Saturday, 31 December 2011

Happy New Year

Thought I would see the year out with a very (shock) brief post.

The first week of the year was spent in UCLH undergoing targeted internal radiation (MIBG) therapy for the second time. The last week has been spent in Germany undergoing a fifth cycle of immunotherapy. The first-half of the year was dominated by stem cell transplant and the slow recovery that followed. The second-half has been all about immunotherapy. We entered both with fear and trepidation, but Adam has got through them.

We cannot know what 2012 will hold for us, but we will continue just like we have in 2011, living one day at a time and seeing where that takes us.

Thank you to everybody who has supported us over the last year. Best Wishes to you all for 2012.

I leave you with the following images which describe Adam's 2011 better than I ever could in words ...

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Saturday, 24 December 2011

Hello Again My Old Friend … (Part Two)

So, this is the update that I intended to write when I began the last one. I guess I just had to get all that other stuff out of my system first. Look at it this way; that was the rant, this is the ramble.

In between all that other nonsense, talking to journalists, doing radio interviews and the like, we also made plans for our last scheduled visit to Greifswald for antibody therapy. We have one more trip at the end of January to make for end-of-treatment scans, but this is Adam's fifth and final cycle of antibodies. It's not inconceivable that we'll be back again later next year, as there is a chance we might be able to access treatment from America via Germany. Trying to get it through the UK is almost certainly a non-starter, but getting it from America to Germany, and then from Germany to UK (in the back of my van) is a more realistic possibility. Anyway, more of that another day, it's a work in (early) progress.

From the moment we realised we'd be out here for Christmas and New Year we had always planned on bringing Jake and Jessica out as well to spend the festive season together as a family. Perhaps if Adam had not tolerated treatment so well (the morphine wracked first cycle excepted) we might have thought differently. As it was we were faced not merely with repeating our preparation and packing as per previous cycles, but also the addition of two extra people and the small matter of Christmas to contend with whilst we were out here.

The mere fact that we are here, Adam has just completed the first week of IL-2 injections, and we are set fair for the coming weekend is a clear indication that we managed to successfully make the journey. Things, however, didn't necessarily start off that well. We made a strategic decision to bring as much stuff as we could for the kids to make things as comfortable and normal as possible for them. Lest anybody should forget we are, after all, spending two weeks with Adam going through cancer treatment. This isn't, as Jake keeps pointing out to his mates, much like a real holiday. You can hope treatment runs smoothly, you can even anticipate it's more likely than not to run smoothly based on previous experience, but what you most certainly cannot do, unless you are an ├╝ber Dummkopf, is bank on it being so. So we decided to bring a lot of stuff. And having made the decision to bring a lot of stuff we had to figure out how to transport it all down to Folkestone, across France, Belgium, Holland, and most of Germany to Greifswald. So we bought a bike rack and luggage box for the camper van. So far, so good.

Here's where my pre-occupation with media matters began to have adverse consequences elsewhere. Our Eurotunnel train across to France was booked for 4.20pm on Friday. The kids had stayed off school Friday morning, the plan being to have lunch and then set off around 2pm. At 10am said bike rack and luggage box were still sat in our hallway in their respective cardboard boxes. At 10:30am said bike rack and luggage box were out of their cardboard boxes and sat in the garage, in several pieces, together with nuts, bolts, brackets and fittings.

Oh. Dear. Me. Perhaps in hindsight it was unwise of me to have ignored everything for the previous three or four evenings.

At 3.30pm Jessica waved hello to her friend as she walked home from school past our house. At 4pm Alison called Eurotunnel and re-booked us on to the 7.20pm train. We departed on the 8.45pm.

We stayed overnight in Antwerp on Friday, so a couple of hours drive from Calais. We booked two rooms, which were kindly split between the 2nd and 4th floors, not ultra convenient when you're sharing a single overnight suitcase. Some consequence of having to put the names of separate adults on the room bookings I think. But it was late, it had been a very long day, and I was horribly grumpy. So to say I was not overly pleased to be told the hotel was full so there was nothing they could do, might be an understatement. "We're coming back on 3rd January, don't do it again" I barked at the guy behind reception as I stomped off to the lift. He probably thought 'Miserable *beep*, 2nd and 8th floor for you next time', so we'll see where we end up.

On Saturday morning after breakfast we took a cab into Antwerp and had a walk around. Our cab driver was an amiable fellow, and joined in with our conversation to tell us he used to drive lorries across England and Ireland. In fact he once got a bit lost in an articulated lorry and ended up 100 yards from Piccadilly Circus, requiring a police escort out of the city. The thought did cross my mind that maybe that's why he now drove cabs around Antwerp, but I kept it firmly to myself.

Antwerp was like one big building site, the main street we were on is being dug up from one end to the other, and I don't think we really saw it in its best light. We lunched at Wagamama, which is a firm favourite with all our kids, and then went back to the hotel to begin the second stage of our drive, from Antwerp to Bremen.

Another strategic decision we made was to spread the journey over three days, instead of two. We did so for a couple of reasons; the first being that we don't know quite how comfortable it would be travelling with five in the camper van instead of three, and the second being we didn't want to embark on a seven hour drive and then be faced with atrocious driving conditions that doubled our travelling time. Having not left until mid-afternoon it wasn't early by the time we arrived at the hotel in Bremen, but it wasn't as late as the night before. I'd booked the privately run hotel we were staying at online, and we entered through a side entrance to the bar area to be greeted by people eating, drinking … and smoking. I thought I'd gone back in time. Turns out after consulting the all-knowing Google that the law varies across Germany and in any case is not strictly enforced. I was nearly asphyxiated in the time it took to walk the thirty feet through to the main reception!

After a rather inauspicious start the rooms themselves proved to be much more satisfactory. And by that I mean they were lovely, all freshly, and very tastefully, furnished. We were up on the third floor and while there was a faint aroma in the corridor as a result of what was going on elsewhere, the rooms themselves were absolutely fine. Similarly the restaurant where we had breakfast the next morning was also a smoke-free zone and, probably because the door was kept closed at all times, didn't even have that stale lingering smell that comes with being in and around smokers, and smoking areas.

We decided to leave Bremen straight after breakfast, and as we checked-out to leave it began to snow … hard. Not too far up the road we entered a real snowstorm, with low visibility and traffic confined mainly to a single lane. For about an hour it  became a procession, conducted at around 40km/h. Just as we thought it was going to be a very long journey, the skies brightened and we drove out of the snow and into perfect driving conditions which continued all the way to Greifswald.

So we made it in reasonable time and the children have all made themselves quite comfortable here at the house. Having the three of them in the same room was never going to be ideal, but once they've settled down at night (a process that takes far longer than normal) they are sleeping soundly until morning. Both Jake & Jessica have been going to the hospital with Adam in the morning, and actually it's quite nice for them to see precisely what Adam has been doing out here these past months. On Wednesday we woke to several centimetres of snow, and during the latter part of the morning we went out into the grounds of the hospital, together with Ryan and his family, for a big snowball fight. Other than that day the weather has been reasonably mild here for this time of year.

In terms of treatment the first week has been an absolute breeze for Adam. He's had five IL-2 injections, an EEG, and three lots of blood work. We gave him anti-sickness for the latter part of the week as nausea has been the main side-effect during the previous couple of rounds. Apart from that, and the big red welts on both thighs, you wouldn't know anything was going on. He hasn't needed any paracetamol, the highest temperate we've recorded has been 37.1 and has had nothing remotely approaching a fever. In the evenings he's not been tired. When we've been out into town, or at the shopping centre, he's not complained that his legs or feet are aching. It still surprises us, given other reactions that he is like this, even on the fifth cycle.

We go into hospital on Monday to began antibodies themselves. This time Adam will be fitted with a portable pump from the off, and the doctors have agreed to start him on oral support meds and see if he copes without the need for IVs. If everything is fine we are free to leave he hospital and return to the house whenever we want, including later on Monday itself. Effectively that would make Adam the first child to have the treatment without any inpatient stay at all. Given this study has been running for more than a year-and-a-half that is not insignificant, so we are quite prepared to stay if we need to, and also transfer Adam back on to the IV pumps if it becomes apparent he's not coping well enough without. If we don't need to sleep at the hospital, and we don't need IV support, it will clearly be better for us to all be together at home next week, and it will also advance the study here as it will enable children similar to Adam to spend less time in hospital in the future.

I'm conscious of the fact that since the first cycle when Adam really wasn't very well at all my posts may give the impression that immunotherapy is a relatively innocuous treatment. The truth is that it's anything but. I have no idea why Adam has the response, or rather lack of response, that he does. I've no idea whether, from an effectiveness point of view, it means anything and nor do the doctors. Just last week a little boy on his first cycle suffered fluid build up around his spine, something they've never seen here before, and as a result is currently paralysed from the waist down. There's no rhyme nor reason to it, that could just as easily have been Adam, or any one of the other children who have been through this treatment. There is no predictor that tells you this will be okay for your child, but this won't. So far we've been lucky I guess, though we do know from Adam's EEGs that he is now classified as at an increased risk of seizures following the immunotherapy treatment he's had so far. All we can do is hope it doesn't happen, and increased risk remains just that, and nothing more.

