Hat-trick ...

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

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

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

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

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

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

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

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

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

You are by this point hopefully detecting a theme?

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

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

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

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

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

Antibodies (Part Two)

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

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

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

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

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

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

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

Bye for now, talk again soon.

Antibodies (Part One) …

A Lesson

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

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

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

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

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

The MRI

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

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

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

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

"I get Dr Lange."

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

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

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

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

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

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

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

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

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

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

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

The Bone Marrow

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

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

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

No news isn't bad news ...

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

Off ...

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

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

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

EIGHT Tomorrow …

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

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

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

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

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

Five Beautiful Little Words ...

"Stable disease, no new lesions."

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

I know - I'm a crazy man.

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

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

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

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

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

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

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

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

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

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

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

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

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

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