Tübingen symposium ...

Last Thursday morning I flew out to Stuttgart to attend the neuroblastoma symposium being held in the nearby town of Tübingen. I'd never attended a meeting or conference of this type before, so I was very keen to see if I found it useful, and whether I managed to understand at least part of what was being discussed. If so, might this be something that I could get involved in on a more regular basis? As one of the doctors there rightly pointed out to me knowledge is power.

Turns out the symposium was really useful and I understood enough of it (albeit not every mutated gene, deleted short arm chromosome, microRNA signature or laparoscopic surgical procedure) to find it informative without being completely mind-boggling.

The biggest eye-opener was the work that the Germans are doing - have been doing for years - trying to cure children with relapsed neuroblastoma. The UK has never had an systematic approach to trying to cure relapsed neuroblastoma. Until recently it never had any protocol whatsoever for treating them save for palliative chemotherapy.

The U.S. has a lot more drug trials, phase I and phase II clinical studies on which children with relapsed neuroblastoma are enrolled. However, many if not most of these are to see if a treatment is effective so that it might find it's way into upfront therapy, maybe initially for slow responders. They are not being developed and trialled purposefully to give children with relapsed neuroblastoma a second chance. Some of them do work well for a small subset of relapse children, but it's a matter by a combination of luck and judgement, of being in the right place at the right time with the right type of disease.

If a treatment works in a relapse setting and finds its way into upfront therapy you might not see it back in a relapse setting against for many many years. Just look at how 14.18 antibody therapy has evolved for evidence of that phenomenon.

The Germans, mainly in Tübingen itself, have been doing haploidentical transplants for many years. They've optimised the process to both maximize efficacy and minimize negative side-effects. They select the parent donor to try to get a KIR-ligand mismatch, a condition that lessens the likelihood of Natural Killer (NK) cells receiving inhibitory signals and being turned off. They prepare grafts by depleting T and B cells so that the chance or graft-versus-host disease (GvHD) is more remote. And they co-transfuse large numbers of NK cells at the time of transplant to try and maximize the anti-tumour effect. Early results were presented which were both impressive and encouraging. With the clear caveat that it would be many years before long-term survival outcomes could be established.

At the close of the symposium the Head of Paediatric Oncology at Universitätsklinikum Tübingen left the final word to a young medical researcher who had just started work in the labs there. Here was a young man who more than twenty years before had been diagnosed with neuroblastoma and treated by the very doctors that he now stood alongside. He had relapsed, and received a stem cell transplant. He had relapsed again, and became the first patient in Germany to be treated with monoclonal antibodies. He went on to have a complete response, and had been disease-free ever since. He was now stood before us as a long-term survivor of twice-relapsed neuroblastoma. It was a pretty amazing story. And one that told me that at as far as the German philosophy is concerned, there is always some hope.

As well as the work going on in Tübingen itself, it was also very interesting to hear more about what's going on in Greifswald, where Adam was treated. We spoke to Holger Lode and it was clear they are doing a lot of work around immunological therapies. It was also clear he is both convinced about, and committed to, this kind of approach. They are developing an anti-idiotype antibody with the idea that instead of infusing anti-GD2 antibodies, they could give anti-idiotype antibodies which would result in those same GD2 antibodies being produced by the immune system itself. The benefit being that these self-made antibodies would continue to work forever, a kind of permanent anti-GD2 therapy. They are also looking at novel drug combinations, such as the addition of fenretinide to complement and enhance the efficacy of ch14.18 antibody therapy.

I almost wished I was German. Almost. What was abundantly clear, unless there's a lot of very well kept secret work going on, is just how far behind the UK is where this stuff is concerned. For what reason(s) I just don't know.

So what has all this new found knowledge got to do with Adam? Well not a whole lot at this precise moment in time, but it could be at some stage. And I do think for other UK children facing relapse the strategy they've got in Germany with RIST, haploidentical transplantation, and antibody therapy might be a tough one to better right now. You've got to get to minimal disease prior to transplant, and ideally you need some stem cells bagged because of the possibility, however small, of the donor graft being rejected. The only other unknown is the long-term side effects of this type of transplantation in young children, which as yet nobody knows and won't for years to come. Then again, as far as relapsed neuroblastoma is concerned, long-term side-effects are not something the vast majority of parents ever need to worry about. It will be really something when the day comes that they do.

