrations - more on those another day. His blood counts, or more specifically his neutrophils, remain too low for him to go forward for chemotherapy this weekend. His bloods will be checked again next Wednesday and we'll go from there.

Unfortunately nothing is ever as straight forward as it might seem. The hospital are effectively fully booked for procedures to the end of the year and Adam was being 'squeezed in' as one extra. Which was fine when the plan was for him to go in this coming weekend, things had been scheduled accordingly. But now everything will have to be shuffled around again to accommodate him. Oh well, not my problem I guess. At least not unless things get delayed because of something other than blood counts.

Thursday, 28 October 2010

Scan, scan, scan, scan. Scan, scan, scan, scan. ...

For those of you wishing to find out how Adam's doing without having to suffer my narrative style, there is a much shortened update below.

The second part of this particular update has been waiting in the wings for a while. The reason I've not published anything until now is that we met with Adam's consultant yesterday to discuss the results of his latest set of diagnostic scans. His previous scan was back at the end of June so there has been a prolonged gap between then and now. Of course there was plenty going on in said gap. Chemotherapy, two stem cell collections, tumour surgery, MIBG therapy. But no diagnostic scans.

The (MIBG) scan itself was last week. Radioactive isotope injection on Wednesday, imaging on Thursday. I tried to figure out how many of these one-hour full body scan's Adam has been through and I think the total, including the latest one, is nine. No doubt he'll be into double figures before too long. Alison and Adam arrived home from the hospital on Thursday to find a message waiting for them on the answer phone. Could Adam please go back so they could re-scan his abdomen, the images they'd just taken were blurry. I wouldn't say panic set in but it was, despite the apparently innocent explanation, a bit unnerving. This was because (1) nothing like this had ever happened before, (2) the area in question encompasses the majority of Adam's imageable disease, and (3) the scans were, as always, taken away to be spot-checked before Adam was given the okay to leave in the first place. Thankfully the return trip was uneventful and they quickly squeezed Adam's re-scan in so there wasn't any waiting around. When I asked Adam later what had happened he told me "My winkle was itchy so I had to scratch it". So there you have it, a perfectly plausible, and quite innocent, explanation. Or was it? Was there something more to it? Were we just looking for a way-out? When anything unexpected happens there's always this nagging suspicion in the back of your mind that this is it, this is bad. To fully appreciate this mentality I think you either have to be a parent of a child with this kind of life-threatening illness - or a paranoid worrywart.

Last Tuesday Adam did his usual trick of attending school just as it was about to close for the holidays. He went in first thing in the morning, got told off in assembly for talking, and ran out crying. The teacher in question didn't actually realise it was Adam who she was telling off and to be fair it was his own fault for talking when he should've been listening! He's lucky I didn't give him a clip round the ears when he got home. He stayed for the whole morning and thoroughly enjoyed himself. I took his pills in for him to have at lunchtime and he told me he was 'staying until last playtime, at least'. Shortly after I arrived back home we got a call from the school to say Adam was in the office and he'd like to come home now. Clearly his desire to stay for another playtime was outweighed by his desire not to sit through anymore lesson time. Unsurprising given how much school he's missed. His school are fantastic though, they are happy to accommodate him whenever he wants to go in, for however long or short his visits might be. It's especially nice given that his appearances often cause excitement amongst some of the other children and a bit of disruption to normal classroom activities.

The radioactive iodine used in the MIBG scans, though much weaker than that used for therapeutic purposes, has a half-life of 14 hours and so he wasn't able to go back into school after his hospital visits on Wednesday or Thursday. But mark my words, one of these days he WILL go in on two consecutive days!

With hospital visits out of the way we went to the caravan for some more fresh air, cycling and feeding of ducks. We always planned to return on Wednesday so that Adam could have weekly bloods taken and have his central-line dressing changed. On Tuesday the hospital called to say we'd been booked into Wednesday clinic and could we please make sure we attended. It's impossible not to get worried on the eve of a post-scan visit. We've stopped hoping that Adam's scans will show marked improvement; instead we now hope they do not show any marked progression or areas of new disease. We've been reconciled for some time to the fact that there's no quick way out of this for Adam, or for us. Well not one with a happy ending anyway. What we hope instead is that we're in for the long haul. At the end of which we will, finally, prevail.

After building works that have been on-going since before our first visit last July, the new children's unit at the Royal Marsden has finally opened. It won't though be fully operational until the existing building has been renovated to accommodate the daycare unit. At the moment daycare and consultation rooms occupy the ground floor of the new building, and inpatients the upper floor. In it's final configuration, once daycare have moved back out again, the inpatient ward will occupy the whole of the new building; ground floor for infants and young children, and the first floor for teenagers and adolescents.

After a quick checkup Adam went off to play leaving Alison and I to speak to his consultant. Queue rising tension. "The latest MIBG scan remains much the same as before. If anything there is some slight improvement in the femur." And relax, it's okay. It means I can give you all the information I couldn't give you before, in case the results of the scan rendered it all meaningless (plus I didn't want to tempt fate). One final thing that's worth mentioning is that these results do not mean the MIBG therapy has failed. It often takes longer than four weeks for the full effects of such treatment to become apparent. Sometimes considerably longer. His blood counts continue to drop, though not to levels that require transfusions. We're hopeful that scenario will be avoided altogether.

So, to the update that's been waiting in the wings.

Last week I had a very good discussion with Prof. Pearson, head of the children's unit at the Royal Marsden and the leading UK expert in Neuroblastoma. A very good person to have reviewing your child's treatment plans. Also a person very much in demand and with a very busy schedule. Nonetheless he's always been happy to discuss Adam with me, and has returned my calls on numerous occasions when I've felt that high-level intervention has been required.

