The Children’s Magical Taxi Tour

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.

The second clear MIBG

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.

Our move to Shepherds Bush

In two days’ time Isita finishes her differentiation therapy. This is the vitamin A supplement (originally an anti-acne treatment apparently) which somehow triggers any remaining potential cancer cells to ‘differentiate’ – in other words to develop normally rather than malignantly.  Just over one week ago, she reached the end of the immunotherapy, which we were so lucky that she could get at all.

Wonderfully, she was able to complete the final five days of the course at home. The drug was given to her through a Baxter pump, which is a plastic bottle containing a rubber balloon with the medicine in a vial inside. Marta and Jamie were in Mallorca and we had only just moved everything into the new house. So it was a precious few days for me and incredibly exciting for her. There were still mountains of boxes everywhere. Isita spent (and still spends) a lot of time observing the Ukrainian carpenters and painters, and the Polish landscape gardener who even now are finishing things off. We weighed the pump morning and evening to check it was getting lighter, the only way to be sure the medicine was going in.

As we settle into our new light and space-filled existence in Shepherds Bush, we are also moving into what we hope will be the penultimate phase of Isita’s treatment. The first thing we have to get through is a barrage of tests with all the usual tension and suspense. On Friday, she had the radioactive dye MIBG test, which involved lying still on the scanner bed for three hours. If there are any active tumours in her body, they will absorb the radioactive dye and show up as dark spots on the scan. The last time she had this test was January and then there was only limited uptake of dye from the main tumour and nothing else. We are hoping for the result to be better or at least no worse.

Then in just over a week, she will have another bone marrow aspirate and trephines. It doesn’t seem long since she had the last one, which was fine. In about two weeks, she is scheduled for an MRI and then – a few days after that – she could go in for surgery. Until she is safely through all this, there is no way that Marta and I can truly relax.

That doesn’t mean we are sitting around biting our nails. There is too much going on to dwell on the many things that could still go wrong. Jamie and Isita spend their days alternately playing and bickering. We struggle to get them to tidy their new bedrooms. The turf in the new garden is still too new for them to run about on it but they scamper down the street to play in Hammersmith Park. With some small happy improvements, this could be the way things are going to be for the next while and that would be OK.


We have made it to Shropshire. All work has been put aside. The wild meadow is swaying in the breeze. Even the break in the heatwave is welcome as the vitamin-A supplement which Isita is on means her skin is ultra-sensitive to sunburn. But it is warm enough to lie in a hammock, which is my plan for this afternoon and tomorrow afternoon and the one after, unitl next Saturday. Unlike our previous attempts to get away, which have been fairly stressful because of the complexities of looking after Isita, this break feels like it is going to be properly relaxing. Not having anything on the agenda for the next six days except for some gardening, and reading books in my new hammock – a birthday present from my twin – definitely helps. The last time we had a break similar to this was over Christmas 2016 just before Isita was diagnosed.

While we are relaxing here, my niece Cecily her sisters, parents and my mother are in the final stages of a magnificent challenge. They are collectively swimming the equivalent of the length of the River Mole in their swimming pool. You wouldn’t want to swim the actual river which is pretty murky – although according to an Environment Agency report I saw a few years ago it has the greatest diversity of fish of any river in southern England. They are doing this to raise money for neuroblastoma research at GOSH. Swim on!

Mood swings

The side-effects of Isita’s current therapy are partly psychological. The drugs induce massive mood swings. She has sudden bursts of total fury which subside as quickly as they flare up. Although we know why this is happening, we still have to tell her that it is not right, not least because she can be quite scary. She had a fit with Jamie the other day for some quite trivial reason which wasn’t his fault anyway. He fled almost in tears and I had to reprimand her. She stormed into her room and slammed the door. A little while later, she came out and wordlessly thrust a piece of paper into my hand, like the haughty heroine of a Victorian melodrama.