There is definitely a stigma around haploidentical transplantation. Parents are naturally afraid of it, myself included, and I suppose that's because it's an unknown. I've been told that if you asked parents whose children have been through it they would tell you it's nothing like as bad as autologous stem cell transplant that almost all neuroblastoma children go through as part of standard upfront therapy. The problem is that until the first child that we know goes through it, and the first parents share their experience, there will remain, rightly or wrongly, a fear of the unknown.

Most of us were nervous and unsure about antibody therapy, because of what we did know. But I think seeing many children go through it and come out the other side provides a certain reassurance that doesn't yet exist where haplo-transplant is concerned. We also remember how horrible putting our kids through stem cell transplant was the first time round, and thinking haplo must almost by definition be worse, creates a mental barrier that has to be overcome.

But having sat through what I did, and after hearing what I did, I think this might, just might, be something that is going to make a big difference to relapsed neuroblastoma in the months and years ahead …

To ask or not to ask ...

Adam's bone marrow results from Vienna have come back negative for neuroblastoma cells. However, as we've now come to expect it wasn't quite that straightforward. Though the answer is definitive, the process by which we got it wasn't an entirely smooth one.

Normally I'm not the type who goes chasing down their consultant for scan or test results before they're due. If I know Adam is being scanned on Tuesday/Wednesday, and the images reviewed in the multidisciplinary team meeting on Thursday I'm content ('happy' isn't quite the right word) to wait for our scheduled appointment at which we can get the full picture, a consensus option, and discuss on that basis.

Doing scans and bone marrow tests in Germany has completely screwed me up in this regard. First off there was the MRI. I wanted to get the results of that before we left for home, and we know what happened there. Then there was the bone marrow results from Vienna. Taking much much longer than last time. Was something amiss? A backlog at the lab? Nobody from Greifswald chasing for an answer? I'm sitting 800 miles away asking myself all these questions, and the more basic question … to ask or not to ask?

Having been told that Adam's bone marrow samples that were sent to Cologne tested for negative for GD2 I was actually fairly relaxed about the results from Vienna, but all the same we needed to get confirmation. It couldn't simply be left hanging. I'd asked before during the course of the back-and-forth surrounding Adam's MRI scan, and been told they were still not back. But when I emailed last Wednesday the response this time was different. The consultant in Greifswald had called Vienna and been told that 'suspicious cells' had shown up in the bone marrow samples, so they were moving on to a more specific testing procedure using only that subset of cells. They'd have an answer by the start of this week.

Why wasn't anything ever simple? Three weeks after Adam's bone marrow had been taken I was now being told they'd found suspicious cells, but that it would be several days and not until after the coming weekend before we knew what the situation was. Honestly, I think our greatest achievement through all this has been that we haven't been reduced to quivering wrecks long before now.

I won't say I wasn't worried, because that would be an outright lie. It doesn't matter that I've learned a lot over these past two years, nor that I can look at things these days quite objectively. Adam is my son and therefore it's impossible to stop the fear in my heart prevailing over the rationale in my brain. There were two perfectly plausible explanations for what I'd been told. One was that tumour cells had been found in Adam's bone marrow, the other was that they hadn't.

I could rationalise that the most probable explanation was the latter. Think about it. The tests from Cologne had come back negative. We'd had abnormal cells show up a year ago in Adam's bone marrow samples analysed by the Royal Marsden. After the third round of antibodies, bone marrow results from Cologne identified 'crests of suspicious cells' and yet neither they, nor Vienna, had found any actual tumour cells. So it wasn't as though we hadn't seen something like this before.

All the same though, it didn't necessarily mean the outcome this time would be the same. And it's that which gnaws at you, that which starts to haunt you when the house is quiet and you've time to dwell upon it.

Almost all neuroblastoma cells express something called GD2 on their cell surface. The way they test these cells is to stain the samples with a fluorescence tagged anti-GD2 antibody. The idea is that the antibodies will adhere to those cells expressing GD2 i.e. neuroblastoma cells and the fluorescence will them make them identifiable. In the lab in Vienna they use a machine that automatically scans for such a signal, making it able to detect something in the order of 1 GD2 positive cell amongst 1 million normal cells. It is really sensitive.

The thing with this technique is that it's possible for other cells to express GD2, though not so uniformly as neuroblastoma. It's also possible that the staining process leaves residue which subsequently lights up on examination. Because the testing done in Vienna is so sensitive and you are actively trying to identify one tumour cell out of a million this is a problem. So what they do is having identified some apparently GD2 positive cells they then use a second technique that looks for DNA aberrations inside those suspect cells to determine their true nature. The first test (anti-GD2) is highly sensitive, the second (I-FISH) is highly specific. Together they form one the most comprehensive testing techniques available anywhere.

