Sunshine ...

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

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

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

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

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

And so it goes on … and on ...

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

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

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

And so it goes on ...

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

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

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

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

Yes we have plans ...

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

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

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

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

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

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

Antwerpen

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

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

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

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

If in doubt … ask …

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

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

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

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

Thinking, always thinking …

My mind works in mysterious ways sometimes.

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

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

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

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

Normal service resumed …

Yesterday was a much better day, and today has continued in the same vain. The intense redness has dissipated, the puffy eyes have gone, and Adam has resumed his normal inpatient duties. Namely, sitting in bed watching kids TV, interspersed with an occasional period of play on the Nintendo DS, or stroll down the corridor to the playroom; basically he’s waiting until it’s time to get discharged – which we are hoping will be Saturday. If he remains like this I see no reason why not (remind me again, what was I saying in my previous post?). Once the antibody is transferred to the portable infusion pump sometime Saturday afternoon the plan is to return to the rental house. Then we’ll come back for final blood work, and discharge letter, on Monday morning.I asked the doctor about the reaction that Adam had on Monday, presumably  to the antibodies given the timing of it. His response was one that will resonate with most families going through this treatment; we’ve all heard it at various times.

 

“Yes. We have seen it before, but we don’t know why it happens.”

 

“Why this time round, and nothing during cycles one and two?”

 

“We cannot say.” As in we haven’t got a clue, rather than I know but I can’t tell you.

 

At the moment everything is pretty much the same as it was during the second cycle. Adam is eating well, he has no pain, no fever, no cough, no hives, no fluid retention or weight gain. His sleep is broken by the noise, and comings and goings on the ward, but in the big scheme of things it’s not important.

 

We are waiting to hear precisely what scans Adam will be having at the end of October / start of November before he starts cycle four, as I want the Marsden to repeat some of the additional investigations that we did over the summer, before we started. These re-staging results will determine whether or not we can complete the full five cycles of antibody treatment.

 

I also heard back from Department of Health today regarding NHS Surrey’s refusal to fund Adam’s treatment. They basically repeated everything they’ve already said, without offering any potential solution for taking things forward. They don’t want to get involved, except to offer their sympathies, and some pious nonsense about wanting to improve survival chances for every child with neuroblastoma. Each new family from the UK that we’ve met here has had their treatment funded, and that makes the situation all the more galling. So we carry on fighting until somebody is big enough to stand in front of me and tell me precisely why my son is less deserving of his country’s support.

You know nothing ...

You think you know. You've seen enough over these past two years and four months to know. You are a seasoned campaigner. You pick up the patterns, you get a sense for how things will be. That's how you know.

Wrong.

You know nothing.

Round two of antibodies was a breeze for Adam. Neurontin instead of Morphine. Easy.

Round three will be more of the same then. Or maybe even easier still.

Wrong.

This is Adam after four hours of antibodies, two of which he had been completely zonked out for. I wish I had a photo from the morning, or yesterday, that you could compare.

He's had fever most of the afternoon and evening. And he is VERY red and puffy. I must have checked at least three times that they haven't put Morphine in his Novalgin syringe driver. It definitely says Novalgin on the syringe, but still.

Anyway, we'll see what tomorrow brings ... I have no idea. Honestly, I know nothing.

Oops I did it again ...

Now what is the title of that really annoying Britney song? That's the one - 'Oops I did it again'. Well it appears that oops I did it again; the 'it' being showing wilful neglect where updating this site is concerned.

When you were last with us our intrepid hero had returned from Germany quite fit and well, and had gone off to Junior school to see what normal boys his age do with their weekdays. He found he quite liked some of the activities; education is what I think he called it. In total he managed ten consecutive days at his appointed place of learning, and towards the end of those ten days he was going into school at the start of first break, and coming out at the end of the day along with everybody else.

On Friday night his school tie was folded away, his school bag shoved into a quiet corner to gather dust, and he prepared himself for another voyage into the land of the antibody therapy...

The journey was our best yet. Getting to the hotel near Eindhoven was straightforward on Saturday, and on Sunday we bombed it through Holland and Germany, arriving in Greifswald just after 5pm. Apart from a fifteen minute hold-up due to some bridge repairs it really was plain sailing.