She has only just learned to write – probably a little behind the rest of her classmates, but she loves it and puts down whatever is in her mind. Her letter – with the words all run together and spelt however she pleases  – read: “I am sorry that I shouted at you. Please make it up to you. When I shout at you I feel pain and regret.” More recently, we have been getting emojis.

It is a tough call being given medicine which makes your head go all over the place, and then to have to spend so much time cooped up in hospital. Currently she is sleeping at St Mary’s Paddington and spending her days here at home, which is a big improvement on the previous three weeks. She was supposed to come home after successfully finishing the fourth cycle of immunotherapy ten days ago.

Unfortunately, during the last 24 hours of the treatment she developed a high temperature. At first, they thought it might be a delayed reaction to the antibodies, but it turned out to be a bacterial infection. For two days she was very feverish and down at heart, as she had been looking forwards so much to going home, seeing Jamie and even spending a weekend down in Surrey. The doctors prescribed some powerful IV antibiotics so by Saturday evening she was much better. On Sunday I took her out for spaghetti al cartoccio at Ciao Bella on Lamb’s Conduit Street (pasta and seafood cooked in a greaseproof paper bag – heaven!), a funfair on Coram’s Fields and a strawberry sorbet which made things much more cheerful.

Normally, once you have gone 48 hours without a fever you can go home or get out of isolation. However, the blood cultures from her central line continued to test positive for the infection, meaning it was in her central line. This is the most dangerous thing of all as the line is placed directly into her aorta so any infection goes straight into the heart and the bloodstream. You definitely do not want to let it get that far.  For a while we thought they might have to take the line out and start again. But instead she has been having IV antibiotics three times a day, and for a while they stopped her going outside.

She is far too well to be in hospital and luckily everyone we deal with recognises this. So now the regime has been adapted. The West London community nurses come home once a day to give her one of the doses and then she has the other two at St Mary’s overnight. It was one of the community nurses who noticed that there had been a communication mix-up between GOSH and St Mary’s and that we have been overdosing Isita on the antibiotics for the past few days – not good for the kidneys. Normally that sort of news about one of your children would send you up the wall – and rightly so. But we are so inured to the perils and troubles of this treatment that we just thank God that they spotted the problem and rely on the doctors to fix it. I don’t think we have the energy even to be angry. Maybe we ought to get Isita to write them a letter.

Great news from Nice

Isita finishes her fourth cycle of immunotherapy late this evening (Friday) and all being well, will have concluded the entire course by mid-August. Our joy at her improving condition and the hope that we have from the potential benefit she will get from the Dinutuximab Beta treatment has always been tempered by the possibility that other children at earlier stages of treatment than her might not get access to it. This is no longer a concern.

Yesterday, the National Institute for Health and Care Excellence (Nice) unexpectedly recommended that the drug be provided on the NHS. It has worked out a mutually acceptable price with EUSA Pharma, the company that makes it. From a very difficult moment earlier this year when we feared that the drug might be suddenly withdrawn from everyone including Isita, via an interim stage when her treatment and that of a few other children was guaranteed, now all children who need it will get it – a result that was universally desired but far from guaranteed.

The company and the people at NICE have worked hard on this, and the doctors here at GOSH and at Southampton have also been strongly but calmly insistent. The publicity from Channel 4’s wonderful Victoria Macdonald has also helped. She committed to the story right at the beginning and made it an issue that couldn’t be ignored. High-risk neuroblastoma is a hell of a disease. It is really encouraging to feel this communal determination to treat the children who suffer from it, and to see that determination translated into action.