On Thursday morning I flew out to Stuttgart to attend a neuroblastoma symposium being held in the nearby town of Tübingen. I very briefly considered not going in light of the new uncertainty over Adam's bone marrow results, but what good would that have done?

The symposium proved to be really useful and informative. Having dipped my toes in the water I don't think it will be the last such meeting I'll be attending. It was very apparent that the German doctors are very much at the forefront of trying to find new ways to cure children of this disease, particularly the significant number who relapse after initial therapy.

I returned from Germany on Sunday and was greeted by the same underwhelming welcome home that I usually receive from my kids. Far to busy doing something else - I think they noticed I had been gone for three days.

On Monday afternoon I received an email from Greifswald telling me that the second line testing in Vienna had failed to find any DNA aberrations in the GD2 positive cells from the bone marrow sample, and therefore it was concluded to be clear. Which my brain knew all along was the most likely outcome, but which my heart was mighty relieved to be told was the now definitely the case.

So now we just have to get the repeat MRI done; I am hoping this week rather than the 29th. I don't much care that there might not have been enough time for it to resolve itself if the underlying cause is some non-malignant infection. The only thing that matters is that it hasn't grown any bigger. If it's no longer visible that will be a bonus. If it has grown bigger we will need to take some further action without delay. If it's the same size, fine. We'll re-scan again in another four weeks. And we'll keep on scanning until either it does get bigger or it goes away of its own accord.

Adam has started to go back to school this week, following half-term. For the past couple of days he's been coming home after lunch, but some of his friends have been telling him they want him to stay for the whole day. We'll see how the rest of this week pans out. His teacher has mixed all the tables up and he's no longer sitting with any of his friends, so it will be interesting to see how he copes. He needs to get some routine, some stability, some discipline, some normality. That's what my head is telling me. My heart, meanwhile, is still stuck on the previous page dealing with the MRI issue. It's telling me that until that's resolved we should be very careful about getting too far ahead of ourselves ...

29th February ...

That's what you get when a week ago your consultant at the Royal Marsden requests an MRI scan by 20th February. You get an appointment for 29th February. I called the hospital up. There are no available slots before then. None.

So we've gone from a scan in the next "fortnight" when we met our consultant on 3rd February, to a scan in the next "two weeks" when I talked to our consultant on the telephone last week, to a scan a fortnight tomorrow. Not that I can blame our consultant, I had it confirmed to me that the request was made for before the 20th. They just can't do it. Which leaves us in purgatory for at least another two weeks. And despite the more reassuring noises we've heard since returning from Germany, we know what neuroblastoma is capable in the space of just a week or two.

On one hand I don't want to come across as paranoid and irrational for the sake of a few days here or there … and on the other I JUST WANT THE MRI SCAN DONE NOW.

The week after the week before ...

I'm back with another update after my self-imposed break from blogging, tweeting, and face-booking. Which, incidentally, was because there were people who needed to be told what was going on with Adam before I started saying anything publicly about it, and until we'd had the MIBG scan it would've been largely pointless to say anything as we really didn't know what the situation was. To some extent, of course, we still don't really know.

Adam has had a good week. We've all had a pretty good week. On Sunday Adam, Jessica and myself went out and played in the snow for a good hour or so. Adam loves plonking himself down in the stuff. He's the worst of all opponents when it comes to snowballing, shows no mercy and calls timeout every time he takes a single direct hit himself.

Adam's bone marrow results from Vienna are still not back, I've no idea what's caused such a long delay this time round. The good news is the results from Cologne are back and there were no GD-2 positive cells in either sample. So another plus, though I believe the tests they perform at the lab in Vienna are even more sensitive so we continue to wait and see on those

The team at the Marsden have now looked at Adam's MRI scan, and re-examined his SPECT MIBG images alongside. Obviously, they can see the enlarged lymph node (they are more committal than the German doctors on what it is), but they've confirmed there's nothing on the SPECT that correlates with it. Not much else to be said now as far as those two scans are concerned.

The repeat MRI will be done sometime in the next fortnight. If the lymph node gets any bigger it would be visible on an ultrasound, but on balance they've decided to do an MRI. I wouldn't have been happy with anything else so that's good … no having to make a nuisance of myself. Well no more so than usual.