Until now the feeling has always been that the best way to proceed has been to try and get a clear scan before going into high-dose chemotherapy and transplant. However, Prof. Pearson feels strongly that the time has come when the benefits of that approach are out-weighed by the risks that the NB cells targeted by high-dose may become resistant to treatment and eventually lead to a relapse. Going through with high-dose and the remainder of the upfront treatment now, and trying to deal with any remaining disease afterwards is, in his opinion, the right approach. Obviously I am summarising somewhat but I left feeling much more confident than when I went in. Not about what treatment would or wouldn't do for, and to, Adam. But about the whole 'plan' going forward.

Providing Adam remains at least as well as he is now clinically this is the plan. First we are going to attempt a third and final stem cell harvest. I have always been perturbed by the fact that we don't really have enough stem cells for two transplant procedures. It's borderline at best. And once Adam goes through high-dose it will be a long time before we could even contemplate another harvest. Should things take a turn for the worse, having no stem cells definitely limits the treatment options that are available. So we are going for a peripheral blood stem cell harvest and then, if that fails, a bone marrow harvest which is something the Marsden have not actually needed to do for a number of years. Adam is pencilled in for cyclophosphamide over the weekend of 13th/14th November. The exact date depends on his blood counts recovering sufficiently from the MIBG therapy. The cyclophosphamide is to prime him for the harvest as well as acting as a holding chemotherapy. It takes around 10 days for blood counts to drop and then begin to recover again - which is when the harvest is conducted. So that should be from 23rd November (harvest always begins on a Tuesday), assuming 13th/14th for priming.

After that the sequence looks like it will be; 2nd MIBG therapy, either at the Marsden or back at UCH; straight into high-dose chemotherapy and transplant; (possible) 3rd MIBG therapy; radiotherapy and then antibody/immunotherapy treatment in the former East Germany. There is a possibility that by the time Adam reaches the final stage a new antibody trial, for which he would be eligible, will have opened in the UK. As things stand, however, it's still most likely that we'll need to go to Germany. America is no longer an option (unless a new trial also opens up there) as he does not meet their entry criteria of having reached high-dose no later than 9 months after initial diagnosis.

It looks likely that Adam will not be able to escape Christmas in hospital this year. Last year we brought him home on the afternoon of Christmas Eve. This year Adam could well be in the midst of high-dose/transplant… which means he'll either be sick in the Marsden, or even sicker in the PICU at St George's. Nice. He doesn't know any of this yet. No point in telling him until possibly becomes definitely. Working on some rough timescales immunotherapy (Germany) would begin sometime in the first quarter of next year. And the treatment would be completed towards the end of next summer. At which time we'll know whether or not all the treatment has had any effect on his existing disease burden. Anyway there is a long way to go between now and then, and we'd be getting very much ahead of ourselves to even think beyond the end of this year. It's good to know and understand what might lie ahead, but the focus has to be on what comes next.

Adam turns 7 on 9th November and we've organised a party for him on the Saturday before. On Friday afternoon before school finished for half-term he took in all his invites. Fingers crossed nothing crops up to spoil it and he has a fantastic day. He deserves to. There's an even bigger treat lined up for him on his actual birthday… but that's a story for another day.

Scan, scan, scan, scan. (The Shortened Version)

Adam's MIBG scan from last week showed little change from his scan at the end of June. If anything there is some slight improvement in his femur. The plan now is for Adam to undergo a third stem cell harvest, 2nd MIBG internal radiation therapy, high-dose chemotherapy with stem cell transplant, 3rd MIBG internal radiation therapy, radiotherapy and immunotherapy in Germany. All that will take us up to the end of next summer.

Monday, 18 October 2010

Back home...

Apologies for the lack of updates... fact is there is little to update you on really. Well nothing of any great significance.

Adam had a really nice week down at the caravan with Alison whilst we waited for his radiation levels to subside. An abundance of sunshine and generally good weather helped for sure. They did lots of cycling and Adam had fun feeding the ducks and swans at least once a day. We did a quick changeover at the weekend so I spent the majority of Saturday/Sunday with him, but for the most part I was at home cooking, washing and taking care of Jake and Jessica. Whilst we wouldn't have planned such a separation by choice, all in all it worked out just fine.

On Wednesday Adam came home to allow his dressing to be changed and bloods to be taken. As expected his counts are dropping following the radiation therapy. How far they will drop, and whether they'll reach levels at which transfusions are required is something that only time will tell, but it's certainly a possibility. We had hoped to coincide the return home with a trip to the Marsden to have his levels re-checked, but for some unfathomable reason we were told that they couldn't do it and we'd have to go back to UCH. There is ridiculous and then there is ridiculous. As far as I was concerned this went beyond even that. The test goes something like this. Adam holds tape measure. Person holds meter at distance of one metre from Adam and takes reading. Person looks up reading on conversion chart and determines which band it falls into. Total time taken? About 2 minutes. Given that they undertake the same treatment at the Marsden it's not possible that they couldn't do the test. Wouldn't maybe. But couldn't, absolutely not possible.

I thought about making a big fuss, it wouldn't have been the first time. Part of me wanted to make a big fuss. However, in the end after talking about it we decided to take Adam up to UCH and at the same time collect the remainder of his things which we'd been told were no longer 'hot'. Our parking dispensation and congestion charge waivers were still valid so we drove up there the next day.

We were glad we did. "No restrictions" was the outcome of the test. Adam could come home again. He was, to put it mildly, cock-a-hoop. "I am going to go home and give Jake and Jess a big cuddle" he announced. And that's just what he did.

