Friday, 2 December 2011

Meanwhile, back at home …

The trip home was our easiest yet. We had sunshine throughout Monday, so much so that I had to draw the curtains in the back of the van so Adam could see his computer screen properly. He's so comfortable in there, it's like his own portable cinema room. Bench seat all to himself, snack and drinks cupboard right next to him. We were on the road for eight hours on Monday, and in the whole of that time he only asked "When are we there?" once. I praised him for being such a superstar, to which he responded "I just thoroughly enjoy watching my programmes." On Tuesday the good weather continued until we encountered our first rain a little over three miles from home!

It's going to come as something as a shock to Adam when we travel out again in a fortnight's time, and he has to share the back of the van with two other people. The plan next time is to spread the journey over three days, rather than two. That way if the kids get bored and start bickering at each other, we know we won't have to suffer it for so long. The other consideration is the weather; if road conditions turn out to be bad we can take our time knowing that we've only (!) got two hundred and fifty miles or so to drive each day.

On Wednesday our community nurse came to change Adam's bungs and dressing, and take bloods prior to our visit to the Royal Marsden the following day. This time we'd planned ahead, determined that we'd be able to go in, have the pump disconnected, get Adam's line flushed, collect the retinoic acid, and be on our way again without a hitch. Oh no, no, no, no. How could we have even have thought such a thing? Because of our unscheduled pump change last Friday evening, Adam's pump finished sometime during Thursday morning, and so Alison took him earlier than she otherwise would have. Being the seasoned campaigner that she is, she prepared lunch to take with her, and of course it was just as well she did. First off, she got a telling off for not making an appointment. We've just clocked up 6,000 miles travelling back-and-forth to Germany for treatment the UK cannot provide, and Alison get's a ticking off for not phoning up to say she's bringing Adam in to have his pump disconnected and his line flushed. Notwithstanding the fact that our community nurse had telephoned the shared care co-ordinator with Adam's blood results the day before in advance of him going up there. At least Alison doesn't let such things bother her as much as I do.

Then there was the retinoic acid. No, actually there wasn't the retinoic acid. Like the time before, and the time before that, and the time before that, there was no retinoic acid waiting to be collected. This time it wasn't Adam's blood work that was required, nor that he needed to be seen by a doctor. This time he'd already completed six courses, which is the total number according to standard protocol. And there was no authorisation for additional courses. I had previously raised the subject of Adam having a full twelve months of retinoic acid (and by 'raised the subject' I mean I'd sent emails, and had no reply). However, it also forms part of the study we are doing in Germany, so I had assumed whilst we were having immunotherapy there would be no question of it not continuing. I'm pleased to say that once we got the doctors involved it was all sorted out fairly speedily, and what we need to do now is ensure Adam's consultant has signed off the next course before we return in January. However, I think we must accept that we are destined to forever fail in our quest to have the stuff waiting for us when we walk through the door of the hospital.

Adam has been very well since we got back, probably the best he's been after any cycle so far. I can't think of a single outward sign that he's exhibited that would indicate he's just come off treatment. His last two EEGs on this cycle were probably the most worrisome aspect, showing an increased likelihood of seizures. However we've seen no visible sign of anything untoward so far.

We have precisely a fortnight now to sort out Christmas before we start back for Germany again, and as yet we've done nothing. On top of that we seem to be a bit jinxed at the moment. We returned after the third cycle to the news that our fridge/freezer had packed up. This time we've come back to find the heating element in the cooker has blown, the car won't start (can't even jump-start it), and the drainer/waste on the kitchen sink has broken and it doesn't look like it's possible to buy a like-for-like replacement. Doesn't whoever's in charge know we've got enough to do as it is?!?


  1. Have you ever heard of St Jude Cancer Research here in United States? It is a wonderful organization. Please check it out. God Bless little Adam.
    ~Sheri at Red Rose Alley

  2. So sorry, the name of that was St. Jude Children's Research Hospital.
    ~Sheri at Red Rose Alley