In terms of his general health Adam's been doing pretty well. Out in Germany, and a couple of times since we've been back he's had odd nights of broken sleep which is not something we like because that was one of the first signs that something was wrong way back when - not that we picked up on it at the time. But this time round we've put it down to him getting cold, as his duvet's been off when we've gone into him, and for that last four or five nights he's slept like the proverbial log. He's eating well and at the last weigh-in was 27.7 kilos which I'm pretty sure is the heaviest he's ever been. He certainly seems more chunky every time I look at him, and I wouldn't want to be carrying him very far these days.

The 13-cis-retinoic acid is doing it's stuff again, making Adam's skin dry, cracking his lips, and giving him glass eyes. His dose has increased to 160mg per day due to his weight increase, but as the capsules come in 20mg or 5mg he's actually gone from twelve capsules a day down to eight. Not that taking pills or capsules is an issue for Adam. He freaks me out sometimes how he pops a good sized gel cap in his mouth and then proceeds to start talking with it in there. I'm offering his water up but he's not the least bothered about getting it down quickly. Sometimes with smaller pills, like anti-sickness and antacid, he'll even decide to take two or more at a time.

The effects of the retinoic acid seem to be more pronounced the longer he stays on it, maybe it's some kind of cumulative effect. Now we're no longer going out to Germany for antibodies, he's back on a four-week cycle, two on and two off. For all that he doesn't seem too bothered about it, and ironically the only time he complains is if it stings on one of the infrequent occasions he puts cream on his face.

Adam has started back at school. Last week we didn't even mention it to him, but this week he started going in after first playtime and coming home before lunch, then staying at school for lunch and coming home at the start of afternoon lessons. On Friday he wanted to stay for lunch, but then come home instead of going out for second playtime. And he wanted his Mum to bring his boots so he could walk home with her and have a snowball fight. Alison, of course, duly obliged, and Adam got his wish.

This week is half-term, but we have no plans. It's nice to have some time at home without thinking about our next trip to Germany in a week or two, which has been how we've lived since the beginning of August last year.

I'm still trying to figure out what we do next; if nothing materialises as a result the whole MRI episode Adam will finish 13-cis-RA in May, so we've got until then to get a plan in place. Next Thursday and Friday I'm off to a neuroblastoma symposium in Tübingen (near Stuttgart), so maybe I'll get some inspiration from that. And in the back of my mind I've still got to think about what happens if this next MRI shows up more than the last one ...

An MRI, an MIBG, and unanswered questions …

The MRI scan we did in Germany on 23rd January showed a new tumour at the top of Adam's pelvis, between aorta and vena cava inferior. We were left in absolutely no doubt that this was disease progression. We were obviously devastated, and then faced an agonising ten day wait for results of the MIBG scan that we'd been warned was likely to show more widespread disease. In the event the MIBG was unchanged, and by that assessment Adam's disease remained stable. We still do not know what was showing on the MRI, and plan to repeat the scan in the next week or two, for comparison. Will the 'mass' still be there? Will it have grown larger? We simply don't know until after we've seen the follow-up MRI …

---

"The final report will not be available until Thursday or Friday, after the radiographers have their meeting and study all the images together. But they report two things; first the necrosis or metastases in the spine and pelvis is the same, second they report a kind of lymphoma between the aorta and vena cava, which is new. Obviously, this is not a good finding."

Whoever said 'no news is good news', or more specifically 'no news is almost certainly good news', was completely and utterly full of shit.

Remember that ledge I told you about? This one here, the one I find myself standing on when it comes time for Adam's scans? Well a couple of weeks ago I got pushed off. Only instead of falling all the way into the abyss below I found myself clinging on by my fingertips. Right now I've got one knee back up and I've regained a bit of control, a bit of composure. But it remains a precarious position and it could still go either way.

Our trip to Germany for end-of-treatment scans started badly. And as much as it was down to the negligence and/or incompetence of individuals in the Nuclear Medicine department at the Royal Marsden, it was also at least in part down to me. We were supposed to have an MIBG scan here before going out to Greifswald for MRI and bone marrow biopsies. What I should have done was to phone the nuclear medicine department on an almost daily basis until all the necessary form filling and paper pushing was complete, and the scan scheduled. I didn't. I thought two weeks notice, and a couple of email reminders (to which I received reassuring replies) would be sufficient. It wasn't.

At that point I made my next mistake. I should have done one of two things; either plan to extend our stay in Germany to take in MIBG scans as well, or more preferably delay our trip to Germany so we could still get the MIBG scan in over here first. I thought about both, I did neither. We went ahead as planned with Germany, and accepted an MIBG scan at the Royal Marsden on Tuesday and Wednesday of the following week. There were understandable reasons for this, but they weren't to do with treatment or scans per se. It's a lesson learned for the future. Hopefully.

