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.