Adam’s scan results have come back unchanged. Bone marrow aspirates and trephines clear, CT clear, mIBG remains littered with diffuse abnormal uptake. You might say it’s good news, but I still can’t bring myself to equate clear evidence of disease, which is what it almost always is (even though we keep being told that it might not be), with good news. So instead I think of it as not bad news. I was hoping for not bad news, and it wasn’t bad news. So in that sense you could even say it was good.
We start immunotherapy* next Monday, 1st August. We are travelling by road so I’ve just purchased a £500 frequent traveller account with Eurotunnel that entitles us to ten bookings anytime in the next twelve months. As this will be the first cycle of antibody therapy* both Alison and I will take Adam to Germany; leaving Jake and Jessica for the second time in three years to spend the majority of their summer holiday being looked after by grandparents. Not that there’s anything wrong with that per se, and we’d be in far greater difficulty were it not for the unyielding support of our families. But it’s not how it should be, nor how it need be.
It does piss me off that we are having to travel to Germany for this treatment. Ironically as I’m typing my attention is taken away to a Cancer Research UK advert on the television – they can take a hike too. Far too much power and influence; ‘the system’ has undoubtedly let Adam down, it’s let his brother and sister down, it’s let us all down. The saddest thing of all is that he’s one of many. We’re going, despite it being a complete pain in the arse, because we’ve decided it’s the best thing to do for Adam at this moment in time. I was going to say we don’t have a choice, but technically I suppose that’s not true. Maybe I should just calm down and ask myself if I’d have the same view if we lived on the West Coast of America and had to travel to New York for treatment. And then I might stop getting delusional about what the UK is, or should aspire to be.
NHS Surrey have responded back again regarding our funding application. It doesn’t appear to be positive news, but I haven’t actually seen the letter myself yet so I don’t know any details. It doesn’t surprise. It does piss me off, but it doesn’t surprise me. I am determined to make them meet their responsibilities – we didn’t raise funds in an appeal to pay for treatment that (1) should be available in the UK by now, and (2) has been agreed in parliament should be paid for by the NHS in Germany until it’s available in the UK. I don’t care what NHS Surrey’s rulebook says, or how bad their finances are, the decision should not be based on where we live, Adam is just as much a citizen of this country as all the other children who have been to Germany and had their treatment paid for by the NHS.
In short, we’re off … and in case it’s not very clear … I’m not in a very good mood!
* antibody therapy and immunotherapy are the same treatment.