We saw Isita’s consultant Giuseppe on Thursday morning. He told us that the bone marrow aspirate and trephines had come back completely clear and gave us more details about the MIBG radioactive dye test. There is no metastatic disease (as we already knew) and the primary tumour showed reduced ‘avidity’ from the previous test early this year i.e. it took up less dye. The MRI and CT scans show it is also smaller. It now measures 2×2.8x4cm, which is a bit less than before immunotherapy. Two years ago, its maximum diameter was 17cm. So it is smaller and deader but not yet totally dead.

Now the surgeon has to look at all the results and decide whether the remaining lump is resectable – whether it can be cut out and what the risks are. Operating on a neuroblastoma is different from any other sort of tumour, because it is not a cancer of a particular organ. You can’t just take out a section of whatever it is the cancer of and the cancer with it. Instead it is in the abdomen bumping up against, and stuck to or around various organs and blood vessels. It has to be cut or even scraped out, piece by piece.

So if she agrees, the surgeon will operate, perhaps in early October. If she says it’s too risky we may go straight to radiotherapy, which has to happen anyway. It is not something that can be second guessed, so we just have to wait and see.

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