Green shoots

Outside our front door we have two Seville orange trees which were grown from pips gathered from trees in the garden of Marta’s father’s house in Heliopolis by her friend Eliza and given to us soon after we were married. About two years ago they stopped growing. They didn’t die but there was no new growth. I never worked out why. Last summer I repotted them with fresh compost and watched anxiously over the autumn and winter. This spring I fed and watered them dutifully. About two months ago, one of them sprang back to life and is now flourishing with thick dark healthy leaves, but the other remained skeletal until this brilliant period of summer heat. In the past week, the tiny green buds that looked as ready to shrivel as to grow have suddenly burst into strong shoots.Irrational as it may be, I can’t help associating the rebirth of our orange trees with the growing hope we have as a family. Yesterday (Thursday), a doctor came to Isita’s room to tell us that both the bone marrow aspirate and the trephines from Tuesday a week ago were clear. We knew the BMA result earlier in the week, but the trephines (bone samples) are the more definitive result. This is because the dratted cancer cells are sticky so tend to adhere to the inner wall of the bone and might be there even if they are not found in the marrow itself.

The other huge advance in Isita’s treatment is that the gastro consultant decided on Wednesday to reduce her para-enteral nutrition (the intravenous fluids that we feed her with) by another step. She is now getting one litre a night. We started on 1.3 litres. Reducing the fluids should make her more hungry and thirsty. So with any luck she’ll eat more. If she eats more they can wean more. And so on. As I have mentioned before, there is now daily evidence that her digestive system is working.

It was mid-June 2017 when Isita went nil-by-mouth and exactly one year ago, on 6 July when we got the test results showing that the induction chemotherapy had put the cancer into remission. One week later, she started high dose chemotherapy – the thing which destroyed her guts and nearly killed her, and hopefully the cancer too. Now we can finally look forwards to a day when she will have recovered from this ordeal, providing of course that there is no relapse.By mid-August, we think Isita will have finished immunotherapy. She’ll then have a barrage of further tests and then surgery. This means radiotherapy could take place in October. Under this schedule she would finish treatment in early November. She might even be eating normally by then. It is amazing even to be able to speculate about this.These happy tidings coincide with the news that in his final year at Wetherby Pre-prep, Jamie won the Strength and Determination prize. No father would ever say his son did not deserve such a prize, but it is impossible to state how much I feel that he really has. I haven’t mentioned him enough in this blog. Over the past 18 months, he has struggled with violent emotions: fear, anger, jealousy, shame, loneliness, and sadness. He has worked out how to deal with them, to overcome them, and to be the most amazing protective, generous brother to Isita. He has grown. He is flourishing. Thank God now they both are.

The best three weeks yet

Forgive me, friends, for not telling you what has been happening with Isita and with us for several weeks. Since she got out of hospital in early June after the third cycle of antibodies, we have had the best three weeks since she first got sick, although not without the odd hiccup.

A week ago, Jamie fractured and badly cut the top of the middle finger of his left hand in a freak bowling accident, so on Tuesday we were anticipating having both children simultaneously under general anaesthetic in different hospitals. In the end the plastic surgeon at Chelsea and Westminster wisely added up the pros and cons, decided the tendons were undamaged and settled for a protective splint and a course of antibiotics, with frequent check-ups.

Isita did have her GA for the mid-treatment bone marrow aspirate and trephines. This is when they take samples of marrow and bone to test for the presence of cancer cells. We learn the result tomorrow (Monday) when she goes back in to start the fourth cycle of antibodies. We feel that Isita has never been better since all this started, but every test has the potential to provide an unwanted result, and so we hope for the best.

We are very pleased to be taking Isita back to GOSH on time and in great shape. It is one of our mini-ambitions to get her through the last part of immunotherapy with no more upsets or delays. Of course, we’ll roll with any changes to the schedule but it will make managing a manic summer much easier if we achieve this.

Isita will spend her last couple of hours at school tomorrow morning. She has gone in quite a lot over the past three weeks and loved it. The other amazing progress is that she is actually eating a bit of food and not spitting it out. Her favourites are potato salad with red onion, spicy doritos and hot salsa, and chicken soup. But she has also enjoyed venison and partridge – maybe because of their stronger taste. Over the past couple of days we have witnessed an important change in what comes out the other end – frequently number four on the Bristol Scale. Everything is so much easier when you don’t have to worry so much about accidents. Yesterday, we had a picnic under some oak trees in that wonderful wild corner of Hyde Park near Lancaster Gate where no one ever goes. It was like being in the countryside less than 100m from the Bayswater Road.