Our sleeping arrangements on Saturday night at the Hotel Nobis weren't as good as last time, or to be more precise my sleeping arrangement (singular). Whereas on our previous visit we had been given a triple room (one double, one single), on this occasion we ended up in a twin room with two single beds pushed together. When booking the hotel (it's a Best Western) it does say children under 11 go free in existing bedding. And they sure do. The go free-ly all over the place. I started sleeping in the middle, on the gap. A gap which grew steadily wider until there was more of me unsupported than actually in contact with any part of either bed. As my options dwindled to (1) levitation, (2) falling to the floor, or (3) getting out and going elsewhere I decided that with Adam closing in on the centre of one bed the smart move would be to go round and squeeze in the other side of him. Which was fine. In theory. And for about ten minutes. Adam, no doubt sensing a disturbance in the force, decided to shuffle himself slowly, but surely, back towards the other side of the bed. Now he is 25 kilos, and I'm 75, but that didn't stop his progress one iota. Eventually my options dwindled to (1) levitation, (2) falling to the floor, or (3) getting out and going elsewhere. You get the picture ... let's just say my night's sleep was not the most restful one I've ever had.

Our rental house in Greifswald is really very nice indeed. It does have a train line running across the back of it which is a little noisy at times (and this coming from somebody who lives in a house with a railway line at the back of their own garden). But apart from that it's perfect, almost; it's got everything we need, and the decor, furnishings, kitchen and bathroom are faultless. The only thing missing is a broadband connection. We are internet-less, and I'm finding it tough. Not least because I can't work at all. Even the hospital network has changed somehow between this cycle and the last - I can't connect to my office network from there either. We think the house was lived in and then rented out, rather than purchased as a rental property. The people we are renting from seem really nice, and have been very easy to deal with (we communicate via google translate). We've already asked them to provisionally book the house for us for cycles four and five - though we cannot know until after Adam's next set of scans whether or not we will complete the full five cycles of the antibody treatment.

We have just completed the first week of treatment; five days of IL-2 injections. Adam's legs look more and more of a mess with all the scars, bruises and swellings from the 25 (or rather 26, but we'll come on to that later) needles he's had so far. He still has visible lumps where he had injections during rounds one and two. They feel horrible, but he'll tell you they don't hurt at all whilst at the same time punching them just to prove the point. The recent injection sites are an entirely different matter, you so much as touch those and he'll scream the house down. It's been a week that has not been altogether stress-free, or without incident. It started off well enough; Adam was re-united with little Ryan, who is undoubtedly the best hospital buddy he's ever had. It makes us all laugh to watch the two of them together; playing on the Nintendo Wii, or talking nonsense, or having a quick cuddle when one or other of them is feeling a bit off. It's like they've known each other for years, rather than just a couple of months. As a result we've spent far longer in the hospital this week than we've needed too, but it's fine. For us, it's all about Adam - and there's no doubt where he'd rather be spending the majority of his time!

Things took their first downturn when it was time for Adam's injection on Monday morning. Dr Lange was not around so it fell to a new junior doctor to perform the task. Unfortunately my instructions were slightly misinterpreted, so when I said "I take the gauze, Adam has the plaster, you have the needle; we say 1-2-3 and bang, injection in and out, I apply pressure with the gauze, Adam puts the plaster on. Job done' my use of 'we' instead of 'I' (trying to be inclusive) proved to be highly significant. I took the gauze - check. Adam took the plaster - check. Doctor took the needle - check. And then, in the same instant, Doctor said 1, 2, 3 plunged the needle in, did the injection ... and Adam screamed. His head. Off. "NOOOOOO!!!!!! I WASN'T READY!!!!!! YOU DID IT WRONG!!!! YOU'RE NOT SUPPOSED TO SAY THAT!!!!!"

On Tuesday it went from bad to worse. Doctor America (as Ryan calls him) did the injection, and it wasn't too bad. Adam's opinion of his handy-work wasn't as high as Ryan's (where he's gone straight to the top of the class), but it was better than the day before. Until, that is, a contrite Doctor America came to tell me that he'd done Adam's injection with the wrong syringe, with too little IL-2 in it, and we needed to do another in the same place. I told Adam. Not surprisingly he went absolutely ballistic, and shouted the place down for the second day in succession. I told him there was no choice in the matter; what did we need to do in order to get it done? He told me Dr Lange (who was in a meeting with Prof. Lode and some of the nurses at the time) had to do it, or it wasn't happening. So that's what we did, I interrupted the meeting, an even more contrite Doctor America had to explain what had happened, Dr Lange came out, and we got it done (hence the 26 needles referred to earlier). That's the thing with Adam. You can reason with him about almost anything; but you have to let him find the solution to the problem himself, to give him a bit of time, and a bit of control, to arrive at a resolution that he finds acceptable.

