So, this is the update that I intended to write when I began the last one. I guess I just had to get all that other stuff out of my system first. Look at it this way; that was the rant, this is the ramble.
In between all that other nonsense, talking to journalists, doing radio interviews and the like, we also made plans for our last scheduled visit to Greifswald for antibody therapy. We have one more trip at the end of January to make for end-of-treatment scans, but this is Adam's fifth and final cycle of antibodies. It's not inconceivable that we'll be back again later next year, as there is a chance we might be able to access treatment from America via Germany. Trying to get it through the UK is almost certainly a non-starter, but getting it from America to Germany, and then from Germany to UK (in the back of my van) is a more realistic possibility. Anyway, more of that another day, it's a work in (early) progress.
From the moment we realised we'd be out here for Christmas and New Year we had always planned on bringing Jake and Jessica out as well to spend the festive season together as a family. Perhaps if Adam had not tolerated treatment so well (the morphine wracked first cycle excepted) we might have thought differently. As it was we were faced not merely with repeating our preparation and packing as per previous cycles, but also the addition of two extra people and the small matter of Christmas to contend with whilst we were out here.
The mere fact that we are here, Adam has just completed the first week of IL-2 injections, and we are set fair for the coming weekend is a clear indication that we managed to successfully make the journey. Things, however, didn't necessarily start off that well. We made a strategic decision to bring as much stuff as we could for the kids to make things as comfortable and normal as possible for them. Lest anybody should forget we are, after all, spending two weeks with Adam going through cancer treatment. This isn't, as Jake keeps pointing out to his mates, much like a real holiday. You can hope treatment runs smoothly, you can even anticipate it's more likely than not to run smoothly based on previous experience, but what you most certainly cannot do, unless you are an über Dummkopf, is bank on it being so. So we decided to bring a lot of stuff. And having made the decision to bring a lot of stuff we had to figure out how to transport it all down to Folkestone, across France, Belgium, Holland, and most of Germany to Greifswald. So we bought a bike rack and luggage box for the camper van. So far, so good.
Here's where my pre-occupation with media matters began to have adverse consequences elsewhere. Our Eurotunnel train across to France was booked for 4.20pm on Friday. The kids had stayed off school Friday morning, the plan being to have lunch and then set off around 2pm. At 10am said bike rack and luggage box were still sat in our hallway in their respective cardboard boxes. At 10:30am said bike rack and luggage box were out of their cardboard boxes and sat in the garage, in several pieces, together with nuts, bolts, brackets and fittings.
Oh. Dear. Me. Perhaps in hindsight it was unwise of me to have ignored everything for the previous three or four evenings.
At 3.30pm Jessica waved hello to her friend as she walked home from school past our house. At 4pm Alison called Eurotunnel and re-booked us on to the 7.20pm train. We departed on the 8.45pm.
We stayed overnight in Antwerp on Friday, so a couple of hours drive from Calais. We booked two rooms, which were kindly split between the 2nd and 4th floors, not ultra convenient when you're sharing a single overnight suitcase. Some consequence of having to put the names of separate adults on the room bookings I think. But it was late, it had been a very long day, and I was horribly grumpy. So to say I was not overly pleased to be told the hotel was full so there was nothing they could do, might be an understatement. "We're coming back on 3rd January, don't do it again" I barked at the guy behind reception as I stomped off to the lift. He probably thought 'Miserable *beep*, 2nd and 8th floor for you next time', so we'll see where we end up.
On Saturday morning after breakfast we took a cab into Antwerp and had a walk around. Our cab driver was an amiable fellow, and joined in with our conversation to tell us he used to drive lorries across England and Ireland. In fact he once got a bit lost in an articulated lorry and ended up 100 yards from Piccadilly Circus, requiring a police escort out of the city. The thought did cross my mind that maybe that's why he now drove cabs around Antwerp, but I kept it firmly to myself.
Antwerp was like one big building site, the main street we were on is being dug up from one end to the other, and I don't think we really saw it in its best light. We lunched at Wagamama, which is a firm favourite with all our kids, and then went back to the hotel to begin the second stage of our drive, from Antwerp to Bremen.
Another strategic decision we made was to spread the journey over three days, instead of two. We did so for a couple of reasons; the first being that we don't know quite how comfortable it would be travelling with five in the camper van instead of three, and the second being we didn't want to embark on a seven hour drive and then be faced with atrocious driving conditions that doubled our travelling time. Having not left until mid-afternoon it wasn't early by the time we arrived at the hotel in Bremen, but it wasn't as late as the night before. I'd booked the privately run hotel we were staying at online, and we entered through a side entrance to the bar area to be greeted by people eating, drinking … and smoking. I thought I'd gone back in time. Turns out after consulting the all-knowing Google that the law varies across Germany and in any case is not strictly enforced. I was nearly asphyxiated in the time it took to walk the thirty feet through to the main reception!