Fast forward to now and we're all back home, united as a family. On Thursday Adam is back at the Marsden for more scans, and tomorrow I am going to talk to them about what happens next. At the moment we are in a state of limbo. Not quite sure what the best course of action is. Not quite sure how to go forward. I suppose we are collectively holding out for a complete response to MIBG therapy, after which the way would become clear again. But that really is a very remote possibility. Only a minority of children have such a response, and most are given high-dose therapy which involves two infusions given two weeks apart and in combination with chemotherapy. Adam had the mildest form possible. He's never had a miraculous response to anything so far, I see no reason to be optimistic that he will have this time.

Neuroblastoma isn't one disease, it's many different diseases. Adam is writing his own story now. What matters most that he's still here, still fighting, still well, still smiling and enjoying each day. After 17 rounds of chemotherapy, major surgery lasting 7 hours, full-body internal radiation therapy, anti-sickness medication, steroids, blood transfusions, platelet transfusions, antibiotics, MIBG scans, CT scans, ultrasounds, bone marrow extractions, catheters, cannulas, feeding tubes, innumerable blood tests, and enough pills to last a lifetime.... he is still smiling and enjoying each day.

Friday, 8 October 2010

An observation...

I posted this photo on Facebook a couple of days ago and now I can't stop looking at it. It shows Adam this week and Adam twelve months ago. He may have had surgery to remove his main tumour, but from a medical perspective he is every bit as ill today as he was back then. In fact the prognosis for his future is considerably bleaker.

And they say the camera never lies...

Tuesday, 5 October 2010

What the ... ?

Today Adam has been the most kind, caring, loving, affectionate child you could ever wish to meet. No matter what we've asked of him there has not been so much as a murmur of dissent or discontent.

I'm not sure how long it will last, and being locked away in a 12ft square box for a week is not something I'd want any child to have to go through, least of all my own; but for whatever psychological reason his homecoming has brought out the absolute very best in him. And it's made today a day to cherish.

Tomorrow Alison and Adam head off to the coast and I get Jake and Jessica back. So I'm under no illusions; the peace and harmony won't last much longer!

UCH - MIBG Therapy

I uploaded some photos of Adam's stay at UCH. They are not particularly exciting, but then nor was his stay.

Monday, 4 October 2010

UCH - Day Seven

Today was not what we were expecting at all.

I arrived at the hospital as usual to find Adam munching his way through his breakfast. So far so normal. A quick hello and goodbye, and Alison returned to the flat to shower, change and prepare lunch. Equally unremarkable.

Not long after Alison had left a member of the Physics team came up to remeasure Adam's levels. On Friday they were 800 and something megabecquerels. In laymen's terms that's 'too high to be anywhere other than in the lead-lined isolation room'. To put things in perspective; directly after he'd been given the therapeutic dose of radioactive iodine (131I) his reading was more than 8,000. He was HOT. The decay is non-linear and we'd been showering Adam at most once a day, so I was incredibly surprised when the reading this morning came back as 225 and I was told we could go home (with restrictions of course). Home? Today? That's the last thing I expected.

Adam was happy too. He got straight on the phone to tell everybody, although his joy was tempered slightly when I told him Jake and Jessica were both at school and his news would have to wait for at least another 5 hours.

We carried on with lunch as planned and then sorted everything out during the course of the afternoon. Before we were discharged with our yellow card containing Adam's restrictions a final reading was taken of 170. This means that in a couple of days there will be no restrictions at all for adults around Adam, but he must not be in prolonged close contact with children or pregnant women. Which all works out rather well... Jake and Jessica are staying with friends for the next two nights (thank you parents of said friends). During this time Adam can be at home whilst we sort a few things out, and then he and Alison are going away to the caravan for a week. When they return we will have Adam's levels rechecked, but we anticipate that it will be at least another week before he can resume normal contact with his siblings.

Not surprisingly Adam was in terrific spirits when we finally let him leave his room.. We walked from the hospital to the flat, a journey of about 15 minutes with middle-sized legs, had some tea, packed everything up and that was that. Just before 9pm we arrived back home.

Adam's scans on Thursday showed extensive uptake throughout his bone marrow. Whilst I hate seeing or hearing that EVER, it is actually good news in the sense that it confirms that he has received a therapeutic dose in the areas that were being targeted by this treatment. In last night's post I hoped we wouldn't be at UCH much longer. Today we are home. I figure I must be on a roll, so now let's hope Adam has a complete response to the MIBG therapy.

Sunday, 3 October 2010

UCH - Day Six

Let's hope we don't have to remain at UCH for too much longer. That's not a particular reflection on the medical institution in question, it's just that I am seriously struggling to find anything to report that I haven't already written.

Adam's eating reasonably well, despite the fact that the lack of activity doesn't lend itself to developing much of an appetite. We made the right decision to rent an apartment. There is no doubt whatsoever that nutritionally Adam is a million times better off this way. We're showering him once a day to clean off the radioactive material excreted through his skin, but the water is horrible. There is a such a distinct detergent smell that comes through and I find it quite unpleasant. I have no idea what's been added to the water and I'd rather he didn't shower in it at all really, but we've compromised at once per day. It might mean an extra night (or two) but so be it.

UCH - Day Five

Well it doesn't get any more exciting that's for sure. This place is eerily quiet now the weekend has arrived. Just Adam and one other MIBG patient in isolation rooms, one nurse to look after them, and nobody else to be seen! There appears to be only one other child on the whole of the 11th floor. Seems very odd next to our experiences of St George's and The Royal Marsden, the latter of which is a constant hive of activity all day, every day.

So tonight, finally, it's my turn to sleep in the cubbyhole. Thank the lord for mobile broadband. Or in my case, O2.

The highlight of my day today has been shopping... for food. I can thoroughly recommend Waitrose beneath John Lewis on Oxford Street and Planet Organic which is on a side street off Tottenham Court Road.