This week has also been a harsh reminder, as if any of us needed reminding, just how cruel and unpredictable this disease can be. Other families on treatment here with us have received bad news, and now face added uncertainties through the Christmas & New Year period. None of these children deserve any of this. It's odd but even though we're in a foreign land we've probably grown to know people more during this period of Adam's treatment than any other since Rapid COJEC, the initial 80 day induction chemotherapy. Because Adam failed induction and carried on with more chemo whilst others progressed along the standard protocol, our paths stopped crossing with families at the hospital. We also went off to UCLH twice for MIBG therapy because the Marsden was undergoing building works. Whilst we remained in contact with other families we didn't actually see that much of them. Out here, being on the identical treatment schedule for six months, you see the same families time after time.

We will be enjoying our family Christmas together this year, and hoping to make it as special as possible for are own children, knowing only too well that we can neither predict where, nor how, we will be in twelve months time. But we will also be thinking of others too, when our kids aren't watching, when we haven't got our 'everything is fine and dandy' faces on.

It only remains for me to thank everybody who has read my drivel this year, kept Adam in their thoughts, and supported our appeal with both words and deeds.

Wishing you all a very Merry Christmas and a happy, but most of all healthy, New Year.

Thank you.

Nick, Alison, Jake, Jessica & ADAM!

Friday, 23 December 2011

Hello Again My Old Friend … (Part One)

Wow. It’s been so long since I last wrote anything on here, that I had to go back to the site to reacquaint myself with it. So hello again, I’m back to bother you once more.

For anybody who only follows Adam’s Appeal here, what the hell are you doing? There is so much more to see! Err, I mean rest assured I’ve not fallen into another malaise, nor lost my blogging mojo (say what?). I was just busy doing other stuff, primarily preparing for Christmas and our final round of antibody treatment in Germany taking our fight to have Adam’s antibody treatment in Germany funded by the NHS into the public domain in an attempt to try and break the impasse that we’d reached. What I should, of course, have been doing was preparing for Christmas and our final round of antibody treatment in Germany.

We’ve been fighting to have Adam’s treatment paid for by the NHS since March of this year. Yes, that’s right, March. Before it was even decided that we would be going to Germany, and not America. Months before we eventually began antibodies on August 1st. Knowing that Surrey PCT had already refused to fund another little boy’s treatment I had no doubts that they’d adopt the same stance with Adam. So my preparatory work started back in March when I wrote to the Department of Health on the general issue of funding of immunotherapy in Germany for those children who failed to meet the eligibility criteria for the UK trial. The original agreement in Parliament last year was for treatment in Germany to be funded during an interim period prior to a second, all inclusive trial, being established here. I actually received a response that appeared on the face of it to be potentially very helpful. Indeed Mr Peter Bone MP who had done a lot of his own work on this issue, and Dr Penelope Brock the lead investigator for the UK trial from Great Ormond Street Hospital, thought it was the clarification that everyone had been seeking. Unfortunately it wasn’t to be that simple, how utterly silly of any us to think for one moment that it might be, and as time passed it was clear nothing had materially changed.

In June Adam’s consultant made an application to Surrey PCT on his behalf for funding of immunotherapy treatment in Germany. It was turned down flat, without it now seems even being the subject of a discussion at a panel or meeting of any kind. Rather it was ‘triaged’, and confined to the waste bin, on the grounds that Surrey PCT do not, under any circumstances, fund experimental treatment abroad. Unequivocal, end-of-story, don’t come back because this judgement is full and final and is not open to discussion. Well they didn’t actually say that, not explicitly, I just read it between the lines. There was no doubt in my mind that it was the message they wanted to convey.


Of course being the annoying little individual that I am I was never going to slope away with my proverbial tail between my legs and let that be the end of the matter. We also had the considerable benefit of having the NB Alliance and Adam’s Appeal fund to fall back on which duly paid for Adam’s ticket on to the German immunotherapy ride.

At the end of June, actually before the Surrey PCT had rejected Adam’s funding request, but being presumptuous of the fact that they would, I met Chris Grayling our local MP for Epsom and Ewell. I had copied him on correspondence with, and from, the Department of Health in March so he already had some background. Two MPs had already intervened on behalf of their own constituents – Mr Peter Bone and Mr Neil Parish. Both had brought backbench debates to the House of Commons and (oddly enough) the respective PCTs had subsequently found it in their hearts to fund treatment in Germany. However, this was not possible in Adam’s case, for Chris Grayling is not a backbench MP, he is a member of the government. And under our current parliamentary system a member of the government cannot ask a question of the government – even if concerns an entirely different department.

So began a six month period of toing and froing between Department of Health and NHS Surrey. The former of which offered the repeated advice than it’s at the discretion of the latter to fund individual treatments under exceptional circumstances blah blah blah, matters of relapse,clinical benefit, and expert guidance, blah blah blah. And the latter of which offered the repeated advice that it recognised the former had issued guidance that all children should have treatment in Germany funded until such time as the second UK trial opened, but that it was not indicated where the funds to do so were being provided from.

Neither wanted to address the matter directly between themselves, but instead to keep issuing responses of the same vain, albeit more brief each time, so that eventually we’d get worn down, give up, and go away.

Wrong again.

Whilst we’ve been out in Germany the subject of funding has come up with several other families from the UK. They have all had funding from their respective PCTs, though not necessarily without battles of their own, and interventions of both senior clinicians and local politicians.

That’s the thing. My battle is generally perceived in the media campaign to be with NHS Surrey, obviously so as they are the route to get Adam’s funding under the current system. However, in truth, my bigger, hell my enormous gripe is with the ‘system’ itself, and more specifically the Department of Health.

The main UK antibody trial excludes kids like Adam on the grounds that they are not good candidates for a clinical experiment as they do not form part of a homogeneous subset. Fair enough (yes fair enough, cancer treatment in kids is one experiment after another, if you don’t reach an acceptance of that you might as well go and do yourself harm rather than let it eat you up that your child is part of it). However, zero thought was given to those who fell outside this strict eligibility criteria. Despite overwhelming pre-clinical and clinical evidence about the efficacy of monoclonal antibody therapy in neuroblastoma treatment no consideration was given as far as I can see. None. I’ve read of one child who didn’t get on the trial because they reached high-dose chemotherapy stage of the protocol six days later than the cut-off point. SIX DAYS. I mean, Adam missed it by six months and it still makes me fume that he is therefore consigned to the ‘sorry, you missed the bus and there isn’t another one coming through this country for you’ pile. I can’t imagine how it must feel to know that somebody somewhere has decided that just a few days is the difference between your child possibly having a better chance of life over death.

This lack of consideration was obviously identified pretty quickly, when the first child came along that couldn’t get on to the UK antibody trial. So it was all discussed in parliament in March 2010, Peter Bone the local MP of the child in question did a lot of work, as did Ann Keen on behalf of the then Labour government. And it was all agreed. The children who took longer to respond to upfront therapy and missed the cut-off, estimated to be around 5 or 6 per year, would be catered for as follows. A second trial would be established in the UK that would be all-inclusive, allowing those children ineligible for the original trial to get antibody therapy. In the meantime, such children would be able to travel to Greifswald in Germany for such treatment if their clinicians so advised, funded by the NHS. Not perfect, travelling to another country for treatment can never be so, but all things considered a satisfactory outcome. Get the new trial up and running as fast as possible, and in the meantime the NHS subsides the equivalent treatment abroad until such time as it can be offered directly in the UK. Simple, no?

NO. Not simple. Talk has never been cheaper. Nothing has materially changed from that day to this.

There is no second UK clinical trial open yet. It was going to be early 2011, then summer, autumn, by the end of the year. Now slated for sometime in early 2012.

There was no process put in place to fund antibody therapy abroad as an interim measure. No fast-track procedure to help families of children with neuroblastoma, and by god they need all the help they can get. No pot of money set aside to pay for this potentially life-saving treatment. Despite all the effort put in by a few individuals back in early 2010, and despite all the platitudes I’ve seen spoken, and written, since in support of children with cancer nothing has materially changed. Fifteen months on from that first case it is still no easier for me to get funding for Adam. In fact clearly the opposite is true, for as of today he’s still not being funded.

I do not want to see another letter, or another statement, from anybody expressing their sorrow or sympathy at Adam’s plight when it’s plain to me that actually they don’t really care. And I don’t mean they don’t care about Adam specifically, I mean they don’t care about children with this vile disease, and trying to ensure that each and every one of them have the best possible chance of beating it. Otherwise I would not be having to fight tooth-and-nail for what Adam has been rightfully entitled to since March 2010. Otherwise those in positions of influence would have been busting their collective arses to ensure the second UK trial was up and running long before now.

Just in case you were wondering, the whole thing makes my blood boil.

Anyway, I’ll get back to the actual story now before my head explodes. Having almost reached the end of treatment, and seeing no way forward, and having done the correct and proper thing by taking the matter up with my local MP it was time to bring everything out into the open. I’ve tried to be as honest, and upfront, as possible. I told Chris Grayling that I was going to the media, and why, before I even discussed issuing a press release with the charity.

