I am in London taxi with Jamie and Isita leaving the Docklands towards the Blackwall tunnel and a French Gendarmerie motorcycle officer is holding up the traffic for us. No, wait. We’re cruising down a French autoroute towards Paris and a British police motorcyclist roars past blue lights flashing – and we’re still in that black cab driven by a bloke from Elephant and Castle called Bill.
Are we dreaming? Look out the window. There is a line of cabs as far as I can see in front of and behind us. We are on the Children’s Magical Taxi Tour from London to Eurodisney, now in its 25th year. Our convoy of about 100 cabs was seen off from Canary Wharf by the Lord Mayor of London and a brass band. The children were showered with presents.
Bill and the other cabbies, organised by the Worshipful Company of Hackney Carriage Drivers, have given their time and vehicles, as have a fleet of ambulances, a team of medics (including Giuseppe and Aylish from GOSH who are the consultant and lead nurse directing her treatment). We were greeted by the entire staff of a French service station who laid on a party to break the journey.
We arrived at our Wild West-themed hotel in time for dinner. Up early the next day, I rushed Isita through her morning meds and TPN disconnection and we got into the park an hour before official opening. With the aid of a special disabled persons family queue-jumping pass, and the help of Bill, our indefatigable and patient guide and support, we got through an incredible number of rides.
Jamie got to experience 360 degree inversions on Hyperspace Mountain and decided he likes adrenaline. Isita had a chat with Cinderella. We all went on a runaway train.
By late afternoon we had a front row view of the parade. Isita went crazy as she called out to her favourite princesses as they danced by, and it seemed they were blowing kisses and waving right back at her. You have to admire Disney; the quality and attention to detail really does amount to a kind of magic. Isita believes, and even Jamie (now wised up about Father Christmas and the Tooth Fairy) was quite impressed. Isita dressed up as Merida from Brave for the dinner and conked out after meeting Daisy Duck. What an experience!
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.
A few days ago, Isita’s consultant rang Marta to say that the MIBG radioactive dye test which Isita took several weeks ago had come back clear. We don’t have any more details than that but it is extremely good news. Since they did that test they have also carried out a further bone marrow aspirate and trephines test (a biopsy of marrow and bone from the back to test for cancer cells – no results yet), an MRI and a CT scan (also no results).
For the MIBG they injected a radioactive dye that is absorbed by tumours and so would show up on the full body scan which they carried out the day after. This is a big scan and takes several hours. Isita manages to lie very still – the same for the MRI.
The last time she did this test was at the beginning of the year and only the main tumour had taken up a small amount of dye consistent with treated disease. The most important thing now, as then, is that there has been no return of metastatic disease i.e. new tumours in other parts of her body.
What we were told many months ago is that any new tumours will not be generated by the main tumour – which we hope is dying or dead – but would grow from individual neuroblastoma cells present since before treatment started and so by definition resistant to the most powerful chemotherapy which it is possible to administer against them. The ultimate success of Isita’s treatment is dependent on preventing the return of the disease in this way. The immunotherapy and differentiation therapy treatments that we finished a couple of weeks ago are the best ways of ensuring this, as they destroy the neuroblastoma cells or trigger them to develop normally.
As for the main tumour, we don’t know anything more about it but now that the doctors have completed all the available treatments against possible metastatic disease they are coming back to focus on it. This coming Thursday we are expecting to sit down with the consultant to discuss the results so far and to talk about surgery which could take place in early October, to be followed by radiotherapy. Isita doesn’t yet know about the surgery although she may have some unconscious awareness that something of the sort is coming. She had a strange dream last week – a nightmare which resolved itself – when her body opened and she had to close it up again.
Of course, Marta and I are tense – a little less so since we got the MIBG result – and this won’t go away until we are safely on the other side of the op. Still, aside from suffering a bit of a cold, Isita is in a goldilocks period right now. She is on almost no medication, full of energy, going to school, enjoying the new house in Shepherds Bush, getting on well with her brother (and vice versa), and now out of hospital for the longest continuous period since she was first diagnosed. She is once again more used to being here than there. Long may it continue.