Adam is a tale of two children. One is a sullen, sulky, awkward, lazy urchin who just lays on his bed watching TV programmes on the computer. He can't even be bothered to go to the bathroom to pee, preferring instead to expel his radioactive waste into the bottle next to his bed. The other is a vibrant, joyful little boy who bounces on the trampoline we brought in for him whilst bus watching, counting cranes, or pointing out landmarks like BT Tower, Wembley arch and London Zoo that he can see from his window.

As we had been warned, by far the biggest problem in here is the boredom and the confinement. Getting him to engage in something is key. We took him a cheap mobile phone in this evening and I gave his number out to various family members. It was so lovely to watch him receive calls from Jess and Jake, Grandparents, Aunts, Cousins. "Daaaaad" he said to me, "You've been telling people to call this number haven't you? If one more person calls this phone I am going to give you a good whooping." At which point the phone rang.

Both Alison and I have spent more time in his room today playing various Wii games with him, our bodies separated by the heavy lead screen that we can wheel around. It is in our company that Adam is at his most animated - not surprisingly given that he is a very sociable child who must remain isolated and alone for the majority of the day. The lead shield offers protection against the gamma radiation coming from Adam's body. Both of us would swap places with him in the blink of an eye if we could. Compared to what he's been through, and continues to go through, we will take our chances with a little bit of secondary radiation if it helps to keep him happy.

Friday, 1 October 2010

UCH - Day Four

Very little to report. It's dull up on T11 North. Adam got a bit upset when we told him that he's going to be staying for another 5 nights or so. We explained before we went that he'd be there for a week, but as far as he's concerned he's been there ages already. The novelty is well and truly starting to wear off. His levels are too high for him even to be allowed out of the hospital over the weekend. Personally I find it all slightly odd given that he was out of his room and in the general hospital population for well over an hour yesterday, but I decided against opening that particular can of worms.

I've really missed Jake and Jessica today. Might have to take a trip home at the weekend to give them a cuddle (if Jake will let me). and then turn tail and head back up to London again. We'll see.

Thursday, 30 September 2010

UCH - Day Three

Today was a tough day. Adam went down for his post administration scans. He was a brilliant little chap, laid completely still for the full hour and a bit of MIBG, TOMO and CT scans. Together these will give the most complete picture of Adam's disease, a full 3-dimensional image map. I hate scans. I can't imagine any NB parents that don't hate scans. It's a dichotomy of deep foreboding coupled with a need to be relaxed and settle one's child down so they will lie motionless for the requisite length of time. It never gets any easier. I've reached a point where I feel compelled to watch the image as it appears on the screen, but at the same time I really don't want to see it. And so today I sat in front of the monitor and watched various areas of his little body light up the screen without knowing for certain what I was looking at. The official report is unlikely to be available until next week.

Just before lunchtime Adam was taken off his 24-hour hydration, which now means he has more freedom to move around within his room. It took three attempts to get Adam to his scans on the 5th floor (we are on the 11th). Problems with the lifts caused long delays and 'radioactive boy' (as Adam calls himself) couldn't be left out in an uncontrolled area. Allegedly. When we got down to Nuclear Medicine they were either unaware that Adam had high-dose MIBG rather than the normal scan dose, they knew something everybody else didn't about the risk of radioactive contamination, or they just didn't care.

After a shower, change of pyjamas and clean bedclothes he was feeling quite refreshed. I even went into his room for a little game on the Nintendo Wii, albeit with the lead-lined metal screen between us. He beat me at bowling and tennis - I let him win of course.

Tomorrow we find out whether we will be allowed to take Adam out of the hospital for an hour or so over the weekend. The radiation levels in the room don't seem to be receding very quickly so we're not getting our hopes up. More drinking and more showering required. The radioactive agent is excreted in urine and through the skin.

Wednesday, 29 September 2010

UCH - Day Two

Adam spent the morning in the ward playroom playing the PS3 and doing arts and crafts. At midday we returned to Room 2 so the nurse could put up his pre-hydration. Around 2:30 four people in white coats came up to the ward to administer Adam's MIBG infusion. Around 20 minutes later it was all done. The white coats packed up their equipment and trundled back up the corridor from whence they came. The door to Adam's room slid gently across until it was fully closed and he settled down for a week or more of solitary confinement.

Each hour we take a 60 second reading of the radioactivity coming from Adam, and it's this reading that will determine when he can leave the room, when he can leave the hospital for some outside air (I hesitate to call it 'fresh' - this is Central London), and when he can come home again. On entering the room Alison and I must don plastic apron, gloves and overshoes. We also take in a counter that measures the radiation levels to which we are exposed whilst in the room. On leaving we remove the protective items and place them in the yellow bin, close the protective door, and note down the time that we entered the room, and the counter reading on entry and exit. That's how it will be for the next 7 days or so.

Tomorrow Adam will undergo scans. 

Tuesday, 28 September 2010

UCH - Day One

As I write this I am sat in rented accommodation in the West End of London. Adam is spending his first night on the 11th floor of University College Hospital. Alison is there also, in an adjoining alcove with a pull curtain. I can't describe it as a room. Jake and Jessica are back in Epsom being looked after by grandparents.

Tomorrow Adam's treatment begins. Except for the isolation we are not expecting it to be too much of an ordeal. Will it do any good? Only time will tell. We hope so. With every fiber of our bodies, we hope so.

Friday, 24 September 2010

The best laid plans and all that...

Ask any parent of a child with Neuroblastoma and they'll tell you the same thing. Plan at your peril. Of course I already knew this myself as Adam has been battling this disease for 14 months now. Whilst we are still a long way off veteran status we have been in this particular boat long enough to understand it's path is neither predictable nor steady.

