Monday, 28 November 2011

Hat-trick ...

I decided I would go for the hat-trick, so here I am again. Three posts in as many days ... maybe I'm still feeling guilty for my prolonged absence. No, actually you right, that's got nothing to do with it. I'm stuck in a darkened hotel room in Antwerp, bored as can be whilst Adam catches up on his beauty sleep. Today we have driven over 500 miles across Germany, through Holland and into Belgium. Tomorrow we will complete the journey back to England for the fourth time.

There is, however, a genuine purpose to my post. It occurred to me I have not mentioned anything about Adam's official MRI report, nor about his bone marrow results.

The MRI I discussed with Prof. Lode on Thursday when we took Adam in for his IL-2, and ultrasound. The report states no evidence of soft-tissue disease, confirmed absence of left adrenal gland (removed during tumour surgery), and extensive abnormalities in the thoracic and lumbar spine, and pelvis, indicative of bone necrosis or metastases.

In a nutshell it doesn't tell us anything we don't already know. The abnormalities are consistent with the MIBG scan. They could be neuroblastoma, or matured cells, or necrosis (damaged bone tissue) from resolved disease, or even caused by the vast amount of highly toxic treatment Adam has undergone. In Prof. Lode's words "we see this result all the time." The most important point to take out of it is no soft-tissue disease. The rest we simply don't know.

The bone marrow results bugged me all weekend; basically because I hadn't got them. Dr Lange told me to remind him to call Cologne on Thursday when I was at the hospital, so he could find out the results to give to me on Friday. Remind him I did, and I assume he called. The problem was Dr Lange was in day care on Friday, and not on the ward. In my haste to be in and out of the hospital quickly I completely forgot that I needed to ask about Adam's results.

Which brings us to today, and the not particularly ideal scenario of having to ask for said results, and then drive home with them hanging over us if they contained bad news. Dr Lange is on vacation this week, so I knew I couldn't ask him; instead I asked the junior doctor who happened to be on the station when I walked in. After much searching and rifling through papers in various files, she eventually found a fax from Cologne. Suspicious crest of cells found in bone marrow ... No GD2 positive cells.

"No GD2 cells, so that's good", she said "But it also says they found a crest of cells, and that can be indicative of tumours."

It's okay, I was wearing my logical thinking cap, so I actually wasn't panicked by this statement. Firstly, I was talking to a junior doctor, who by her own admission couldn't really tell me what it meant. Secondly, Adam's last bone marrow tests at the Royal Marsden had shown 1% of abnormal cells by immunohistochemistry. At the time that finding had bothered me greatly and it had taken considerable, and repeated explanations, from Prof. Pearson to reassure me this was not Neuroblastoma and Adam's bond marrow was in fact clear. I figured the results from Cologne could just be the same finding of unknown abnormal cells. The one thing it definitely meant was we weren't leaving for home until I had spoken to Prof. Lode about it.

I suppose I was fortunate Prof Lode happened to be around, he's obviously very busy and not always at the hospital. I tracked him down, well actually I stalked him for a while, and asked him what the results meant. As far as he was concerned the results of the bone marrow were clear, there were no GD2 positive cells. As for the abnormal cells, we simply don't know.

You are by this point hopefully detecting a theme?

Nothing where Adam is concerned is ever straightforward or clear-cut.

I also learnt something interesting that I had not been previously aware of (it's good to talk you know). I appear to have been wrong in my assertion that the testing done at Cologne was cutting-edge. I now believe it's similar to the additional tests done at the Marsden, which themselves are more comprehensive than the techniques commonly employed elsewhere.

It transpires that samples of Adam's bone marrow were also sent to Vienna, where they were put through an advanced, and highly-sensitive, diagnostic technique for detecting neuroblastoma. The method automatically performs both immunohistochemistry to detect GD2 positive cells, and molecular cytogenetics to analyse cells for DNA abnormalities and mutations. Although he was unable to find the paperwork, Prof. Lode assured me he had seen Adam's report from Vienna, and it was clear. He had signed it off himself that morning. In so far as they only extract bone marrow from two sites in the hips, it is always possible to get a false negative result. But if a sample of bone marrow has neuroblastoma cells in it, the testing in Vienna will almost certainly find them.

I concluded by asking Prof. Lode whether we should always expect Adam's bone marrow results to throw up these suspicious, unknown cells. He nodded in the affirmative, "I think probably yes."

And on that note we left to come home ...

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