And so last week we launched our media campaign. Most of it was done in the open, on Adam’s Twitter, Facebook and Tumblr sites. We gained some great coverage in the local press, most notably on BBC Radio Surrey and a front page report in the Epsom Guardian, and the story also gained a much wider audience when it was taken up by the Daily Mail Online.

I thought the stance taken by NHS Surrey in response was rather peculiar. They put out statements to the effect that the decision had been based upon the clinical evidence, assessment of benefits, and individual circumstances; when clearly as far as all available records showed it had been down to nothing of the sort. It was immediately dismissed without full consideration because it was a clinical trial abroad, and to date I have seen nothing to indicate it was subsequently later reviewed on any other basis.

Late Thursday afternoon in reply to an earlier request I had sent them, I received an email from NHS Surrey informing me that

“For patients that fall outside the entry criteria of the current UK trial a second trial is being set up with less stringent entry criteria and was expected to have opened in Autumn 2011 but and we have been in contact with GOSH to see if Adam could be transferred to this trial when it starts, however we have been informed  that this has been delayed, in view of this and in light of new evidence received relating to what has happened regarding other similar funding requests received by other PCTs NHS Surrey will  be relooking at Adam’s funding request. It will be considered by the Individual Funding Request Panel on 4th January.”

So there you have it. Nine months after starting out I still have no guarantee that Adam’s treatment will be funded. However, after originally getting turned down flat, spending six months not getting very much further forward, and gaining one week of press coverage we’ve now got a full panel meeting that will be considering Adam’s funding request early in the new year.

Some might ask why it had to come to this, I would be among them.

Others might ask why I am making such a big deal about it when clearly we had the funds to pay for the treatment, Adam received it in a timely way, and he’s now almost completed it. To those people I would say there are three reasons.

The first is simple, Adam is my son and like any normal parent I am given over to protecting and caring for him. But  this is one of the things that cancer tries it’s hardest to take away from you, instead you find yourself standing idly by watching helplessly as your child suffers repeatedly, from illness and treatment alike. I cannot therefore also stand idly by and watch Adam’s request being turned down, while others elsewhere are not. I cannot allow him to be treated any differently, to be seen as any less deserving, simply because of where he lives. Call it pride, call it stubbornness, call it whatever you like. I have to wake up to the reality of our situation every morning, and I can tell you that fighting for Adam in this somewhat small way makes it easier for me to do so. I might even go so far as to suggest it’s even helpful to have a fight that I can take on, maybe even win, on Adam’s behalf.  You see I can’t fight the real fight for him, can I?

The second reason is that £65,000 is a large sum of money. It’s a lot of sponsored walks, and cake sales, and collection tins. Charity should not exist to subsidise public services that are by definition free for all, and that is quite clearly what’s going on here. We know Adam is not going to have clear scans after we finish treatment in Germany, and we’re not ready to stop yet, cross our fingers, and hope he’ll be alright. We also know that we have no further treatment options available in the UK. So whatever we do will come out of America, and it will have to be paid for. How much? I have no idea at this precise moment in time. But if we have to physically go to America, and even live in America, which I am hoping will not be the case, it will not be cheap that’s for sure. And that’s not even considering what might happen, and what sort of funds we might need access to, should Adam show progression or relapse.

The final reason is my desire to highlight the inconsistencies, unfairness, and endless struggles that parents of children with neuroblastoma face, and maybe, just maybe contribute something to make it easier for other families in the future. It’s enough to have a child with this disease, to watch them go through so much. But to then be faced with all this other stuff besides. I wouldn’t believe it were it not for the fact I know it’s true, know because I have lived it and seen others live it too. I wasn’t hoping it would end up in the media, it would have been just fine with me if somebody at the Department of Health had actually sat down and done something positive to resolve the issue when I first wrote to them in March 2011 to say things weren’t working how they should have been, given what was agreed in Parliament a year before. However, I always expected I would end up having to take things public, and I suppose that in itself is a sad reflection of the way our system works … or more correctly doesn’t work.

One final thing, just so you know. I started this post without any intention of going over this whole sorry story again! It just sort of … happened …

Friday, 9 December 2011

It's the little things ...

Well the answer to that question was clearly 'No', whoever's in charge doesn't know we've got enough to do as it is. No sooner had I finished congratulating myself on a job well done after fixing both the cooker and kitchen sink, than Alison announced that the washing machine was leaking! Turns out that it wasn't actually leaking, but that water was spilling out from the open door. Water that had been running into the washing machine even when it was switched off ...

Faulty valve, fixed (not by me I add) without too much problem.

Car is back in action as well now, immobiliser problem.

Next thing to go will be our Virgin Media box, keeps freezing and stuttering. You mark my words.

Things feel a little odd at the moment. Usually around this time we would be getting the Christmas decorations out of the loft, and putting the lights up at the front of the house (all very tasteful, of course). However, as we leave for Germany next week we aren't doing any of that; nothing is coming down from the loft this year apart from the kids' santa sacks. I'm not sure when the spirit of Christmas normally comes knocking at our door, but this year it hasn't arrived yet, and I'm not entirely sure it's going to either.

Having said that I'm also looking forward to being away, having a bit of an adventure, doing something different. But that's crazy right? Adam is going to hospital for cancer treatment and I'm calling it a bit of an adventure. Jessica was looking forward to going to Germany (read on for explanation of the 'was'), Jake is a more coy but I think he'll be quite up for it too when the time comes even though he doesn't really show it. As for Adam, well he is just going to have to get used to not being king-of-the-castle as far as the van, and the house, are concerned.

The house that we rent in Greifswald we found on the internet. There aren't that many properties so we felt fortunate to have stumbled upon this one. The family we are renting from we had never met before, they speak no English and we speak no German, and so we communicate via Google Translate. And yet they want to help us any way they can, in their own words "to help Adam on his way". Their daughter left a card for Adam along with one of her DVDs for him to watch whilst we were there. They had broadband installed at the house so that I am able to work a little whilst we are out there. They are providing an air-bed and extra bedding so we can sleep five next time we are there. And before we left last time they came to the house to tell us they would not be renting it out again this year, so we could leave our stuff in the house and take the key back to England with us. Such kindness that I will be forever thankful for, and almost certainly forever unable to repay.

And so to the 'was' in 'Jessica was looking forward to going to Germany'. Sometimes it's the little things that get you. Jessica arrived home from school this week with news that "I felt confident enough this year to try out as a soloist in the school's Christmas performance, and I got a part!" … but went on to explain, whilst fighting back the tears, that she'd been forced to give it up as we'd be in Germany on the evening of the concert. I know there are any number of reasons why she might not have been able to take part but at that moment, as she cried her eyes out and told me she didn't want to go to Germany, I resented Adam's cancer so much. Sometimes it's not what this shitty situation does to me and Alison, sometimes it's not even what it does to Adam. It's what it does to Jake and Jessica, that often goes unnoticed, and largely gets ignored ...

Friday, 2 December 2011

Meanwhile, back at home …

The trip home was our easiest yet. We had sunshine throughout Monday, so much so that I had to draw the curtains in the back of the van so Adam could see his computer screen properly. He's so comfortable in there, it's like his own portable cinema room. Bench seat all to himself, snack and drinks cupboard right next to him. We were on the road for eight hours on Monday, and in the whole of that time he only asked "When are we there?" once. I praised him for being such a superstar, to which he responded "I just thoroughly enjoy watching my programmes." On Tuesday the good weather continued until we encountered our first rain a little over three miles from home!

It's going to come as something as a shock to Adam when we travel out again in a fortnight's time, and he has to share the back of the van with two other people. The plan next time is to spread the journey over three days, rather than two. That way if the kids get bored and start bickering at each other, we know we won't have to suffer it for so long. The other consideration is the weather; if road conditions turn out to be bad we can take our time knowing that we've only (!) got two hundred and fifty miles or so to drive each day.

On Wednesday our community nurse came to change Adam's bungs and dressing, and take bloods prior to our visit to the Royal Marsden the following day. This time we'd planned ahead, determined that we'd be able to go in, have the pump disconnected, get Adam's line flushed, collect the retinoic acid, and be on our way again without a hitch. Oh no, no, no, no. How could we have even have thought such a thing? Because of our unscheduled pump change last Friday evening, Adam's pump finished sometime during Thursday morning, and so Alison took him earlier than she otherwise would have. Being the seasoned campaigner that she is, she prepared lunch to take with her, and of course it was just as well she did. First off, she got a telling off for not making an appointment. We've just clocked up 6,000 miles travelling back-and-forth to Germany for treatment the UK cannot provide, and Alison get's a ticking off for not phoning up to say she's bringing Adam in to have his pump disconnected and his line flushed. Notwithstanding the fact that our community nurse had telephoned the shared care co-ordinator with Adam's blood results the day before in advance of him going up there. At least Alison doesn't let such things bother her as much as I do.

Then there was the retinoic acid. No, actually there wasn't the retinoic acid. Like the time before, and the time before that, and the time before that, there was no retinoic acid waiting to be collected. This time it wasn't Adam's blood work that was required, nor that he needed to be seen by a doctor. This time he'd already completed six courses, which is the total number according to standard protocol. And there was no authorisation for additional courses. I had previously raised the subject of Adam having a full twelve months of retinoic acid (and by 'raised the subject' I mean I'd sent emails, and had no reply). However, it also forms part of the study we are doing in Germany, so I had assumed whilst we were having immunotherapy there would be no question of it not continuing. I'm pleased to say that once we got the doctors involved it was all sorted out fairly speedily, and what we need to do now is ensure Adam's consultant has signed off the next course before we return in January. However, I think we must accept that we are destined to forever fail in our quest to have the stuff waiting for us when we walk through the door of the hospital.