At the moment we are supposed to be into day 4 of our first week at UCH. We're not. We're still at home. The hospital called us on Monday to apologetically inform us that Adam would not be able to be admitted the following day as they were unable to organise sufficient levels of nursing cover for the weekend period. They assured us that everything would definitely be fine for Adam's treatment to take place next week instead. I wasn't very pleased, but what could I do? Shoot the messenger, or in this particular case the radiographer who drew the short straw and phoned to let us know?

Unfortunately we'd planned. My parents had travelled down from Norfolk to look after the kids for the week. They arrived a couple of hours before we got the phone call from UCH. I'd booked a serviced apartment off Regent's Park for a week so we would have a base near the hospital from which to prepare fresh food and drink for Adam, and somewhere for me to sleep. After surgery he lost 3 kilos in weight and it showed. Not having any idea of what the catering facilities at UCH were like, and given that the parent facilities consisted of a microwave oven, we decided that getting an apartment nearby was the best option. I'm sure I don't need to tell you what the cancellation policy was one day before arrival.

We'd also started to make plans for the following weeks too; when Adam would be away with Alison, then back at UCH, and then at the Marsden for high-dose. Everything would now be shifted by a week. I had another apartment lined up for the second round of MIBG therapy, but fortunately that booking hadn't yet been confirmed and no money had changed hands.

The date of Adam's treatment at UCH isn't the only thing that's changed since my last post. The whole treatment schedule has been re-evaluated by his doctors. The fact is that Adam is at the boundary of what medicine has to offer, certainly in the UK. High-dose and transplant is an important part of 'consolidation' when there is little or no evidence of disease left. It's not designed for clearing a large disease burden, which is what Adam still carries despite all the chemo he's had pumped into his body. If he were to be put through high-dose in his current condition my view, until I am convinced otherwise, is that it would be because there is nothing else left, not because there is any genuine expectation that it might succeed where all else before it has failed. Knowing what high-dose entails, and what risks are associated with it, I couldn't be any less sure about it. To the point where I can actually seeing us saying no. It's an incredibly scary prospect.

Then there is the problem of stem cells. As we failed to get an abundant supply there needs to be very careful consideration regarding treatments that are highly suppressive of bone marrow function. High-dose MIBG therapy and high-dose chemotherapy both require stem cell transplant. Giving back insufficient stem cells can lengthen the time that it takes for the bone marrow to recover and start working again. During this period, which may extend to many months, Adam would require transfusions of blood and platelets, and could not undergo any other type of treatment which was blood count dependent.

So the new schedule is for Adam to undergo a single course of MIBG therapy and then evaluate his response.. The hope would be to find evidence that Adam is responding to MIBG and therefore be more confident that going through with the second dose is the best course of action. The twin MIBG treatments would then certainly require some of Adam's stem cells to be returned to him. The complication with this approach is that there is plenty of evidence of children seemingly not responding to MIBG, only to discover a delayed response some weeks and even months later.

So nothing is clear. Which is par for the course I guess with Adam. My own view? Sadly I hold very little hope, and zero expectation, that MIBG will succeed where all the chemotherapy that has gone before it has failed. It's not our destiny for things to go to plan. That's not a defeatist attitude. I honestly believe that eventually Adam will beat this thing. There I've said it now, I'm not sure I have before.

In terms of his general well being Adam is doing great. In many ways not going into UCH this week has given his body that little bit extra time to recover at home, in an environment that we're all familiar with. It is just 23 days since his operation but his eating, general demeanour and range of movement are pretty much back to what they were before surgery. A few days ago he suddenly began running again, and followed this up with a night-time bicycle ride 'to test the lights out on his bike.'

As time goes on we're looking at more and more ways that we can help to make Adam as strong as possible through nutrition, environment, supplementation, detox, and alternative therapies. I've bought a Far Infra-red Sauna, a water ionizer, air ionizer, air sterilizers for his bedroom and around the house. We've imported a RIFE machine from abroad. We're having a complete blood, urine and stool analysis done that will show us any metabolic imbalances, nutritional deficiencies, parasitic infections, yeast infections, digestion, absorption, gut flora. I'm not stupid and I've not gone nuts; none of this may be directly relevant to curing Adam's cancer, but it can do a great deal towards making his body function in the most effective and efficient way possible. Is there anybody that doesn't think that's a good thing? We're also seriously thinking about alternative treatments that are not available in the UK, on the NHS or otherwise. And it feels like the time is fast approaching when we need to start looking seriously at trials outside the UK for which Adam might be eligible. He no longer makes a good guinea pig in this country because his response to upfront therapy has been very different to the norm, but somewhere there might be an experiment to which he's well suited.

Thursday, 16 September 2010

And so it begins...

It doesn't matter that I've prepared myself for the best part of the last twelve months for what is about to occur. It doesn't matter that I've written about it countless times. It doesn't matter that I am fully aware that this is something we need to do in order to give Adam the best chance of living a normal life again. Or that at times I've doubted we'd ever get to this point so just to be here and the fact that we're still fighting means something in itself. It doesn't matter. I'm still deeply scared. Anxious doesn't nearly cover it. There are so may what ifs and maybes. So many risks, Risks of serious complications, some of them life-threatening in themselves. Liver failure, heart damage, kidney damage, hearing loss, serious infections. And at the end of it we may be no further forward than we are now. In fact we may find ourselves coming out of the other side  in a worse position - the damage done to Adam's body will leave him weak and vulnerable - and not improbably with widespread disease still. Rightly or wrongly it feels to me like this is the final throw of the dice.