So two weeks ago, Monday 23 January, we arrived at the Universitätsmedizin Greifswald for Adam's MRI scan. In November we had a very good English speaker overseeing the scan, and I was present in the viewing room throughout. To the point where, after watching this guy scroll up and down through Adam's torso a dozen or more times, I felt compelled to ask whether there was anything showing before my head exploded. Thankfully, there wasn't. This time we were in the other scanning room, and the team there spoke only marginally more English between them than Alison and I spoke German. So from the outset I was never going to stay to watch over them and inevitably end up trying to second guess what they were doing and saying without any chance of meaningful dialogue. I left once Adam was comfortable, a process that itself took longer than usual, after one of the technicians was a bit over zealous with the alcohol spray whilst sterilising his central line access and some of the discharge ended up in Adam's eyes. I went up to the children's ward and waited for Adam and Alison to join me, which they did around an hour-and-a-half later.

Bone marrow biopsy was scheduled for Tuesday morning; our plan was to be on our way home after breakfast on Wednesday stopping off for a now customary overnight stay in Antwerp. Unfortunately the lab technician responsible for preparing the slides for testing had been off sick for a while, and the only other person who could do the job was fully occupied on Tuesdays with antibody-related work. Adam's bone marrow biopsy was therefore put back to Wednesday. No more leaving early for us then.

After some discussion we decided we would still leaving on Wednesday, albeit later in the afternoon once Adam had fully recovered from the sedation. We rescheduled our Eurotunnel departure for later on Thursday, canceled our hotel booking for Wednesday night in Antwerp and instead booked a room near Dortmund, roughly half distance between Greifswald and Calais. It would mean Adam travelling five hours with his 'holes' on Wednesday afternoon and evening. And it would mean driving five hours to get to Eurotunnel on Thursday, rather than two. But all being well we would arrive home only a few hours later than originally planned.

The rescheduling meant we didn't actually need to go to the hospital on Tuesday at all. We went so that Adam could play Skylanders with Ryan, who was there having an additional round of antibodies. Yep that's right, we took our son to the hospital so he could play with his friend.

I can't remember precisely what time we arrived, but it wasn't early, around lunchtime I think. I had it in my head to find out about the results of Adam's MRI scan while we were there, but there was nobody around to ask. Finally I saw one of the doctors and I asked him whether the results were on the system yet. He went back to his desk on the station and I watched through the glass in the door as he opened up some report, looked at it, studied it more closely, opened up something else, and studied that too. And then he came out to speak to me …

"The final report will not be available until Thursday or Friday, after the radiographers …

What was I thinking at that moment? How did I feel? Honestly, I don't have a clue. It was only two weeks ago, but I can't remember. The only thing that sticks in my mind at all is hearing my own voice sounding shaky as I stood there and queried what he'd just said. The rest is a total blur. I do know that as I asked for the results I wasn't expecting to hear there was a new tumour. That wasn't me being ignorant or flippant; I had always thought that if (when?) it did come back we'd see it spreading in the bones first. Whatever was already lighting up on the MIBG scan would light up more, would light up a wider area. Despite all I'd read, all I'd heard, I wasn't prepared for this. Perhaps you never can be, not really.

We went back to the station and I sat next to him as he brought up the images on the computer screen. He went back through the report. It wasn't that long, maybe two or three paragraphs. And, of course, it was in German. But I could see 'Lymphoma' and the references to the image slides where it could be seen. The mass was 8.9 mm in diameter, in the pelvic plane between the aorta and vena cava inferior. I saw the blood vessels in the image on the screen. And I saw the 'mass' in between. I walked back to Ryan's room. As I entered the doorway Alison looked up at me. I shook my head slowly. She knew.

That night we went back to our rental house. We ate tea, we engaged in small talk. We sat with Adam, we smiled, we made everything out to be normal - our normal, that is. And all the time inside our hearts were breaking.