Adam has been very well since we got back, probably the best he's been after any cycle so far. I can't think of a single outward sign that he's exhibited that would indicate he's just come off treatment. His last two EEGs on this cycle were probably the most worrisome aspect, showing an increased likelihood of seizures. However we've seen no visible sign of anything untoward so far.

We have precisely a fortnight now to sort out Christmas before we start back for Germany again, and as yet we've done nothing. On top of that we seem to be a bit jinxed at the moment. We returned after the third cycle to the news that our fridge/freezer had packed up. This time we've come back to find the heating element in the cooker has blown, the car won't start (can't even jump-start it), and the drainer/waste on the kitchen sink has broken and it doesn't look like it's possible to buy a like-for-like replacement. Doesn't whoever's in charge know we've got enough to do as it is?!?

Monday, 28 November 2011

Hat-trick ...

I decided I would go for the hat-trick, so here I am again. Three posts in as many days ... maybe I'm still feeling guilty for my prolonged absence. No, actually you right, that's got nothing to do with it. I'm stuck in a darkened hotel room in Antwerp, bored as can be whilst Adam catches up on his beauty sleep. Today we have driven over 500 miles across Germany, through Holland and into Belgium. Tomorrow we will complete the journey back to England for the fourth time.

There is, however, a genuine purpose to my post. It occurred to me I have not mentioned anything about Adam's official MRI report, nor about his bone marrow results.

The MRI I discussed with Prof. Lode on Thursday when we took Adam in for his IL-2, and ultrasound. The report states no evidence of soft-tissue disease, confirmed absence of left adrenal gland (removed during tumour surgery), and extensive abnormalities in the thoracic and lumbar spine, and pelvis, indicative of bone necrosis or metastases.

In a nutshell it doesn't tell us anything we don't already know. The abnormalities are consistent with the MIBG scan. They could be neuroblastoma, or matured cells, or necrosis (damaged bone tissue) from resolved disease, or even caused by the vast amount of highly toxic treatment Adam has undergone. In Prof. Lode's words "we see this result all the time." The most important point to take out of it is no soft-tissue disease. The rest we simply don't know.

The bone marrow results bugged me all weekend; basically because I hadn't got them. Dr Lange told me to remind him to call Cologne on Thursday when I was at the hospital, so he could find out the results to give to me on Friday. Remind him I did, and I assume he called. The problem was Dr Lange was in day care on Friday, and not on the ward. In my haste to be in and out of the hospital quickly I completely forgot that I needed to ask about Adam's results.

Which brings us to today, and the not particularly ideal scenario of having to ask for said results, and then drive home with them hanging over us if they contained bad news. Dr Lange is on vacation this week, so I knew I couldn't ask him; instead I asked the junior doctor who happened to be on the station when I walked in. After much searching and rifling through papers in various files, she eventually found a fax from Cologne. Suspicious crest of cells found in bone marrow ... No GD2 positive cells.

"No GD2 cells, so that's good", she said "But it also says they found a crest of cells, and that can be indicative of tumours."

It's okay, I was wearing my logical thinking cap, so I actually wasn't panicked by this statement. Firstly, I was talking to a junior doctor, who by her own admission couldn't really tell me what it meant. Secondly, Adam's last bone marrow tests at the Royal Marsden had shown 1% of abnormal cells by immunohistochemistry. At the time that finding had bothered me greatly and it had taken considerable, and repeated explanations, from Prof. Pearson to reassure me this was not Neuroblastoma and Adam's bond marrow was in fact clear. I figured the results from Cologne could just be the same finding of unknown abnormal cells. The one thing it definitely meant was we weren't leaving for home until I had spoken to Prof. Lode about it.

I suppose I was fortunate Prof Lode happened to be around, he's obviously very busy and not always at the hospital. I tracked him down, well actually I stalked him for a while, and asked him what the results meant. As far as he was concerned the results of the bone marrow were clear, there were no GD2 positive cells. As for the abnormal cells, we simply don't know.

You are by this point hopefully detecting a theme?

Nothing where Adam is concerned is ever straightforward or clear-cut.

I also learnt something interesting that I had not been previously aware of (it's good to talk you know). I appear to have been wrong in my assertion that the testing done at Cologne was cutting-edge. I now believe it's similar to the additional tests done at the Marsden, which themselves are more comprehensive than the techniques commonly employed elsewhere.

It transpires that samples of Adam's bone marrow were also sent to Vienna, where they were put through an advanced, and highly-sensitive, diagnostic technique for detecting neuroblastoma. The method automatically performs both immunohistochemistry to detect GD2 positive cells, and molecular cytogenetics to analyse cells for DNA abnormalities and mutations. Although he was unable to find the paperwork, Prof. Lode assured me he had seen Adam's report from Vienna, and it was clear. He had signed it off himself that morning. In so far as they only extract bone marrow from two sites in the hips, it is always possible to get a false negative result. But if a sample of bone marrow has neuroblastoma cells in it, the testing in Vienna will almost certainly find them.

I concluded by asking Prof. Lode whether we should always expect Adam's bone marrow results to throw up these suspicious, unknown cells. He nodded in the affirmative, "I think probably yes."

And on that note we left to come home ...

Sunday, 27 November 2011

Antibodies (Part Two)

Week two of this, the fourth, cycle of antibodies started precisely the same way as the previous. Adam got hooked up to the supporting meds during the course of the morning, and around 2pm the antibody went on. We didn't get into our room until late afternoon, as it was only vacated that same morning, and needed to be cleaned. Almost as soon as the antibodies had started to feed their way around Adam's system, he began to get the same redness and swollen look that he had during the same day on cycle three. The difference this time, of course, was that it wasn't completely unexpected and we knew if it continued to follow the same pattern it would only last for less than 24 hours. As it was the reaction was not as severe as last time, although Adam did get a fever and require IV paracetamol to bring it back down again. At 7pm he suddenly flaked and fell fast asleep, again not dissimilar to before.

The following morning his appearance was back to normal and he was back in good spirits. Through the course of that day, and the following morning, his novalgin was reduced in steady gradations from 2ml/hour to 0.5ml/hour and eventually switched off. Early Wednesday afternoon the fluids were taken down, he was transferred to a portable antibody pump, and we were told we could leave. Or rather in his own inimitable style, Doctor Lange stood and waved at Adam and said "Bye, bye." We decided we'd stay until after tea just to ensure Adam had no adverse reaction to switching to the portable antibody pump, nor to taking oral novalgin and ondansetron rather than having them intravenously. He didn't, so by Wednesday evening we were all back at the house reflecting on what had been just 48-hours as an in-patient this time. As Adam himself said the following morning, "I can't believe I'm not in hospital."

I still don't understand why Adam has never, ever, had any pain whatsoever from the antibody therapy. What is it about his body, his biology, his make-up, that means he doesn't react that way? He is the only child we have known since we have been coming out here who has felt nothing at all. And the fevers, whilst all around him where regularly getting to 39 degrees and above, Adam was struggling to muster a 38.5. Apart from Monday, the first day of antibody infusion, he hasn't needed paracetamol during this second week. The only reaction he does get is nausea from the IL-2 injections. During the first week of treatment it gets steadily worse, to the point where on Friday, for the second cycle in a row he has thrown up four or five hours after getting his injection. I think next time we are going to give him oral ondasetron on the Thursday and Friday of week one - Alison's suggestion, and it's a good one. Whilst it's great that he suffers so little with this treatment, I am minded to think it's also a bad thing that he tolerates it all so well; that somehow it can't possibly be doing it's job properly without more collateral damage. But, of course, I don't know. Nobody knows.

On Thursday we went up to the hospital for IL-2, and ultrasound. Doctor Lange did them one after the other and we weren't in very long. The ultrasound is more of a formality for Adam these days, as required by the protocol. It checks for potentially dangerous fluid accumulation around major organs caused by capillary leak syndrome; but it's obvious (and was confirmed by the ultrasound) that Adam has no such problems. On Friday the hospital visit was even swifter still. Adam had breakfast at the house before we went, and we had bloods taken, IL-2 injection done, EEG completed, and were on our way home again all within an hour. Of course, we had a second, unscheduled visit to the hospital later on Friday but even that proved to be less trouble than it might have been.

Once or twice during the latter part of the week, Alison or I have commented that Adam isn't doing much, not getting a lot exercise during the day. It then falls to the other to point at that ordinarily on this treatment children would be connected to a drip stand and doing well if they were able to make a couple of visits to the playroom during the course of the day. Sometimes it's not so naturally obvious to keep things in the right perspective.