Tomorrow (Friday) and next Monday Adam is going for a hearing test, kidney function test, echo cardiogram, and a dental check-up. On Tuesday he's admitted to UCH in London and Wednesday he starts MIBG therapy. One week confined to the lead lined room with minimal outside contact. Then one week at home. Or rather somewhere that Jake and Jessica are not. There is a danger from the effects of secondary radiation, particularly in Adam's excretions, so for that week we have to live apart though we're not exactly sure what the living arrangements will be yet. Then it's back to UCH for another week of MIBG therapy in isolation.

That's the easy part.

On Oct 13th we transfer straight from UCH to Royal Marsden for High-Dose Chemotherapy with stem cell transplant. That usually means a 2-3 month in-patient stay. The reason for the back-to-back is so that there is only a single transplant involved. We were warned about things snowballing but now it's happening it so feels like everything is starting to unravel and what little control we may have had is being wrested from our grasp. He hasn't recovered properly from surgery yet and has lost a lot of the weight that had taken so long for him to put on. Gone in a fortnight. And soon all that hair that has slowly grown back will be gone too. Not gradually this time, but practically overnight.

There's just so much to think about. To be apprehensive about. Scared about.

We'll see you again in January. Or maybe late December if we're lucky.

Wednesday, 15 September 2010


We've had a mixed time of it post-surgery. If ever there was a case of two steps forward and one step back this was it. Although at times it's seemed more like one forward and two back. We got Adam home on the Sunday after surgery, just 4 days after the operation to remove his tumour. Monday and Tuesday morning continued to see an improvement in him, but then in the afternoon and through into Wednesday he just grew more lethargic and tired, refused food, drank very little and generally regressed back to being a very poorly boy.

Having taken him to hospital to have him checked out his demeanour then improved and we made a late decision to get away for the weekend. He gained a spring in his step, spent more time walking and exercising, his appetite started to return and we thought we were back on the right road. And then Tuesday happened.

Having had a good night's sleep he woke up and went into Jake's room (as per his usual routine). We then heard Jake shouting downstairs "Adam's being sick". And so he was. Head stuck down the toilet vomiting what looked like a mixture of bile and green phlegm (I'm sure you're thanking me for sharing these finer details with you). Hoping it was just a result of a build up of said phlegm during his sleep I proceeded to continue with Adam's daily routine which involves a glass of wheatgerm extract first thing in the morning taken on an empty stomach. I have never witnessed anything like it before in my life. He drank the contents no problem, but literally as soon as it hit his stomach it made a complete about turn and came straight back up again. It was like wheatgerm yo-yo. Down... and up. All of it. In one continuous motion.

All of the progress made over the weekend undone (again). No eating, very little drinking, the odd vomit. So frustrating and quite difficult to deal with. From being a healthy (looking) little boy pre-surgery Adam is now stick thin once more, all skin and bones and looking anything but healthy. He's lost several kilos in weight and it takes a conscious effort not to become disheartened by it. 'We've put all the weight back on before and we can put it all back on again this time round' I keep telling myself. But I know that's not going to happen anytime soon for next up is MIBG therapy and the dreaded high-dose chemotherapy and stem cell transplant. There'll be no long-term weight gain until this phase of Adam's treatment is well and truly over that's for sure.

Tuesday, 7 September 2010

Summer's Gone...

It may be an odd statement for a parent of a child with Cancer but we had lots of fun over the summer holidays. Much of it brought on by the kindness of a friend in giving us the use of their house near the coast, and some of it as an indirect result of Jake's broken arm. For it was the combination of these two things that ended up with us buying a caravan, which we would otherwise have never thought of doing. We spent many happy days down by the sea, firstly at our friends house and then several weekends at the caravan. I'm sure the kids had a summer as good as most.

But that's gone now. Largely forgotten. There can be no dwelling on such things. No time, and often no capacity, to reminisce or look fondly back on the holidays. It is the same with everything. We live in the here and now, constantly and only looking forward whether it be with trepidation or anticipation.. We have good and bad moments, but once they are over they are as good as lost. We worried about Adam's surgery, and then it went well. No time to dwell. It wasn't a victory it was a necessary evil. Now we worry about his lack of eating and difficulty moving around. Hopefully it will be soon rectified, and then we will focus on and worry about MIBG therapy. This world we inhabit is relentless and energy sapping.

Jake started secondary school this week. I took the obligatory photos and one day I may look back on them differently. But honestly, for the here and now it's not that important for me. In many households I am sure the end of summer holidays and kids going back to school, and especially off to a new school, was a big deal. It would've been in our house too in years gone by. But it has taken a conscious effort on our part for it not to be inconsequential this time, and although that's not really fair on Jake it could be no other way. The significance of everything else is diminished by the 'C' word.  The 'C' word is king. The 'C' word trumps all. My abiding memory of Jake starting secondary school? Wondering whether I will ever see the day when his brother treads the same path. That is what the 'C' word does.

