To ask or not to ask ...

Adam's bone marrow results from Vienna have come back negative for neuroblastoma cells. However, as we've now come to expect it wasn't quite that straightforward. Though the answer is definitive, the process by which we got it wasn't an entirely smooth one.

Normally I'm not the type who goes chasing down their consultant for scan or test results before they're due. If I know Adam is being scanned on Tuesday/Wednesday, and the images reviewed in the multidisciplinary team meeting on Thursday I'm content ('happy' isn't quite the right word) to wait for our scheduled appointment at which we can get the full picture, a consensus option, and discuss on that basis.

Doing scans and bone marrow tests in Germany has completely screwed me up in this regard. First off there was the MRI. I wanted to get the results of that before we left for home, and we know what happened there. Then there was the bone marrow results from Vienna. Taking much much longer than last time. Was something amiss? A backlog at the lab? Nobody from Greifswald chasing for an answer? I'm sitting 800 miles away asking myself all these questions, and the more basic question … to ask or not to ask?

Having been told that Adam's bone marrow samples that were sent to Cologne tested for negative for GD2 I was actually fairly relaxed about the results from Vienna, but all the same we needed to get confirmation. It couldn't simply be left hanging. I'd asked before during the course of the back-and-forth surrounding Adam's MRI scan, and been told they were still not back. But when I emailed last Wednesday the response this time was different. The consultant in Greifswald had called Vienna and been told that 'suspicious cells' had shown up in the bone marrow samples, so they were moving on to a more specific testing procedure using only that subset of cells. They'd have an answer by the start of this week.

Why wasn't anything ever simple? Three weeks after Adam's bone marrow had been taken I was now being told they'd found suspicious cells, but that it would be several days and not until after the coming weekend before we knew what the situation was. Honestly, I think our greatest achievement through all this has been that we haven't been reduced to quivering wrecks long before now.

I won't say I wasn't worried, because that would be an outright lie. It doesn't matter that I've learned a lot over these past two years, nor that I can look at things these days quite objectively. Adam is my son and therefore it's impossible to stop the fear in my heart prevailing over the rationale in my brain. There were two perfectly plausible explanations for what I'd been told. One was that tumour cells had been found in Adam's bone marrow, the other was that they hadn't.

I could rationalise that the most probable explanation was the latter. Think about it. The tests from Cologne had come back negative. We'd had abnormal cells show up a year ago in Adam's bone marrow samples analysed by the Royal Marsden. After the third round of antibodies, bone marrow results from Cologne identified 'crests of suspicious cells' and yet neither they, nor Vienna, had found any actual tumour cells. So it wasn't as though we hadn't seen something like this before.

All the same though, it didn't necessarily mean the outcome this time would be the same. And it's that which gnaws at you, that which starts to haunt you when the house is quiet and you've time to dwell upon it.

Almost all neuroblastoma cells express something called GD2 on their cell surface. The way they test these cells is to stain the samples with a fluorescence tagged anti-GD2 antibody. The idea is that the antibodies will adhere to those cells expressing GD2 i.e. neuroblastoma cells and the fluorescence will them make them identifiable. In the lab in Vienna they use a machine that automatically scans for such a signal, making it able to detect something in the order of 1 GD2 positive cell amongst 1 million normal cells. It is really sensitive.

The thing with this technique is that it's possible for other cells to express GD2, though not so uniformly as neuroblastoma. It's also possible that the staining process leaves residue which subsequently lights up on examination. Because the testing done in Vienna is so sensitive and you are actively trying to identify one tumour cell out of a million this is a problem. So what they do is having identified some apparently GD2 positive cells they then use a second technique that looks for DNA aberrations inside those suspect cells to determine their true nature. The first test (anti-GD2) is highly sensitive, the second (I-FISH) is highly specific. Together they form one the most comprehensive testing techniques available anywhere.

On Thursday morning I flew out to Stuttgart to attend a neuroblastoma symposium being held in the nearby town of Tübingen. I very briefly considered not going in light of the new uncertainty over Adam's bone marrow results, but what good would that have done?

The symposium proved to be really useful and informative. Having dipped my toes in the water I don't think it will be the last such meeting I'll be attending. It was very apparent that the German doctors are very much at the forefront of trying to find new ways to cure children of this disease, particularly the significant number who relapse after initial therapy.

I returned from Germany on Sunday and was greeted by the same underwhelming welcome home that I usually receive from my kids. Far to busy doing something else - I think they noticed I had been gone for three days.

On Monday afternoon I received an email from Greifswald telling me that the second line testing in Vienna had failed to find any DNA aberrations in the GD2 positive cells from the bone marrow sample, and therefore it was concluded to be clear. Which my brain knew all along was the most likely outcome, but which my heart was mighty relieved to be told was the now definitely the case.

So now we just have to get the repeat MRI done; I am hoping this week rather than the 29th. I don't much care that there might not have been enough time for it to resolve itself if the underlying cause is some non-malignant infection. The only thing that matters is that it hasn't grown any bigger. If it's no longer visible that will be a bonus. If it has grown bigger we will need to take some further action without delay. If it's the same size, fine. We'll re-scan again in another four weeks. And we'll keep on scanning until either it does get bigger or it goes away of its own accord.

Adam has started to go back to school this week, following half-term. For the past couple of days he's been coming home after lunch, but some of his friends have been telling him they want him to stay for the whole day. We'll see how the rest of this week pans out. His teacher has mixed all the tables up and he's no longer sitting with any of his friends, so it will be interesting to see how he copes. He needs to get some routine, some stability, some discipline, some normality. That's what my head is telling me. My heart, meanwhile, is still stuck on the previous page dealing with the MRI issue. It's telling me that until that's resolved we should be very careful about getting too far ahead of ourselves ...