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.
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.