Yesterday we went into town, and took a walk to Greifswald Christmas Market which now occupies the main square until the weekend before Christmas. Adam had a few rides on the little fairground attractions, and thoroughly enjoyed himself. We've not had snow on this visit, but it has been pretty cold, averaging around 3 or 4 degrees I guess. Ironically the reading on the van was 9 degrees yesterday when we went out in the morning, but it's the first day there's been a really biting wind and it felt much colder for it. I'm not so sure I'm looking forward to a time when the two, freezing cold air temperatures and biting wind, come together. It's difficult to get the right balance of clothes, as the house and hospital are both nice and warm. We're expecting it to be even colder when we're out here next time over Christmas and New Year, with a strong likelihood of snow. We've got the winter tyres on already (a legal requirement out here during winter), we've got snow chains to put on if necessary, we've go a portable shovel in the boot, and we've got our thermals at the ready. So bring it on.

For those of you not following my tumblr feed. Why not? Oh, and here are a few recent photos of the main man himself …

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Bye for now, talk again soon.

Saturday, 26 November 2011

Antibodies (Part One) …

A Lesson

Do not get too comfortable, do not get too complacent. That was our lesson for yesterday. It was 8:30 in the evening; I was sat at the computer desk red wine in hand, Alison was in the kitchen having just gone to refill her glass, and Adam was lying on the chair behind me playing his PS2 that we'd brought out with us. I'd just given him his thirty minute warning "Nearly time for you to go to bed, son." A few moments later I sensed movement behind me, but didn't react until I heard a panicked Adam exclaim "My pump has come off!" I spun round to see Adam standing in the middle of the lounge, and his portable antibody pump still sat on the chair where Adam himself had been seconds before.

First thought a generic one, this isn't good. Second thought, Adam's unclamped and his line is open. Third thought, the pump is still working and there's no way to turn it off. Adam is standing rooted to the spot, petrified that I'm going to shout at him. I'm not going to shout at him. We're in a bit of a pickle, but it's not of Adam's making. I clamped him off, and picked up the antibody pump. How come things like this always happen at inopportune moments? Why didn't it become disconnected in the middle of the afternoon, rather than just before Adam was due to go to bed. Antibody is a continuous infusion over ten days, so we couldn't just go to sleep and sort it out in the morning. And Adam's line had antibody sitting in it, we couldn't leave it like that either. I secured the line from the antibody pump with Adam's emergency clamping scissors to stop the fluid escaping (it only infuses as 1ml per hour so it wasn't exactly gushing out anyway), and placed the end into something as sterile as possible to protect it. The pump itself only had a few millilitres of fluid left in it, we were due to exchange it for a new one on Saturday afternoon.

We drove to the hospital and walked up to the ward. By coincidence the nurse at the station was the same one who had fitted Adam's pump on Wednesday afternoon. Though her English is not the best, her manner and expression is very pleasant indeed, and she doesn't get frustrated when we don't understand each other. Rather, it usually descends into humour and laughter, with neither of us entirely knowing precisely what we are laughing about. She looked a little surprised to see Adam and myself appearing at the door at 9:00pm on a Friday night. Then Alison, who was bringing up the rear, joined us and held out the unattached antibody pump by way of visual explanation.

The nurse said she would have to speak to the on-call doctor, I guess this wasn't a scenario that they see all that often. With no doctor actually being on the ward itself that late into the evening we knew it would most likely be a doctor who knew nothing of antibody therapy, and probably not a great deal more about oncology in general. Wrong! By a stroke of luck it was the same doctor who had been working on the children's oncology ward during our first two cycles of antibody therapy. We greeted him like an old friend - this might not be quite as problematic as we had feared. Our first task was to explain to him what Adam was doing with a portable pump in the first place on a Friday night; things had moved on since he was last involved there on a daily basis.

As we stood talking the nurse walked back in the preparation room. She had found Adam's new pump that was due to be fitted the next day. Our second stroke of luck. A plan was formulated. Instead of going back up to the ward the following afternoon we'd have the new pump fitted there and then. There's always some antibody left in the pump when it's disconnected back in England on the Thursday, so we knew that at worst we were going to lose about five or six hours of antibody infusion. Nothing of huge significance. So that was it. The nurse fitted the new pump, we thanked her and said goodnight, and headed back to the house. Adam was in bed just after 10pm. It had all turned out quite well in the end.


Now due to my recent hiatus, I'm all behind with these updates aren't I? So I've got to think back to what's happened over the past fortnight ... and I'm rubbish at that. Completely rubbish. Doubtless I'll get all the details wrong, or mixed-up; I'll have Alison chewing my ear telling me this never happened, or that was Thursday not Wednesday. I guess it's the price I must pay for being so tardy about keeping this updated in a timely manner.

What can I say about the journey over? Well, it was … familiar. We actually arrived the earliest we ever have, just after 5pm. IL-2 week was a little more involved than usual this time round because we had the small matter of an MRI scan and bone marrow extraction to contend with. MIBG, of course, we'd already had done in the UK, so we took across a CD with the images for the team in Greifswald to review.

MRI was Monday at 12:45pm, but as Adam doesn't need a general anaesthetic for diagnostic scans we didn't need to worry about not eating breakfast, or anything like that. We got to the hospital, had Adam's bloods taken, put his Emla patch on in preparation for his 31st IL-2 injection, and settled down to have breakfast whilst we waited to be called down for his EEG. At around 10:20am a nurse appeared to inform us that we had the MRI at ten o'clock, the implication being 'why are you in here eating at twenty minutes past?'

"I don't think so" I replied "It's at twelve forty-five, Dr Lange wrote it all down for us."

"I get Dr Lange."

In strides Dr Lange: "They changed the time."

"They can change what they like, but if nobody tells us it doesn't much matter does it?" I said with a heavy dose of English sarcasm.

I mean honestly. We hadn't been there five minutes and it was just like being back in England!

"Adam, take your patch off. You'll have to put a new one on once we get back from your scan. And hurry up and finish your breakfast!"

We made our way down to the imaging reception area downstairs, I walked up to the window and announced "Adam Bird is here". The woman on the other side responded with a speech in German, and she spoke so fast I wasn't even able to make a guess at the odd word here and there. "Englische", I said in explanation of my apparent bewilderment. So she repeated the exact same speech, only slightly faster this time, and strangely enough I still didn't understand a single word of it.

We found a waiting area and sat down. By now it was way past ten, and we'd obviously missed our appointed time, so we had to wait until there was an available slot. Adam's only ever had one MRI scan before, and that was of his hip and femur, so he's not as accustomed to them as he is everything else. He got settled down, strapped in, and headphones on. The technician in charge spoke very good English (nothing to do with the fact that we were English, simply the luck of the draw). He explained they had an iPod dock in our particular scanning room through which they could play music into Adam's headphones. That was the queue for me to frantically try and compile a playlist of whatever I had on my iPhone that Adam liked to listen too.

During the scan, Alison remained in the room with Adam, whilst I sat outside in the technician's suite. It's a strangely surreal experience, watching two people as they monitor your son's scans in real-time; one more focused on the procedure itself to ensure it captures what it's supposed to, the other scrolling periodically up and down the resultant images clearly looking for any abnormalities, the two of them conversing in a foreign tongue that means you cannot understand a word they are saying. So instead you watch the body language, and physical interactions, and ask all sorts of questions in your head. Why did he just stop halfway down the image, and then call the other one over to look at it? Why has he just been out and returned with a more senior colleague, and what are they now looking at together? I found myself, quite literally, sweating.

And then a third technician walked in, chomping on a pear, and started asking me where I lived. Turns out he'd been an intern in Chertsey (also in Surrey), but I'm afraid I wasn't much up for small talk. He had a leisurely look at the images as well - still munching away - and then proceeded to ask me where Adam's primary tumour was, and whether he'd had chemotherapy and radiotherapy; and then he walked away. At which point I could no longer contain myself and simply had to ask whether they could see anything on the scans. It's difficult to explain how you feel inside at a time like this. Adam is still in the scanner, and I know full well if the answer I get back is 'yes', his chances of survival become infinitesimally small. You don't actually feel sick, but you feel ready to be instantly sick.

I guess in one sense I was fortunate I had technicians in the room who spoke good English, "I can't see anything on the screen, everything looks normal." He then proceeded to take me up and down Adam's scan, showing me his lungs, liver, kidneys. I looked, but wasn't entirely focussed; I'd been told all I needed to know. In the last five minutes of the scan they added in (by remote-controlled infusion) a contrast agent through Adam's Hickman line to enhance the final images. I was told they would need to be reviewed, and a full report issued, before we could be certain there was nothing untoward, but there was nothing obvious.

We headed back upstairs and Adam placed another patch for his IL-2 injection. We went for the EEG, and by the time we returned sufficient time had elapsed for the Emla patch to have numbed Adam's skin in preparation for the injection. For some unknown reason, on the last cycle Adam became visibly more nervous of having his IL-2 injections. I mean, he didn't make a complete song-and-dance, scream and get upset. But he was a lot more unsure, and the process took much longer as a consequence. It became a running joke that no sooner had he hopped up on to the treatment table than he would announce he needed a wee, and run off to the toilet. It wasn't just a coincidence day-after-day, it was pre-injection nerves. This time round, however, he started as he meant to go on. Trousers down, patch off, everything in position, clean the area, pinch skin, 1-2-3, needle in, IL-2 in, needle out, gauze on, pressure applied, elastoplast on, trousers up, done. That's pretty much how it was every single day, all ten of them. I don't think any of the injections took more than two or three minutes from start to finish.

