The last two weeks have been pretty tough; waiting to find out where things are at after Adam’s bone marrow tests, CT and MIBG scans. I’ve lost count of the number of times we’ve been down this road over the past year-and-a-half, but for some reason this time the purgatory was worse. Or maybe it wasn’t really, maybe it’s simply that every time seems worse than before. It’s being in the moment, filled with fear and uncertainty, versus looking back all-knowingly after the fact. Each and every time the fear gnaws away inside your head saying ‘This time it’s going to be bad. This time the luck’s going to run out.’ I’m sure people that have trodden this road themselves will know what I mean.
This morning we received the results.
Despite all the chemotherapy he’s had; despite two rounds of high-dose radiation therapy, despite high-dose chemotherapy with stem-cell rescue, Adam’s MIBG scan shows the same disease burden he's had for the past year. His scans continue to light up throughout his spine, pelvis and at the top of both femurs. We've been told, more or less, that in all likelihood Adam will never be 'clear' of whatever it is that he has got, and at best whatever it is that lights up on his scans will always be there. Moreover, there is currently no way to determine, other than through the passage of time, what it is. If it’s mature cells he could live with it for many years to come. If Adam is still alive and well in 30 years time we will be able to say with some degree of confidence that it isn’t, and wasn’t, active neuroblastoma. That’s the prospect we are now faced with.
The CT scan of Adam’s abdomen, specifically in the region of his primary tumour, was completely clear. His bone marrow aspirates were also clear. The bone marrow trephines showed a very small percentage of ‘abnormal cells’ on immunological testing. However, their presentation was not consistent with Neuroblastoma, and by all standard measures the results from the trephines are considered clear as well.
Whilst I had hoped everything would somehow miraculously disappear, and as much as I worried that things would show up that weren’t there before, this is the outcome that I very much expected. It means we have to get our heads around the fact that unlike normal cancer patients the ultimate aim of having no evidence of disease is one that we realistically have no possibility of reaching. The goalposts have been moved. At some point we will have to stop treatment and just 'hope' that what's left is not malignant. However, we're not at that stage yet. We’re not even close.
We have begun talking to Adam’s doctors about where we go from here. Our Consultant and Professor Pearson at the Royal Marsden are being supported by experts from other countries. Our most likely next move will be to take Adam to either Germany or America for some form of immunotherapy, and at the same time start him on a course of oral retinoic acid. This does nothing for what lights up on his MIBG scan, it's to try and prevent him relapsing in other areas. It's not beyond the realms of possibility that we will do 6 months in Germany and then transfer to America for 6 months, so that we do two treatments back-to-back. We should have a decision in the next couple of weeks, with treatment starting sometime in May.
In one sense this is an odd update. Normally I have little difficulty with the tone of what I’m writing. I mean I have no idea how it comes across to other people, but (knowing what it is that I’m trying to say) it’s usually clear to me when I look at it. Reading back what I’ve just written I don’t get that. Is this good news? Is it bad news? Well, it’s good and bad news really. Most of it is what, deep down, I expected to be writing. Our most optimistic forward forecast is that we have at least another six to twelve months of difficult times ahead, emotionally, practically and logistically followed by a lifetime of uncertainty. At the same time we’re ever thankful that we have our middle-sized boy still with us, and that at least we do retain some hope for the future when many others do not. Immunotherapy is no walk-in-the-park, intense pain, dangerously low blood pressure, hives, severe fluid retention - all manner of side-effects can, and more often than not do, occur. At the same time Adam has tolerated a multitude of treatments to date remarkably well, with a courage and maturity that belies his years. So it’s a mixed bag I suppose; there are both positives and negatives to be found depending where you look.
Flat - that probably sums it up best.