We knew what this might mean, what this probably did mean. I wanted to go back to the hospital later that same day to talk with one of the senior doctors, with Lode or Einsiedel, but that wouldn't be possible. Think, think, think. The final report wouldn't be produced until Thursday or Friday, right? Perhaps there was a mistake? But I'd seen it with my own eyes. But why did they use the term 'lymphoma'? Does that mean the same in German as in English? If it's a tumour, it can't be anything other than neuroblastoma, can it? Think, think, think. Maybe it was an enlarged lymph node that was missed on the MRI in November? Adam did have diseased lymph nodes when he was diagnosed, and I was sure calcified nodes had been reported on recent CT scans at the Marsden. Yes, they had definitely; part of Adam being classified with stable disease. I remember being surprised one time when this had come up in conversation with his consultant, and having a subsequent conversation about it. Bollocks, no way to confirm for sure; Adam's medical notes are safely tucked away in a filing cabinet back at home in England. But maybe that could be it? Think, think, think. We'd only had one other MRI scan in Germany. Had they compared this MRI with the images from previous CTs, which had been sent over from the Marsden before we began treatment? Damn, I hadn't thought to ask. The doctor had certainly said the report was always a comparison to previous scans, but maybe as it was preliminary it was reporting gross findings? Think, think, think. Maybe, maybe, maybe.

Let's just say I've had more pleasant evenings ... and better night's sleep.

We'd been told Adam would be second up for bone marrow biopsy on Wednesday, around 10:30. We arrived just after 10, but there were some delays and we didn't get called until nearer 11:30. I wanted to get a disc with the MRI images on it to take back to the Royal Marsden. I wanted to speak to Lode or Einsiedel. And I wanted to go home. But first we had to take Adam into the technical room, lie him on the table and watch as Dr Einsiedel administered the drugs to send him to sleep for the bone marrow procedure. Then we had to wait whilst they extracted samples to send off to Vienna for testing. Would they contain neuroblastoma cells too this time round? Was it back in Adam's bone marrow which had seen such heavy involvement at the time of his original diagnosis?

As Adam started to come round from the sedation he had the same slurred speech, and the same double-vision as last time. We were fully prepared for it this time, as was Adam. He was much more aware in real-time of his second experience with ketamine. His conclusion was that it's much better than the anaesthetic he has at the Marsden. I very much doubt they'll start giving him this 'unique dissociative' (Class C) drug in the UK, however.

Once Adam had recovered sufficiently he moved back into Ryan's room and started on breakfast (even though it was now past lunchtime). Sedation (and anaesthesia) requires Adam to be nil-by-mouth of course. We'd got through the morning, and done what we needed to do for Adam's bone marrow procedure, but there was an enormous cloud hanging over us. I wasn't very good company that's for sure. I stepped outside the room intending to track down somebody to talk to about Adam's MRI. Dr Einsiedel strode towards me, disc in hand, "Mr Bird" he said, and led me through the end of the ward to the consulting rooms.

We talked for sometime, half-an-hour, an hour, I honestly don't know. There was no room for doubt, the MRI had shown up a new tumour that certainly was not there on the previous MRI, nor the last two CT scans we'd had done at the Royal Marsden. The shape was consistent with a diseased lymph node, but it wasn't possible to say for certain; it might or might not be. The result was the same in any case. Adam had relapsed, or progressed if you considered he'd never had clear scans in the first place. Whatever you called it mattered not. There was little else that could be said definitively until after the MIBG scan, which would determine the extent of the progression, and therefore guide us in terms of treatment. I was told initially to expect the MIBG to be worse, possibly much worse, and for the disease progression to be more widespread. However, after discussing the specifics of Adam's history this opinion was revised slightly. If it was indeed a more mature, slower growing, type of neuroblastoma it might not be as bad as feared. Only time, and that bloody MIBG scan we should have had done in England before we came out here, would tell.

It was still bad. However you looked at it. It was a bastard. We'd climbed all the way up this enormous friggin' mountain, and now we were in worse shape than when we had been at the bottom of it. In 2011 we'd debated over doing high-dose, and in the end we'd done it. In 2011 we'd um'd and ah'h over antibodies, tried to get on the American trial, had reservations about the German trial, but it had come down to either that or nothing, and in the end we'd done it. For six months we had come and gone, not hoping this would clear Adam of disease. That would be too much, unrealistic. But hoping that it might have some invisible effects, and help him achieve long-term stability. Instead after all of that we had begun 2012 with the worst news imaginable.

We ended the meeting by agreeing that the next step in terms of treatment would depend upon the MIBG scan being done at the Marsden the following week. If, as feared, this turned out to be widespread and aggressive it would need to be treated aggressively as well. If it was more localised re-growth, or at least not so widespread some biological therapy, with limited toxicity would be a better first option to try. And for that America would be our only option. It was a good discussion, honest and open, but without MIBG results it was impossible to draw any firm conclusions. And for those we would have to wait an excruciatingly long ten days.