Saturday, 4 September 2010


I feel conflicting emotions as I look at Adam sitting forlornly in the chair watching Avatar (the cartoon series not the film with the 10ft tall blue geezers). On one hand we've passed a major milestone on the road to wellness, one that we knew from the very onset last July that we'd have to go through. On the other hand the carefree little boy who was conducting running races and throwing stones into the sea just 5 days ago is now barely able to move without pain ripping through him. The incision wound stretches from one side of his belly right across to the other. There is nothing pretty about it and Adam has in the main insisted on keeping it hidden beneath surgical gauze. I'm not sure what Jessica will make of it when she sees it. Jake will almost certain recoil and never want to see it again. Strangely just before I left the hospital this evening I asked Adam if I could take a photo of him waving and send it to Jake & Jess so they can see how he's progressing. "Take a picture of this" was his response and he removed the gauze and exposed his wound in all it's glory. I'll show you the photo later on, but I didn't send it to Jake. Showing him and explaining is one thing but an unsolicited picture message is something else.
Along with the conflicting emotions I can't help but also feel a sense of guilt about what is Adam is going through right now. He never asked for this to happen, in many respects he wasn't even a willing participant. We told him that he was going to have some of the special medicine to put him to sleep and the doctor (we don't do the subtleties of doctors/consultants/surgeons and all the vagaries in between with our 6-year-old son) was going to make a cut in his belly and take out the lump that used to give him his tummy ache. However, that hardly prepared him for what he found on waking up in the intensive care unit with various tubes coming out of hands, arms, nose and, most uncomfortably of all, his 'winkie'. Of course, nothing could have prepared him, not without frightening him so badly that we'd have needed to sedate him just to get him to the hospital. As it was he donned the surgical gown and announced defiantly 'Come on, let's get it over with' before running (literally) down the corridor and into the preparation room next to the operating theatre. He even put the monitoring pads on himself. So to see him in pain. finding difficulty making even the simplest of movements, and croaking like an old man with a lifetime of smoking behind him leaves me feeling guilty that I was responsible for this, for the transformation from the Adam of a week ago to the Adam of today.
But of course I know this is a temporary state, and a necessary one for us to achieve our ultimate objective of getting Adam back to full health and cancer free. I've wondered (completely pointlessly) what things would've been like had we reached this stage when we were supposed to. For initial responders surgery follows rapid cojec induction therapy and stem cell harvest. So our consultant has been writing to the surgeon at St George's since last summer. On the original plan he should have been have his tumour removed last September or October. I think things would've been very different had it worked out that way. The upfront chemotherapy schedule is so intensive that everything is just a blur; you are caught up in a whirlwind of 3 days of in-patient stays every 10 days. Adam is without doubt a lot stronger now than he was back then, but at the same time the effects of any treatment that knocks him back are all the more pronounced precisely because of this fact.
Anyway that's enough of these musings. Let's stick to the facts for a while.
Last week we spent Monday to Friday at the Advance Institute for the Scotson Technique at East Grinstead ( Each morning Adam underwent a 90 minute session of Hyperbaric Oxygen Therapy (HBOT). This involved sitting in a pressurised chamber wearing a sealed hood into which 100% pure oxygen is piped. It takes 15 minutes to reach the simulated depth, 60 minutes breathing the oxygen at that depth, and then 15 minutes to ascend back up again. The whole thing is painless, if somewhat dull. We played Yahtzee and card games to pass the time away. Only once did Adam feel any discomfort when on Wednesday he got a built up of pressure in his ear whilst descending. However, all they did was pause whilst the pressure in his ear equalised and then before continuing further. In the afternoon we learnt some of the basic breathing exercises that Linda Scotson has developed to help improve the effectiveness and efficiency of the respiratory function. This enable the maximum amount of oxygen to be pumped round the body. We also covered some other items like diet, pH balance, electromagnetic stress and more. The centre is most commonly used by parents of children with neurologically based conditions such as Cerebral Palsy, Downs Syndrome, Epilepsy. We met other families who had travelled from the North of England, from the Midlands and even across the channel from France to seek help and advice. The atmosphere there was incredibly friendly and full of positive energy. I have little doubt we will return in the not too distant future.
Over the weekend the five of us went down to the caravan and had a relaxing bank holiday weekend. The weather, that for the preceding week had been awful, suddenly brightened up and we got out and about, did some walking, went down to the beach, played some pitch-and-putt golf. Adam was as full of energy as we could recall seeing him since he became ill. As Alison asked at one point after we had been out for the third time that day; "I don't know if it was the Oxygen therapy or just coincidental but we haven't once thought to take the pushchair out just in case Adam starts to get tired and needs a rest."
On Monday we awoke to the sound of Jessica, big mouth Jessica, telling Adam that he was going to St George's on Tuesday. As I got up and entered their bedroom he demanded to know why he was going there, which is when I explained (sort of, up to a point) what was going to be happening this week.
As well as Adam being admitted to St Georges for his pre-op assessments, Jake was also in hospital on Tuesday morning to have the cast off his arm. I'm happy to report that his arm has healed very well. Unfortunately due to the severity of and positioning of the break he's been told he cannot participate in any sporting activities, not even PE at school, for another 6 to 8 weeks. Next consultation is in 4 weeks time.

Adam was declared fit for surgery, as we knew he would be, and I was up early on Wednesday morning to get to the hospital for 7:30. He'd been nil-by-mouth since the previous evening and the first hour after I arrived was just questionnaires and form filling, name-band fitting, meeting the anaesthetist, that kind of stuff. And then the real business began. The nurse took us down the Lanesborough 3, which is where the surgery took place. There we met the lead surgeon who told us the scans looked good and he felt confident about removing Adam's tumour. At the same time, however, there were no certainties until he was on the table and they could see exactly what was going on. We had the warnings that this type of surgery was necessarily slow and complicated and would take as long as it took. Adam was their only patient today and it was possible that it could literally take all day. If everything was done and dusted by lunchtime that was a bonus, but it wasn't very likely.
At this point I was quite calm and collected, as was Alison I think. Adam was in very good shape going into surgery, probably as well as he could be (as the surgeon himself said to a rather jovial pre-surgery Adam "You're supposed to be ill"). Nothing we'd heard about in any of his scans had indicated that this was anything other than a very standard presentation. And Adam was in the hands of one of the leading surgeons in the UK for dealing with Neuroblastoma. The anaesthetist gave Adam a shot of the now familiar white medicine and he almost instantly started to snore. I kissed him gently on the forehead and told him I'd see him later. You can tell how calm I was as even now I didn't get too emotional. It's worth remembering that some 13 months before, back in July 2009, we'd been through something very similar (to this point at least) when we took Adam down for his biopsy and hickman line insertion. This experience this time was definitely less traumatic for me.
My mindset on leaving the operating theatres and walking down the corridor was that we'd hear nothing until lunchtime at least. But of course the mind wanders and different scenarios play out in your head as time ticks by. The surgery will be over really quickly; Adam's tumour will practically drop out, everything will be fine and we'll unexpectedly get a call in a couple of hours to day it's all over and we can go down to recovery to see him. There will be complications and they will be unable to take the tumour out. They will find something unexpected such as his kidney being affected and the surgery will need to be much more invasive and damaging. And of course there are other, even more serious and sinister, scenarios that unwittingly enter into your consciousness too.