Having completed what we had come to the hospital to do Adam could finally assume the position, as he would each and every day during that first week, sitting on Ryan's bed alongside him as they played the Nintendo Wii together.

The Bone Marrow

On Wednesday morning Adam was scheduled to have his bone marrow taken for histological and immunological testing for neuroblastoma cells. We arrived as early as possible, as Adam needs to be nil-by-mouth for this procedure. It's conducted in the tech room on the ward itself here in Greifswald. Unsurprisingly Adam was in Ryan's room playing the Wii when it was time to go in. Ryan had been worried how Adam would be afterwards from the moment he'd woken up that morning. And Adam, knowing the uncontrollable rage he gets into at the Marsden when he comes round after having bone marrow done, took me to one side and said earnestly, "Dad, whatever you do just make sure I don't hit Ryan. Stand in the way, or something."

Doctor Lange explained that Adam would be sedated using a combination of Ketamine plus a mood-enhancing drug, and a third drug would be used to control his blood pressure (which can be elevated by the Ketamine). I asked why a mood-enhancer, and it was explained to me that they're not allowed to administer Ketamine without it, as it induces severe nightmares and hallucinogenic episodes. Not much arguing about that then. After checking the line with saline, the two drugs were administered and Adam drifted off to sleep. We left the room, and the door was closed and locked behind us. A short while later the same door re-opened and we were invited in whilst Adam came round from the sedation. We sat with him for a while in the treatment room, whilst he was still connected to various monitoring equipment for heart-rate, oxygen saturation, and blood pressure. He was then transferred to a normal bed and wheeled into Ryan's room to recover properly.

That's where the fun began. We'd been told to expect it, but even so. Adam started talking like a drunk, slurring his words to the point it was almost impossible to figure out what it was he was trying to say. And then he began pointing randomly at things. Gareth's head, for example, "You've got two heads. And two noses." So it continued "Mum, you've got four ears." As time passed the effects started to wear off, distant objects no longer appeared in duplicate and even those nearer took on a different form, "That's freaky" Adam said looking at his Mum, "You've got two eyes, but each eye's got two eyeballs in it!" These effects didn't last too long though, and he was soon back playing the Wii and eating some lunch. He was remarkably mobile given he'd just had two holes drilled in his back. At one point he toddled off to the bathroom and came back having removed and discarded the plasters covering his wounds. All-in-all it was a much more pleasant experience than ever it is at the Marsden. He may have been stoned out of his mind, and seeing double, but he was happy with it and not the least bit distressed. Indeed when he was completely back to his normal self he could remember perfectly well all the odd things that he had seen, and thought the whole thing really quite amusing.

Tuesday, 22 November 2011

No news isn't bad news ...

If you are wondering why I haven't updated for a while, do not fret. Adam is fine. I have just entered a phase in which, for some reason, it is proving all too much of an effort for me to put together a coherent update. Maybe now I've broken the ceasefire, even with this smallest of posts, I will find the motivation to compose something of greater length and significance.

Friday, 11 November 2011

Off ...

After lunch tomorrow we set off for Germany for the fourth time. Same old routine; overnight stop in Eindhoven on Saturday, drive through Germany to Greifswald on Sunday hoping to arrive around 6pm.

Adam has an MRI scheduled for Monday morning, and bone marrow tests on Wednesday.

We've heard through the grapevine that the hospital is getting ever busier; to the extent that not only is there no room at the parents house next week for two other UK families, but the hospital itself may well have too many children for the number of rooms they've got. It remains to be seen if there is going to be a problem when Adam is due to be an in-patient, next week we are just there during the mornings for IL-2 injections, bloods, EEG, etc. I don't much fancy having four to a room. Adam would be monumentally pissed off, and perfectly happy to let everybody know about it too. Oh well, at least we have the rental house, so we don't have any extra hassle in that regard; what a smart move that turned out to be in retrospect, even if I do say so myself!

Tuesday, 8 November 2011

EIGHT Tomorrow …

Cor blimey it’s Tuesday evening already. Doesn’t seem like five minutes since I wrote the last one of  these things. Our weekend was good, very good. On Saturday we had a visit from Ryan and his family en route to Germany for their next cycle of antibody therapy. Adam and Ryan, despite almost three years age difference, get along so well. Literally within seconds of Ryan arriving the two of them were off upstairs, and we hardly saw them again until they were called down for tea.

On Sunday Adam had his birthday party – a football party in our garden just as he’d asked for. Given all the rain we’d been having I was expecting it to be a very wet and muddy affair, but despite grey clouds overhead the rain thankfully stayed away. All the boys Adam had invited from school had a good time, and (shush, don’t tell anyone) I even thoroughly enjoyed supervising them. After they'd all left we fully expected Adam to be worn out from all the fresh air and running around. Not a bit of it, he headed upstairs with Jess to play some alternative version of hide-and-seek with lights out, doors closed, and glow sticks for torches.

Adam has been back at school in the mornings this week, and we are starting to get prepared for our fourth trip to Germany. Winter tyres are on the van, and snow chains in the garage ready to be loaded. On Saturday we’ll say farewell to Jake & Jess once more and start the long journey back to Greifswald.

Tomorrow, 9th November, is Adam’s eighth birthday. I SAID, EIGHT. THAT’S RIGHT, EIGHT!

When he was diagnosed, we didn’t think we’d see Adam turn six. When he failed induction therapy, we didn’t think we’d see Adam turn seven. And yet tomorrow Adam will turn eight. None of my words can ever be able to express to you just how wonderful that is …

Friday, 4 November 2011

Five Beautiful Little Words ...

"Stable disease, no new lesions."

I may not become paralysed with fear at scan time, but that doesn't mean I'm not acutely aware of what’s at stake. I don't discuss it much, nor drive myself insane speculating on what the outcome might be, but it’s always there looming. Imagine you’re standing on a ledge staring down into the abyss below, a silent hand resting on your shoulder. In an instant that hand can either push you in, or pull you back again. For me that’s what waiting for scan results is like. In some peculiar way it’s actually ok to be standing out there on the ledge. I could stand there forever if it means never being pushed in. Part of me wants to know the results, but part of me is happy not to know the results. The logical part of me knows sooner or later I’m going to get the results. Until then I’m somehow content to be out there on that ledge.

I know - I'm a crazy man.

The scan was on Friday, so I wasn't expecting to hear anything before the weekend. For most of the time we've been patients at the Marsden they have simply done planar MIBG scans i.e. front and back. More recently, however, they will do planar first and then a SPECT if they feel it's necessary. SPECT takes pictures at regular intervals through a full 360 degrees, and then computerised tomography generates a series of 3-D images. These images provide depth that is missing from basic anterior and posterior images, and so they tend to use it (at the Marsden at least) if there appears to be evidence of soft-tissue disease.

Adam had planar scans, and then the technician scuttled off to see whether there were any problems with the images, and whether they needed to do SPECT imaging. There wasn't. And they didn't.

Over the weekend we took to the caravan for the last time this year. The park closes between November and March, so there's a fair bit of sorting out that needs doing to close up for winter. With travelling back-and-forth to Germany taking up three weekends in every five we've not been there anything like as much as we did last year; but there'll be other years. Adam had a busy day on Saturday, outside playing hide-and-seek and football during the afternoon, then walking down to the centre for a Halloween party in the evening. Whilst Alison and I had a drink at the bar, Jessica and Adam spent a good hour outside in near darkness in the outdoor play area, amusing themselves on the climbing frame and slides like the semi-abandoned children they were.

On Sunday Adam ached. A lot. All over. His legs, his back, his neck. For the first week that we're back, when he is still connected to the portable antibody pump until Thursday, Adam doesn't go back to school at all. So for three weeks he'd led quite a sedentary lifestyle. Going from that to full-on, all afternoon and evening, mayhem it was little wonder that he paid for it on Sunday. A couple of days into this week and most of the aches and pains had subsided, except for the sides of his legs just above his ankles. Adam decided the Vitamin E cream he uses on his face whilst on retinoic acid would also be good for aching legs, so he's taken to applying it there as well. It can be difficult at times not to get unduly concerned whenever there is an ache or a pain, even if there is a perfectly obvious explanation; it's the nature of the situation we're in. It always gives me a little added comfort when he has aches in both legs, as a symetrically matching pair is even less likely to be disease-related.

Halloween itself passed us by this year, we were simply too consumed by other things to find time for the whole pumpkin, dress-up, trick-or-treat thing. Kids didn't seem to mind, even Adam didn't make a fuss beyond asking the once whether he could go out. In any case we don't let the children eat surgery sweets or chocolate; except for health foods masquerading as sweets, and 70% dark chocolate.

I tried calling Adam's consultant on Monday to see if there were any results on the system yet. You see, despite being content to be out on that ledge, I also know I need to know because only then can we plan accordingly. We've made plans for travelling through the harsh winter in Germany, for spending Christmas as a family out in Greifswald, whilst at the same time knowing full well that bad news from these scans means none of that would be happening. Instead we'd be seeking out a new plan of action, one almost certainly involving early phase clinical trials in North America. Our consultant was at St George's when I called, so I sent an email instead, asking that she call me when the results were available. During the afternoon I received a reply back saying that yes she would.