I returned to the room where Adam was now happily playing Skylanders with Ryan and Berzan, and recounted the conversation I'd just had. I was thinking a bit more clearly now. There was no mistake, no misunderstanding, no doubt. Obviously we couldn't change what had happened, we were just going to have to deal with it as best we could. All of it; the upheaval, the uncertainty, the stress, the decision-making, the treatment whatever it turned out to be, the heartbreak. There really was nothing to be upbeat about, but at the same time as devastating as this was there was no choice but to face it square on. I had almost finished when a question popped into my head, one I hadn't asked but now wanted to know the answer to. Always happens right? You ask a bunch of questions and no sooner is the conversation over than you think of something else you wished you'd asked. I left the room without explanation, and went in search of Dr Einsiedel again. I found him in the corridor on the phone, waited patiently for him to finish and then asked him.

"When we have the MIBG scan, what if nothing shows up?"

He looked at me and simply said "It WILL show up."

We left Greifswald mid-afternoon. Five hours driving ahead of us, and five more the next day. I don't remember much about the journey. It wasn't fun. Adam was comfortable in the back despite his fresh puncture holes. He only complained when we stopped for him to go to the toilet and he had to bend over forwards to tighten his shoes. Even then he was only 'a bit achy.' The hotel was business-like, situated on what Alison perfectly described as Purley Way … and that was even before either of us had seen the Ikea building. We arrived in Epsom late afternoon on Thursday. Happy to be home, to see Jake and Jessica again, to have Adam reunited with his brother and sister. And churned up inside over what lay ahead for us all.

We got through the next week. Somehow. Twenty-four hours at a time. One day after the next. Friday. Saturday. Sunday. I went running. I've got a series of races planned, the first of which was last Sunday, leading up to me attempting to complete a marathon. The intention is (note the present tense, I've not given up just yet) to try and raise some money for the NB Alliance. If Germany hadn't turned out how it did I'd be asking you to donate to our JustGiving page now, but instead your reading this. Anyway I wasn't much in the mood, but I plodded round and it passed some time. Adam went to watch Jake play football. Or rather to roll around in the grass and get himself covered in mud, much like your average eight-year-old might. You'd never have guessed the news we'd just received about him in Germany. Monday. I took the disc of Adam's MRI scan up to the Royal Marsden so it could be loaded on to their system, but it was corrupt and inaccessible so I had to request a replacement be sent. Tuesday. MIBG injection day. Wednesday. MIBG scan. No messing around this time; MIBG SPECT scan which involves imaging at discrete intervals through a full 360 degrees to produce a set of 3-D images that provide depth and location information not available with basic anterior and posterior scans. Thursday. Adam's scans would be reviewed by the MDT (Multidisciplinary Team) at their weekly meeting, and a consensus reached. Friday. Our appointment with Adam's consultant at 1:30 to discuss the results.

I'm not naturally a patient person. I wouldn't say I was impetuous, but I hate to be sitting around doing nothing, only waiting. I had telephone calls I wanted to make. Emails I wanted to send to Doctors in America. Balls I wanted to get rolling. Sure I could research, read papers, do stuff, but I knew I couldn't really get going on anything until we had all the results. I'd get the same response whomever I contacted; we need to wait for the results of the MIBG before making any decisions on what to do next.

And so here we were. Friday. MIBG results. And I didn't want them. Needed them, had to have them, but didn't want them.

Driving to the Marsden, Adam was sat in the rear of the car. There wasn't a lot of smalltalk going on between me and Alison. "Mum" he said all of a sudden "When I first had Cancer I used to just sleep a lot, didn't I?" "But now I can run around all over the place, although I do get out of breath quite quickly."

Alison and I just looked at each other as if to say "Where on earth did that just come from."

In the waiting room Alison and Adam started a game of Giant Connect-4, but no sooner had the first few pieces gone in than our consultant appeared. It was time.

I couldn't quite believe it when we were told us the results of the MIBG. Couldn't quite believe it, but at the same time in truth I wasn't entirely surprised either.

"MIBG is unchanged, still stable disease."

Stable? STABLE? What the …? How can that be? What does that mean? What exactly is showing on the MRI then?

It was undoubtedly the best outcome from the MIBG scan that there could have been. More than we could even have hoped for almost. I don't think either of us had seriously contemplated it being so, certainly we'd never dared utter such thoughts out loud if we had. But as amazing as the news was it didn't give us all the answers. All it gave us was more questions. Different questions. In Germany they had been so adamant about the MRI result. The contrast uptake had proven it beyond doubt. Or so I thought. Now, there definitely was doubt.