All being well, we’ll manage a week in the genuine Shropshire countryside in late July with a total electronic device black-out before Isita has to come back for her fifth and final antibodies.

A lot has to go right to make that possible. Both Marta and I are trying to work full-time and mostly succeeding. I have a lot to finish before I can go away. Then in early August, with Isita back in hospital (we hope) we are going to move house.

Mad? Possibly. I have to confess that nine months into our Shepherds Bush renovation project it is beginning to take up quite a lot of Marta’s spare time and energy – but honestly not yet mine. We have got this far without it taking up headspace – for instance I haven’t even mentioned in this blog – by simply outsourcing the management to our excellent architect/project managers and friends Michael and Sylvia, both from Sevilla but here in London and totally on our wavelength. The Ukrainian builder is pretty good too. They have just got on with it. Moving will be a different story, But Marta’s whole family are coming over from Sevilla and Cordoba in early August – not to move boxes – but to look after Jamie and Isita and to enjoy some cool damp weather. We are lucky to have them.

Three down, two to go

Isita is now back at home after what has felt like a marathon third cycle of immunotherapy. Compared to what she (and we) went through last year it was a walk in the park. But we have still spent the majority of the past month in hospital as the pneumonia that she contracted on that lovely hot bank holiday at the beginning of May lasted all the way through to the end including a week of intravenous antibiotics in hospital. It then took a good fortnight to get through the actual treatment.

We started slowly because the antibodies caused fluid to leak into her lungs and this provoked a persistent cough, made worse by the aftermath of the pneumonia. They had to stop and start again and we lost a few days. However, it could have been worse.

It is amazing how cheerful and good humoured Isita is despite being attached to a syringe pump and not allowed out of her room or even far from her bed for a solid fortnight without a break. When they finally disconnected her on Monday evening she begged to be taken outside with her scooter before we got in a taxi and went home.  The hospital pharmacy hadn’t sent up the take-home medications yet (they take ages) so she whizzed down to the playground at Coram Fields and went on the swings and the zip wire. It was suddenly obvious how much she was yearning to get outside.

I sympathise. I want to spend every minute out of doors at this time of year, and so does Jamie. At the beginning of June I took him fishing with his Godfather Charlie and friends on the Itchen and he caught a huge trout. He also went swimming in the river.  The other thing which makes him extremely happy is having everyone back at home. It is very sweet to see how delighted he is to have his sister around once more.

Although the antibody treatment isn’t painful for Isita, there is no question that it is tiring. Now that she is free, she doesn’t have to run around much before she runs out of juice. We are terrified that she will overdo it and expose herself to another infection. To prevent this, there will no doubt be quite a lot of lying around on the sofa watching Horrible Histories and My Little Pony movies over the next couple of weeks.

To be honest, while we could all do with being out of doors in the sun (or in Isita’s case under her UV protective umbrella as the treatment means she can get sunburnt on a cloudy day), we could all do with a bit of lying on the sofa watching TV too. The amount of medicine we have to give Isita at home means that although it is wonderful to be here together, it is also exhausting. By the time her next cycle comes round we will almost be relieved to be heading back to GOSH and the wonderful nurses of Elephant Ward so we don’t have to worry so much about what she is having and when.

We will also be very relieved when Isita finally has the mid-treatment bone marrow aspirate test. They were supposed to do this before starting the third cycle of antibodies but three times the anaesthetists said it was better to postpone it because fluid in the lungs made it too risky. Eventually, the consultants postponed all the way to the end of June.  As it was inhaling phlegm or vomit on waking from the BMA which sent Isita down to intensive care on a breathing machine for a week last October, we were more than happy not to take the risk. Even so, the wait is nerve-racking as we can’t take anything for granted. The best thing is not to think about it, and to take each day as it comes.