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.