After a rather inauspicious start the rooms themselves proved to be much more satisfactory. And by that I mean they were lovely, all freshly, and very tastefully, furnished. We were up on the third floor and while there was a faint aroma in the corridor as a result of what was going on elsewhere, the rooms themselves were absolutely fine. Similarly the restaurant where we had breakfast the next morning was also a smoke-free zone and, probably because the door was kept closed at all times, didn't even have that stale lingering smell that comes with being in and around smokers, and smoking areas.
We decided to leave Bremen straight after breakfast, and as we checked-out to leave it began to snow … hard. Not too far up the road we entered a real snowstorm, with low visibility and traffic confined mainly to a single lane. For about an hour it became a procession, conducted at around 40km/h. Just as we thought it was going to be a very long journey, the skies brightened and we drove out of the snow and into perfect driving conditions which continued all the way to Greifswald.
So we made it in reasonable time and the children have all made themselves quite comfortable here at the house. Having the three of them in the same room was never going to be ideal, but once they've settled down at night (a process that takes far longer than normal) they are sleeping soundly until morning. Both Jake & Jessica have been going to the hospital with Adam in the morning, and actually it's quite nice for them to see precisely what Adam has been doing out here these past months. On Wednesday we woke to several centimetres of snow, and during the latter part of the morning we went out into the grounds of the hospital, together with Ryan and his family, for a big snowball fight. Other than that day the weather has been reasonably mild here for this time of year.
In terms of treatment the first week has been an absolute breeze for Adam. He's had five IL-2 injections, an EEG, and three lots of blood work. We gave him anti-sickness for the latter part of the week as nausea has been the main side-effect during the previous couple of rounds. Apart from that, and the big red welts on both thighs, you wouldn't know anything was going on. He hasn't needed any paracetamol, the highest temperate we've recorded has been 37.1 and has had nothing remotely approaching a fever. In the evenings he's not been tired. When we've been out into town, or at the shopping centre, he's not complained that his legs or feet are aching. It still surprises us, given other reactions that he is like this, even on the fifth cycle.
We go into hospital on Monday to began antibodies themselves. This time Adam will be fitted with a portable pump from the off, and the doctors have agreed to start him on oral support meds and see if he copes without the need for IVs. If everything is fine we are free to leave he hospital and return to the house whenever we want, including later on Monday itself. Effectively that would make Adam the first child to have the treatment without any inpatient stay at all. Given this study has been running for more than a year-and-a-half that is not insignificant, so we are quite prepared to stay if we need to, and also transfer Adam back on to the IV pumps if it becomes apparent he's not coping well enough without. If we don't need to sleep at the hospital, and we don't need IV support, it will clearly be better for us to all be together at home next week, and it will also advance the study here as it will enable children similar to Adam to spend less time in hospital in the future.
I'm conscious of the fact that since the first cycle when Adam really wasn't very well at all my posts may give the impression that immunotherapy is a relatively innocuous treatment. The truth is that it's anything but. I have no idea why Adam has the response, or rather lack of response, that he does. I've no idea whether, from an effectiveness point of view, it means anything and nor do the doctors. Just last week a little boy on his first cycle suffered fluid build up around his spine, something they've never seen here before, and as a result is currently paralysed from the waist down. There's no rhyme nor reason to it, that could just as easily have been Adam, or any one of the other children who have been through this treatment. There is no predictor that tells you this will be okay for your child, but this won't. So far we've been lucky I guess, though we do know from Adam's EEGs that he is now classified as at an increased risk of seizures following the immunotherapy treatment he's had so far. All we can do is hope it doesn't happen, and increased risk remains just that, and nothing more.
This week has also been a harsh reminder, as if any of us needed reminding, just how cruel and unpredictable this disease can be. Other families on treatment here with us have received bad news, and now face added uncertainties through the Christmas & New Year period. None of these children deserve any of this. It's odd but even though we're in a foreign land we've probably grown to know people more during this period of Adam's treatment than any other since Rapid COJEC, the initial 80 day induction chemotherapy. Because Adam failed induction and carried on with more chemo whilst others progressed along the standard protocol, our paths stopped crossing with families at the hospital. We also went off to UCLH twice for MIBG therapy because the Marsden was undergoing building works. Whilst we remained in contact with other families we didn't actually see that much of them. Out here, being on the identical treatment schedule for six months, you see the same families time after time.
We will be enjoying our family Christmas together this year, and hoping to make it as special as possible for are own children, knowing only too well that we can neither predict where, nor how, we will be in twelve months time. But we will also be thinking of others too, when our kids aren't watching, when we haven't got our 'everything is fine and dandy' faces on.
It only remains for me to thank everybody who has read my drivel this year, kept Adam in their thoughts, and supported our appeal with both words and deeds.
Wishing you all a very Merry Christmas and a happy, but most of all healthy, New Year.
Nick, Alison, Jake, Jessica & ADAM!