Tuesday came and went without any call, and without any email.

Late on Wednesday morning I tried calling once more. Again I was told she was at St Georges, but I knew that this was clinic day at the Marsden (we've had plenty of Wednesday afternoon clinic appointments ourselves there in the past two years). So I asked for a message to be left on her desk for when she returned. I was so sure I'd get a call Wednesday afternoon, probably late on after the end of the scheduled appointments. I even took to carrying my mobile phone around everywhere with me, which I never normally do. It even went back-and-forth with me to the toilet.

Wednesday afternoon came and went without any call, and without any email.

By Thursday afternoon I was beginning to wonder what was going on. We have to take copies of the scans back to Germany with us, but I didn't want to request copies from the person responsible for that until after I knew the results. Don't ask me why, I just didn't. To be honest if the scan was bad I wasn't really wanting to go back to Germany at all … which is why I had asked to have it over here in the first place.

A few hours later Adam's consultant called me to say his scans were down to be looked at in Thursday's MDTB or Multi-disciplinary Tumour Board, where specialists from different areas get together as a group to discuss patients. The official report from Nuclear Medicine interpreted Adam's MIBG scan as Stable disease, no new lesions. Possible minor improvement in the femoral region. Stable disease, no new lesions. Five little words, five beautiful little words, that I will never ever get too used to hearing. The silent hand pulled me back from the ledge once more, and our plans for the remaining two cycles in Germany could continue in earnest. I remain skeptical about the 'possible minor improvement' simply because Adam's uptake is diffuse and widespread. It must be very difficult indeed to discern whether or not it's slightly sparser, slightly less bright, than it was before. Indeed one of the concerns I had whilst awaiting the results was whether Adam's inability to stay completely still during the scan might falsely give rise to the appearance of more dense uptake.

Of course, we still have an MRI scan, and bone marrow tests, to negotiate once we are back out in Germany, but we can be reasonably (though not entirely) confident that the outcome of those will not show up anything vastly contradictory. In certain cases, neuroblastoma can either present as, or become, non-MIBG avid; nobody knows why this is so. In such instances an MIBG scan, the gold standard in neuroblastoma imaging, actually gives a lie to what is really going on inside the body. I would have been more concerned about such a possibly had Adam's scan showed marked improvement compared to previous, but the MRI scan will tell us for definite that there isn't something else going on that we don't know about. Having an MRI in Germany means not exposing Adam to the radiation that comes with a CT scan, as routinely used in the U.K. There is a specific reason why I wanted bone marrow tests undertaken in Germany too. Bilateral aspirates and trephines have repeatedly been clear for over a year now, and yet the highest concentration of MIBG uptake is in Adam's right pelvic area. Two things that to me seem almost incompatible with each other. The Marsden do a number of immunological tests over-and-above standard protocol (NB84a, NSE and Neurofilament for those interested), all of which have been negative. However, as part of the German immunotherapy study, bone marrow samples are sent to a lab in Cologne where they undergo immunohistochemistry using a GD2 antigen that is able to detect sub-microscopic levels of neuroblastoma. Which is why I was happy to do bone marrow in Germany this time, rather than back home at the Marsden.

Adam has been back at school this week, part-time. He loves being back amongst his friends. It never ceases to amaze me how they welcome him back into the fold each time after his three-week absence, and they all pick up where they left off. Being in junior school now, Adam's uniform includes a proper shirt and tie. However, Adam hates having anything tight round his neck that impacts on his biopsy scar where his lymph node was removed. Similarly due to his Hickman line he only ever wears shirts loose, and never tucked in. Before he started, Alison wrote a note to the school politely requesting them not to ask Adam to do his top button up, or tuck his shirt in. They haven't, and we've never had any problems. This week, however, Adam has been a little more highly strung than usual, a little more sensitive, so it made me wonder how he would react if he ever were told to smarten himself up. So whilst getting dressed on Tuesday I asked him what he would say if one of the teachers shouted at him across the playground "Boy, do your shirt up and tighten that tie of yours!". He replied, quite matter-of-factly, I'd say "Sorry, I have cancer." Fair enough son, I told him, that's probably good enough to stop most people in their tracks!

Yesterday I got a call from Alison to say 'we've now got a proper little schoolboy'; those were her exact words. At the end of lunch break, during a (no doubt frenetic) game of cops-and-robbers Adam had clashed heads with another little boy and got himself a very bruised cheekbone and eye socket. His first ever real shiner. He was clearly very upset when I spoke to him on the phone, all timid and tearful. He told his Mum that he came off worst because he was taller than the other boy, and that at least it happened right at the END of playtime. By the time I got home from work he was back to his normal self again, albeit sporting a new Rocky-esque look. He's still gone off to school this morning intent on another game of cops-and-robbers. He's decided he'll be alright if he's a robber, as yesterday was the only day he was a cop - and look what happened. He may be fast approaching his eighth birthday, and he may already have been through more than most of us ever will, but he's still, first and foremost, a child at heart ...

Saturday, 29 October 2011

Sunshine ...

The sun is shining, it's a beautiful morning, and so far today I haven't managed to find a single thing to whinge about!

Adam is doing well. We haven't noticed any after-effects of the antibodies this time round. We started round 6 of retinoic acid today (at 75mg!). He is planning on going out trick-or-treating this weekend. It's funny the things you remember most vividly, but this will be the third Halloween that Adam has been able to participate in since he was diagnosed. I remember in 2009, after he had failed induction therapy, driving round the roads near our home, with a bald, steroid-bloated, Adam dressed in his old spiderman outfit that was way too small for him. Happy memories, tinged with a certain amount of sadness.

Alison and I have got so much sorting out to do between now and the end of the year. Not only do we have birthdays and parties coming up, but we only have four weeks in the UK until Christmas. Yikes!

Adam's scan passed off without major incident, although he is getting more fidgety than he ever used to be. I blame antibody therapy, after all it has left him with 'mild dysrhythmia with evidence of occipital accentuation' according to his EEG. Alison thinks the reason is much more simple; he has so many EEGs in Germany that he's just fed up with having to lie perfectly still so often.

I will post once we have the scan results. For some reason we seem to be able to cope okay in the waiting-for-results period.

Friday, 28 October 2011

And so it goes on … and on ...

So guess what? Not only was Adam's retinoic acid not ready to collect yesterday, but today I get a text message from Alison informing me that they've lowered his dose to 70mg twice a day. I called the hospital. Who was responsible? Don't know, nothing on his notes. Why? Don't know, nothing on his notes. This will be the sixth round of retinoic acid, and for the other five he's been on 75mg without any problems other than some dry skin. Greifswald actually calculate the dose at 80mg, based on his weight; but we're happy to stick with 75mg; at that level in the pharmacokenetic testing we achieved well in excess of what's considered to be a therapeutic dose. We suspect somebody at the Marsden used his weight from six weeks ago when he was still recovering from pneumonia, and the after-effects of the first cycle of antibodies. But even then he's had another course of retinoic acid - at 75mg, since that weight was taken!

I do try not to shoot the messenger, it's not the fault of the poor nurse that happens to be the one to pick up the telephone. But I do get frustrated at times when even the most seemingly straightforward of things can't get done without any hassle. Just as well Alison was at the hospital and not me, she's far more laid back about these things than I am.

In other news, there's been no further communication between the Marsden and Greifswald regarding handling of blood/serum samples, so we'll not be taking Adam back in for any more blood work over the next fortnight. A lot of it comes down to money I'm sure - there is no budget to be sending Adam's samples over to Germany, and there's no agreement for the hospital in Germany to reimburse them for it either. I'm keeping well out of it; the samples are for the study and in no way related to Adam's treatment schedule, or dosing. Right now, the fewer trips we have to make to the Marsden the better as far as I'm concerned. At this point in time, as I shall be reminding the doctors in future, they are our shared care centre. It's Germany that are calling the shots; they are primarily responsible for Adam's current treatment. Continuing in that vain, the next time we need retinoic acid I'm going to take them our discharge letter from Germany and ask for it to be dispensed based upon their written instructions (not recommendations, but instructions). We'll see if that works better. Probably not ...

Thursday, 27 October 2011

And so it goes on ...

Adam was at the Marsden today to have his portable antibody pump disconnected, collect the next course of retinoic acid, and have his MIBG injection in preparation for tomorrow's scan. As much as it pains me to say it (but I'm going to anyway), it does feel like we are all alone on this journey now. The doctors in Greifswald are nice, don't get me wrong, but Adam is little more than another child having their immunotherapy treatment. We are thankful they are prepared to treat him, but it's a two-way street and they need the kids (like Adam) equally as much or they have no study. I have no real relationship with the consultant or professor there. The one time I did attempt to open a conversation with Professor Lode regarding Adam's response (or lack thereof) to treatment, and the results of all the different tests and scans we'd done, it was clear after about five seconds that he hadn't got the first clue what I was talking about.

