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.