Friday, 14 October 2011

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.

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