Back home at the Marsden nobody seems interested either; I have clearly badgered them with too many emails, to the point where they now simply ignore them and never respond. I guess they are too busy moving the next batch of kids through treatment protocols. As usual today didn't quite go exactly according to plan. Among the multitude of things that we need to catch-up on each time we return from Germany, we forgot Adam's thyroid glands needed blocking with Potassium Iodide before his MIBG injection, otherwise the radioactive iodine gets taken up by them … and they get obliterated. Nobody from the Marsden had thought to call to remind us. After some discussion we decided to give him a double-dose and leave the injection until the last possible moment (the diagnostic radiolabeled iodine expired at 4pm). Oh, and of course the retinoic acid wasn't ready either, the pharmacists won't write it up without having their own blood work done (we are guessing). Still annoys me though, just give me the drugs we know what we are doing. I swear I'm going to bring them home from Germany next time, it'll be much easier.

Adam is off the neurontin now, we weened him off it slightly quicker this time. We're also intending to start retinoic acid over the coming weekend so he's not taking it whilst we are travelling; it'll be one less thing to sort out.

And so to the MIBG scan. Tomorrow we arrive at that same place we've arrived at so many times before. It's not literally a life-or-death scenario, and yet at the same time that's precisely what it is. Adam will have his scan during the afternoon, and next week we'll get the results that will determine where we go next. I suppose we are hoping for stable disease, as then we (think we) know what we are dealing with. If the scan is better than before then we have to re-evaluate what we think is going on inside Adam's body. If there is progressive disease … if there is progressive disease then our situation changes in an instant from being difficult but manageable, to our worst nightmare. Stable, or improved and we complete immunotherapy treatment in Germany. Progression and we're looking at America as our last, and only, hope. That's how life is, and how life will be, for us from now on. We have plans for next week, for next month, just like everybody does. However, we know that it all comes with a caveat that everything could change in a second.

Yes we have plans ...

In a couple of weeks Adam will be eight years old, a few days before we are due to travel back to Germany for the fourth cycle. He was five when he was diagnosed, and he has grown up so much in those two-and-a-bit years. He's had to. We are having a small birthday party for him on the weekend with some friends from school. As long as there isn't anything contagious going around, Adam should be able to go back to school part-time after half-term.

Whilst we are away next time it will be Jessica's birthday too; she'll be spending her tenth birthday some seven hundred plus miles away from her Mum & Dad. On the upside I'm sure she'll be spoilt rotten by her Nan & Grandad. Her birthday party is planned for next time we're back, between cycles four and five. We're still to decide if she gets her presents before we go, after we come back, or on her birthday when we're not here.

Adam's fifth cycle spans the whole of the festive season, so we are making plans for the whole family to travel to Germany for Christmas and New Year. It'll mean taking the other two kids out of school during term time, but I can't imagine it being too big a problem. And if it is … well … tough. We haven't yet worked out the specifics of how we've going to fit all five of us in the van; I mean we take enough stuff when it's just the three of us. One thing's for sure though, Santa will be travelling light when he visits our rental home in Greifswald.

The weather in Germany can get extremely bad in winter, and we've been warned to expect several feet of snow. As we're determined to continue to make the trip by road (there is no Plan B), we've got to purchase winter tyres and snow chains for the camper van, the former of which are a legal requirement in Germany.

There is so much to organise and sort out, and only two-and-a-half weeks back in England between each cycle. By the end of all this we're definitely going to need a break!

Yes we have plans … but there's no escaping that above all it's tomorrow's scan that will determine our immediate future.

Tuesday, 25 October 2011


Just about to leave for the final leg of our journey home. Adam has been in good spirits, as evidenced by the fact that he only asked 'when are we there?' three times during our seven-and-a-half hour drive yesterday.

Apart from Monday when he went a bit elephant man, this round has been a breeze for Adam. In truth his biggest problem was boredom. We implemented a semi-ban on the playroom because of all the coughs, colds, and other germs that congregated there during the day. On Thursday a little Russian girl was in there with her contagion prevention face mask. However, they don't help much when she was taking it off to sneeze, and blow her nose ... and then discarding used tissues all over the tables and toys!

We left the hospital on Saturday afternoon, to go back to our rented accommodation. Adam really likes it there; his room has an office desk in it and Adam takes to the leather chair to watch the laptop. Sometimes we have to remind ourselves that he is upstairs.

The weather has been nice this time round; generally sunny with clear blue skies, but quite cold. On Sunday Adam and I took a little walk up the road so he could stretch his legs and get some fresh air. Turns out that inmediately after a week on 14.18 antibodies and IL-2, Adam gets insanely itchy feet when he walks any reasonable distance. Happened on the last round when he walked from the hospital to the hotel, and so it did again on Sunday. So much so we had to pause for a rest at a bus-stop before making it back to the house. No idea what causes it, but it doesn't last more than a couple of days.

Friday, 21 October 2011

If in doubt … ask …

I asked the doctor this morning about Adam’s (mostly) lack of reactions to all things antibody. I should have done it before, but better late than never.

They take LOTS of blood as part of this trial each Monday, Wednesday and Friday. One of the tests they do is to take a serum sample, and see how it reacts to neuroblastoma cells in their lab. If there is no reaction this would be indicative of Adam’s body producing an immune reaction to the ch14.18 antibody itself. Known as a Human Anti-Chimeric Antibody (HACA) response, this is where the body produces it’s own antibodies to neutralize the intravenously delivered 14.18 antibodies, stopping them doing their job i.e. attaching to GD2 receptors on neuroblastoma cells. It also stops them causing pain by attaching to receptors on normal nerve cell endings. It’s a common reaction/problem in mouse-derived antibodies (HAMA response), but much less so in chimeric antibodies (which are part murine, part human). It is the reason why chimeric 14.18 is used rather than antibodies of a solely murine origin.

The upshot is the doctors know that the ch14.18 antibodies in Adam’s blood serum are reacting to neuroblastoma cells.

And the moral of this story is; if in doubt … blog ask.

Thursday, 20 October 2011

Thinking, always thinking …

My mind works in mysterious ways sometimes.

I was sat here earlier thinking that if I could get away with it I’d have Adam straight off the Novalgin, half the dose of Neurontin, and do away with the anti-sickness. What possible motive could I have for this other than being a cruel and heartless father, who wants to see his child in pain? Maybe, subconsciously, that’s really it. However, having watched Adam through the whole of cycle two, and the last three days of this cycle, I seriously wonder what effect this treatment is having. I see and hear about the reactions of other kids, even into cycles three, four and five. And then I look at Adam and ask myself how he can remain so unaffected.

I didn’t like what happened on Monday, but it was a demonstration that his body was having some sort of reaction to the antibody therapy. Are the antibodies really doing their job? Is Adam’s immune system, revved-up by IL-2, attacking neuroblastoma cells whilst at the same time having no discernable effect elsewhere? So I figure, if we reduce all the pain medication to a point where Adam can feel something, then at least we’ll know something is happening. I’m just being logical is all.

Then again, I’d hate to see him in the sort of state he was in during, and after, cycle one. So basically, I’m stuffed; can’t win. Only thing to do is keep hoping that the antibodies are doing their job, and we’ll have a positive outcome at the end of this six months of treatment.

And now I’m sat here thinking about what I thought about earlier, and thinking I should be careful what I wish for. I hope I don’t wake up in the morning now to find Adam having all sorts of pain and adverse reactions to the treatment. Damn, bugger and blast.

Wednesday, 19 October 2011

Normal service resumed …

Yesterday was a much better day, and today has continued in the same vain. The intense redness has dissipated, the puffy eyes have gone, and Adam has resumed his normal inpatient duties. Namely, sitting in bed watching kids TV, interspersed with an occasional period of play on the Nintendo DS, or stroll down the corridor to the playroom; basically he’s waiting until it’s time to get discharged – which we are hoping will be Saturday. If he remains like this I see no reason why not (remind me again, what was I saying in my previous post?). Once the antibody is transferred to the portable infusion pump sometime Saturday afternoon the plan is to return to the rental house. Then we’ll come back for final blood work, and discharge letter, on Monday morning.I asked the doctor about the reaction that Adam had on Monday, presumably  to the antibodies given the timing of it. His response was one that will resonate with most families going through this treatment; we’ve all heard it at various times.
“Yes. We have seen it before, but we don’t know why it happens.”
“Why this time round, and nothing during cycles one and two?”
“We cannot say.” As in we haven’t got a clue, rather than I know but I can’t tell you.
At the moment everything is pretty much the same as it was during the second cycle. Adam is eating well, he has no pain, no fever, no cough, no hives, no fluid retention or weight gain. His sleep is broken by the noise, and comings and goings on the ward, but in the big scheme of things it’s not important.
We are waiting to hear precisely what scans Adam will be having at the end of October / start of November before he starts cycle four, as I want the Marsden to repeat some of the additional investigations that we did over the summer, before we started. These re-staging results will determine whether or not we can complete the full five cycles of antibody treatment.
I also heard back from Department of Health today regarding NHS Surrey’s refusal to fund Adam’s treatment. They basically repeated everything they’ve already said, without offering any potential solution for taking things forward. They don’t want to get involved, except to offer their sympathies, and some pious nonsense about wanting to improve survival chances for every child with neuroblastoma. Each new family from the UK that we’ve met here has had their treatment funded, and that makes the situation all the more galling. So we carry on fighting until somebody is big enough to stand in front of me and tell me precisely why my son is less deserving of his country’s support.