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!
x

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.

Wrong.

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?!?