Needless to say that on Wednesday Dr Lange did the injection. Three strikes and I think Adam would have refused to set foot in the place on Thursday.

The side-effects from the IL-2 have been strangely more severe this time round than during the same week on the previous cycle. It was the same with Ryan. We had to give Adam paracetamol on Weds, Thurs and again today, after he spiked a fever in the middle of the afternoon. He's felt nauseous too, and rounded the week off by actually being sick today. However, he has slept well each night, and been perfectly fine again by the following morning. He's eaten a good breakfast every day, lunch has been hit-and-miss, but dinner has generally been good. We've largely ignored the times by which we are supposed to get to the hospital in the mornings; 8:00-8:30 Mon/Wed/Fri (when they take bloods as well), and 9:00-9:30 Tue/Thurs. Instead we've let Adam sleep as long as he wants/needs, and then do the normal morning routine, including having breakfast before we set off. It means we've tended to arrive sometime after 10am, but as far as we're concerned it's better for Adam that way. So that means it's better full-stop.

Even though we've had a few hiccups this week they're nothing compared to the last couple of days that Ryan and his family have had. Yesterday a member of the medical staff (who shall remain nameless) burst one of his central lines in the process of trying to unblock it. As it was an external breach, a repair kit was sent by special delivery overnight to the hospital. Had the line ruptured internally it would have been much more serious, but as it was Ryan had to sleep with a pair of clamping scissors securing his line. They did the repair this morning, but within minutes of returning to his room Ryan's temperature and heart-rate both started to rocket. Despite which Adam and Ryan (shivering and with chattering teeth) carried on playing the Wii, largely oblivious to the unfolding drama! It was at this point that Adam began to feel unwell himself (which eventually led to him being sick), so it was a good time for us to leave and let everybody else get on with what they needed to do. Things are fine again now, and we're hoping it was an IL-2 induced fever exacerbated by everything else that went on, rather than an infection resulting from the line breach. Fingers crossed. Anyway, it has made Adam's vampire bite (as he referred to his double injection) seem rather trivial in comparison.

Nothing much to report ...

All quiet on the Adamski front. Nothing much to report. He went into school for a couple of hours everyday last week, and the plan is for him to do the same this. He stayed for lunch a couple of days but the weather has been too hot for him - I wouldn't have believed I would be saying that heading out of September and into October. He feels the heat and with the 13-cis-RA he's taking his skin is very sensitive, and burns easily. So after spending one particular lunch break sitting in the shade, away from his friends who were playing football, he decided he might as well come home at the start of lunchtime rather than the end.

Last Tuesday Alison picked him up out of school and the two of them went to Chessington for a few hours. This term was always going to be a write-off academically, so any time he does spend at school maintaining the social contact and getting to know the staff is a bonus. I don't think many people would begrudge him swapping his classroom for the skyride and bubble-works for a couple of hours, given everything else he has to contend with.

We went to the caravan over the weekend. Last time we were there after cycle one we were taking Adam around in his pushchair, when he wasn't lying prone on the sofa. He did get out and walk one time when we went down to the seafront; he managed about twenty yards before he was wiped out. This time round he was out on his cycle, and getting back towards where he was before we started out on this German adventure of ours.

Having heard nothing from the Marsden about the repeat testing of Adam's blood requested by Germany we assumed they haven't heard anything further from the doctors in Greifswald. Consequently we didn't bother taking Adam up to the hospital again today, which nobody here was complaining about. We'll be keeping quiet whilst we're out there as well; if it means two fewer visits to the hospital each time I'm only to happy to play dumb (for once!).

We head back out on Saturday to begin road-trip number three. After the problems with the Elternhaus on our last visit we have a rental house to stay in this time round. It's more expensive, but it's so much better for Adam than if we were to end up in a hotel or guesthouse. Ironically we were told on Friday that there would be a room at the Elternhaus for us this time round for the full two weeks. The problem is, if we pulled out of the house rental now we couldn't expect them to engage with us in the future, and there is only a limited amount of private short-term rental accommodation available in the area. Ryan's parents, who started round three this week, also booked an apartment after seeing the trouble we had. They were very glad they did as there wouldn't have been a room for them at the Elternhaus. So we know there may not be rooms for rounds four and five, and we need that certainty. We got lucky last time, we're not prepared to take that chance again in future if we can avoid it.

Before I sign-off here is a photo of Adam off out on his bike on Saturday ...