We discussed various possibilities. Swollen lymph node caused by something non-sinister, an infection maybe? A malignancy, but not neuroblastoma? Non-MIBG avid neuroblastoma? Nothing quite makes sense. Adam still has lots of MIBG uptake through spine, pelvis, and femurs. For this to be neuroblastoma, but not taking up MIBG and for everything else to be unchanged? Or for this to be some other malignant tumour, but for it to only show up in a single area or lymph node? The only thing for certain was that Adam was proving once again to be anything but conventional. I think that's why I said earlier that although I couldn't quite believe the MIBG results I wasn't entirely surprised either. Adam is … as Adam is.

Obviously the radiographer who studied Adam's scans was aware they were looking for something that would correlate with the suspicious finding on the MRI. But they still didn't have the actual MRI scans to compare directly. I'd asked for discs to be sent to both the Marsden and to me, but it seems only mine had arrived (or maybe only one was sent, I don't know). So this week, now they finally do have a disc the radiographer is going to do something technical with the MRI and MIBG together that might, but in all likelihood won't, add to what we currently know. We've also decided to do a follow-up MRI in two weeks time, meaning a month will have elapsed since the MRI in Germany. This will tell us whether the suspicious mass is still there, and if so whether or not it has grown. So whilst we've pulled back from the brink a little, we are definitely still in limbo.

The day before we got the scan results I had cancelled Adam's next dose of 13-cis-retinoic acid as there was no point continuing it after disease progression. I'd actually been completely freaked out when a few hours after Adam got back from his MIBG scan a member of the administrative staff at the Marsden called me to say he was booked in for chemo at 2pm the next day i.e. Thursday. To say I was flummoxed would be an understatement. It was only after I regained my composure a little and asked for some details that I realised it was an entirely innocent and routine call to remind us that his retinoic acid would be ready to collect as per usual. But after my telling her we wouldn't be needing it, and now it turning out that we would after all, there was a little more waiting around to do whilst blood counts were checked, and the pharmacist authorised the drugs to be dispensed. Adam and I had a game of Giant Connect-4 and this time the mood was a little less sombre. He won. Then he went off to play Action Man with some other boys who were there. They were all younger than Adam so he was enjoying holding court.

As we left the Marsden I thought back to that final question that I asked before leaving Greifswald. What if nothing showed up on the MIBG, then what? It will show up, was the answer. Unequivocal. But it hadn't. So … now what?

Now we wait. For the repeat MRI. Anxious, but not so anxious as before. We still do not have the results of Adam's bone marrow biopsies back from Vienna yet. I haven't been told there is a problem with the samples or the testing, but it's been an unusually long wait this time round. Normally takes a week, and it's now been almost two. I could read something into that I suppose, but I choose not to. There really is no point in trying to second guess where this journey is going to lead us next.

I really did think this was it though. And maybe it still will be. I had everything on standby, the doctors to talk to, the treatment and trials to ask about. I had the charity standing by to support us in whatever we decided to do, and wherever we decided to take Adam for treatment. It really made me appreciate that we have their support, and that we have the money that Adam's Appeal has raised at our disposal whenever, and if ever, we should need to use it. It's also demonstrated to me, if I really needed it demonstrating, that we need as many people as possible to continue supporting Adam's Appeal. Or if people are reluctant to do that because of the money we have already raised then to support the NB Alliance UK directly so they can continue supporting the children they are helping at the moment, and the children that will unfortunately, but undoubtedly, need their help in the future.

To that end I finally finished overhauling Adam's website. I spent a few late evenings (and early mornings) doing it when I thought that by now we'd already be focused on planning when to take Adam to America, what treatment options were open to us, and what to do in terms of our family situation. It gave me something to focus on when I needed something to focus on. In the same way that Alison baked a lot more cakes than usual.

Here is the all new Adam's Appeal website. And you can find out from the NB Alliance UK website about the other children they are helping. If you've got something coming up and are wondering who you could raise a few pounds for, please do consider raising it for them. It really will be money going towards trying to save a child's life ...

'No news is almost certainly good news …' … I mean really, what an idiot. I refuse to say I was tempting fate, because once I go down that particular road there is no telling where I'll end up. And I still stand by most of the other stuff I said. It is time we had some plans, some ideas for the future. Of course whilst knowing it could all change in an instant, and some or all of them could come to nothing. For now though all plans and changes are on hold until we get through this immediate period, and find out what's on the other side. And in future I'll be posting on here whenever I have something to say. And when I don't, I won't.