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 …

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"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.