Onwards and eastwards ...

Howdy folks!

Adam is doing okay at the moment. He's off the retinoic acid for a couple of weeks and the skin peeling is only minor now, although there's still a little bit affecting his hands and feet. He's been going into school each afternoon and is really enjoying it. It wouldn't be practical for him to go in for any longer as he spends the entire morning alternating between eating and taking supplements! He goes in after lunchtime and leaves along with everybody else and that's working very well at the moment. There are certainly no ill-effects from it that we've noticed.

Adam’s MRI scan came back clear. Nothing showing whatsoever. Last Thursday the Marsden/St George’s joint tumour board discussed Adam at their weekly meeting. The definitive view was that there is nothing visible in any of the scans that would be suitable for biopsy. Just to recap:

• MIBG scan has extensive diffuse uptake in spine, pelvis, and femurs. Classification is stable disease, no change since the previous scans. There are no well-defined lesions, no actual solid tumours. Just lots of little tiny bits of disease. Lots. :-(
• CT scan is clear. :-)
• Bi-lateral bone-marrow aspirates are clear. :-)
• Bi-lateral bone-marrow trephines are clear for all standard and acknowledged tests for neuroblastoma. However, about 1% of the cells are ‘abnormal’ based on particular immunological testing. The significance of this result in unknown, but it’s not neuroblastoma. :-/
• FDG-PET scan is clear. :-)
• Gallium Octreotide scan is clear apart from some faint uptake in the right femur. However, the uptake does not correlate completely with what lights up in the same area on the MIBG scan. :-/
• MRI scan of left pelvis/hip/femur is clear. :-)

Add it all up and it means there isn’t anywhere for them to go in and do a biopsy, and the consequence of that is we cannot enrol Adam on the U.S. hu14.18 antibody trial as we had hoped to. Instead we are waiting for a date when we can start treatment in Germany. Now we have settled on a course of action the sooner we get started the better as far as I’m concerned.

So in the next few weeks we will be joining the ever growing list of UK families having to travel abroad for treatment this country is not capable of providing. Regardless of who you know, what you know, or how much money you have at your disposal there is so much that is not accessible in the UK at the moment. Sure the vast majority of it is experimental, but it is also an indisputable truth that some of yesterday's experimental treatments are today's standard of care. In many cases these early phase clinical trials give hope to families that would otherwise have none, and for some they do make the ultimate difference, prolonging life, or even leading to remission, or long-term stable disease. The only way for UK parents to access any of them right now is to take their child to a foreign country; splitting families up for long periods in the process, and heaping even more stress and anxiety into lives that are already difficult enough.

But what choice do we have? We just have to get on and do whatever's necessary. In many respects we are among the lucky ones; we know there is more out there than the UK has to offer. Believe me I have seen the look of utter disbelief in people’s faces who simply had no idea. Who, in blissful ignorance, honestly believed there was nothing over and above that which was available at the leading hospitals in the UK. I remember one day Adam innocently telling people seated round the colouring table in the playroom at the Royal Marsden that he was going to hospital in America for 6 months (this is back when we originally thought that’s where we would end up taking him). The incredulity of one poor chap in particular – he came into the parents room and asked me “What’s all this about going to America for treatment? Why do you need to do that?” He literally had no idea, it had never occurred to him. Then again I guess I was exactly the same before this whole nightmare began. I was just fortunate to meet some people (early enough) along the way who helped enlighten me. Without them I’d probably still be none the wiser; and Adam’s Appeal certainly wouldn't exist.

The trial that Adam will be on in Germany is a pre-cursor for a second antibody trial that will be opening in the UK, one that is all-inclusive to those who fail the eligibility criteria for the original trial. This second trial was conceived around this time last year, when the first child in the UK failed to reach high-dose within nine months of diagnosis and was therefore told they couldn't have the antibody in the UK. They ended up going to Germany and set the precedent for similar children to follow. One year on and the second UK antibody trial still hasn't opened. The last I heard, which was a few weeks ago, there wasn't even a date for when it would be open. It's easy to cast blame, point the finger, or shoot the messenger. I don't know why things are like they are in this country, but what I do know is we need to do so much better by our children.

Getting back to practical matters; Adam's treatment will be conducted in Greifswald (indicated on the map below) a town in northeastern Germany. It doesn't matter what mode of transport you choose there is no easy or quick way to get there.

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We are determined to maintain, as much as we can, an environment that is as close as possible to home. This means eating the same foods, taking the same supplements, having the same routine. It also means avoiding the same things. If Adam's appetite wains, if his habits change, we want it to be solely because of the treatment, not because of anything else. We know that's only going to make our lives more difficult, but we are totally committed to it. We'll be driving there for starters; a journey that takes somewhere in the region of a 16-hours.

The antibody treatment itself is no walk-in-the-park. Nothing ever is with neuroblastoma. It is, after all, one of the most difficult to treat of all childhood cancers. Using the experience of others as a guide, the first couple of rounds are likely to be the worst. There are some side-effects that are inevitable; loss of appetite, pain, fluid retention. And then there other far more serious, even life-threatening, complications. We simply won't know how well Adam will tolerate the treatment until we get started (and I'm sure it's not the first time I've said that on here). The schedule is roughly 2.5 weeks in Germany then 2.5 weeks back at home, repeating for 5 cycles.

Our doctors have already cautioned us that if Adam starts to become seriously unwell due the antibodies the best thing would be to lower the dosage, and ultimately to stop completely. We don't even know for certain that Adam needs this treatment. We think he does, the balance of probability is overwhelmingly that he does. But we don't know for certain. As it was put to us bluntly, but honestly, 'we don't want to kill Adam by giving him lots of treatments that he might not even need.' We are putting Adam through immunotherapy because we perceive the risk of doing nothing right now outweighs the risks associated with the treatment. It's not a very scientific assessment I know, but it's the best we've got. Honestly, I'm still not sure if we're doing the right thing. But neither would I be if we were doing something different. Or if we were doing nothing at all. I don't think I ever will be. For want of a more eloquent means of expression, it does my bloody head in.

To end on a lighter note there is one final piece of exciting news … as you can just about see from the photo, Adam's hair is really starting to grow back again now! Another week or two at this rate and he'll have some quite decent coverage. Not that he seems altogether bothered about it mind. He couldn't really give two hoots about being bald anymore.