We hadn't given any thought at all to the practical issue of what to do in order to try and pass the time whilst we waited for news. So, almost by default, we bought some newspapers and magazines and headed to the restaurant for breakfast.

I had breakfast.

I read The Times.

I read The Guardian.

I read What Hi-fi and Video.

I (even) read The Radio Times.
As 1:30 approached we decided it was time for lunch. It was only after that when I started to be dominated by thoughts of how things were progressing with Adam's surgery, and those mind wandering scenarios began to worry me more and more. I suppose partly because it was clear by now that Adam's surgery wasn't going to be the bonus finished-by-lunchtime type.
Having tried sitting calmly and quietly in one of the waiting room chairs I eventually felt the need to get up and do something. I told Alison I was going for some fresh air and then decided I would go for walk the perimeter of the hospital. Now those of you that know St George's hospital will know that it's a big place and I can testify to the fact that it takes quite a long time to walk right round the outside of it. Of course I was half-way round, and in the middle of I knew not where when Alison took a call to say the surgeon wanted to speak to us up on the ward. I knew I was in trouble when I took the phone out of my pocket and saw 4 missed calls and 1 text message.
Now we hadn't actually been told that after surgery we'd be spoken to up on the ward. We actually thought (and I am pretty sure we were told this, it wasn't just because that's what happened last time) that we would be called after surgery to go down to the recovery room to see Adam. I don't think it matters how logical you are, and I was very logical, but there was still a bit of me that was a little panicked as I made my way back up to the ward. In the event we were met at the nurses station by the surgical registrar whose first words on seeing us were 'He's fine. The surgery went well'. I'm sure the relief must have been written across both our faces.
A more complete conversation followed with the lead surgeon. They had achieved a complete resection of Adam's tumour. This was indeed the news we had wanted to hear. Other than the main mass they couldn't see any evidence of further tumours or damage to the kidney, adrenal gland or sympathetic chain (part of the sympathetic nervous system). After talking with the radiographer at The Royal Marsden they mobilised Adam's kidney (moved it forward and folded it over) and checked behind. Despite everything appearing to be completely clean it was concluded that the safest action was to remove the left adrenal gland and left sympathetic chain. These are commonly where the Neuroblastoma originates and the loss of them is relatively inconsequential.
A little while later we made the walk to PICU (Paediatric Intensive Care Unit) where Adam was being looked after. Typical us, the PICU at St George's is currently being refurbished and they have temporarily decamped inside the Cardiothorasic Intensive Care Unit which is a good ten minute walk through the hospital corridors. And, somewhat annoyingly, has no facilities for parents to sleep close to their children. It's not the lack of parental beds that is annoying so much as the fact that nobody informed us of the temporary relocation. So we were completely unprepared. Still, I've learnt to be annoyingly steadfast where Adam is concerned so we reached an acceptable compromise and Alison was given a Z bed in a room just a few hundred yards away.
Nothing can really prepare you for seeing your child immediately after major surgery. There wasn't any blood or anything like that, but his little body still looked beaten up. He had a nasogastric tube to collect the green bile that builds up in the stomach, two arterial lines (inside of the wrist) and a line into the back of his hand for blood, antibiotics and paracetamol, one of the lines on his Hickman for both morphine and fluids, the other connected to the CVP monitor. That's central venous pressure for those that don't know. He had three monitors across his chest for blood pressure and heart rate. His thumb was connected to monitor pulse and oxygen levels in his blood (SpO2). And he had a catheter collecting his urine. I don't think I've missed anything out. The surgeon showed us the incision wound and I forced myself to take a look. I don't do blood and wounds and 'proper' hospital stuff really. I never could stand to watch Casualty. But it when it comes to my little boy I have to be a big brave Daddy. Kind of.
For the first 24 hours or so after surgery Adam spent most of his time asleep. During Thursday he began to take bits of water from a sponge on his tongue. Later in the afternoon they disconnected some of his monitors and lines and it seemed like we were taking the first steps on the road to recovery. By early evening we were out of ICU and back on to the ward.
It's now 24 hours since I started to write this post. In that time Adam has made excellent progress. He is now eating and drinking. He has had three poos, which means his bowels are fully woken up and back to normal (and thus I can stop posting on Facebook and Twitter every time the poor chap takes a dump now). He is no longer on fluids or morphine or antibiotics. In fact the only thing he is taking is oral paracetamol, and the only items of any concern are a slightly raised temperature and a low potassium level. The first we hope is just a result of the internal trauma and healing process and the second we hope will rectify itself now he has begun eating.
So 72 hours after major surgery and Adam is doing very well indeed. We need to build up his eating, and work on his mobility. At the moment he can shuffle around and moves gingerly from bed to chair and chair to bed, but that's it. Tomorrow we will get him walking. Or try to. For Adam generally doesn't do anything unless he is ready, and unless he's in control. That doesn't mean we can't nag a little however. It's like the power of suggestion. He'll only do it when he's ready and willing, but if you don't suggest it chances are he won't do it at all.
Wed 1st Sept - Pre- and Post- surgery
Thurs 2nd Sept - Post-surgery in ICU
Friday 3rd Sept - Back on children's surgical ward

Sat 4th Sept