Isita will start immunotherapy this morning. We came back to GOSH last night. She hasn’t got a cold any more and the doctor who examined her on admission said the results of the blood tests they took on Friday were fine. The pain team came in early this morning and fixed her up to a pain pump. Right now it is only running on fluids but they will give her a bolus of morphine as soon as the immunotherapy starts. We can’t help being a little nervous about the start of such important treatment and, of course, about the likelihood that it will cause Isita pain.

Our three weeks at home have been amazing, despite a build up of nervous tension about the treatment. Marta and I are paradoxically relieved that they are over. We need to move on, not least because in a fortnight we’ll be back home again for another three weeks, and as this treatment goes on the more time Isita will spend at home and the easier it will be.

Marta is very tired and I think the weight of expectation about the immunotherapy is part of that. I have had a lot of work and have tried to use it as a distraction or escape from worry. Jamie too has been a bundle of nervous energy, thrilled to have Isita back at home, at times incredibly tender and very, very sad to see her go back to hospital but also jealous, territorial and sometimes just as rough and rebellious as any seven-year old boy can be. I think he can hardly know or recognise what is going on inside his own head or his heart or gut these days. He is being pulled in so many different directions. And Isita herself is demanding, still used to being to total centre of attention not just of her parents but of a whole world of doctors and nurses  who only come into her life to focus on her. We are trying gently to bring her back into a more normal world.

Isita’s sixth birthday on Friday was sweet but very low key. We were only ever going to invite a tiny number of her friends, as she had to stay infection-free as much as possible in advance of this first session, but most of them had colds. So it was just Emily and that was perfect. Isita made her cake with Marta and then she and I iced and decorated it. She even ate a decent amount of it and is very proud of the fact that she was “absolutely fine”. In fact, I don’t think she was sick all week.

Later in the day she had a massive tantrum which Emily graciously ignored, even when Isita furiously stomped upstairs. We saw the results when we took the children upstairs to bed. It looked as if a bomb had gone off in her room. The truth is it doesn’t take much to make her room look like a bombsite. She has way, way, way too much stuff – the combined results of so many people’s generosity. There just isn’t place to put it and we are going to have to give a lot away. For the things that we cannot keep, we will find good homes back here at the hospital, in the outpatients departments, or wherever else they are needed.

We are looking forwards to being able to switch from receiving to giving mode. We have so many dear friends who are doing so much like the redoubtable Cristina, who is supporting GOSH, and who gave her most recent running medal to Isita. Marta and I continue to be astounded by this generosity. Isita’s godfather Rupert came on Sunday with Sara, their daughters Amelia (who has given up sugar for February and so far raised £2000 for GOSH) and Kitty, and their son, my godson Archie – a true soulmate and partner in crime for Jamie. He brought with him an envelope gathered from lots of friends intended to support our intended family trip to Eurodisney as it is absurdly expensive and once we are there we shouldn’t hold back. He said there is a card coming identifying who you are. Thank you all. We are extraordinarily touched and grateful. We are also doing very well. The most important thing now is to support the hospital and the neuroblastoma charity Solving Kids Cancer.

Yes. Isita has been sent home for another week. The doctors want her to be in perfect shape before we start the antibodies. Right now she still has a cough and cold, her haemoglobin is a bit low, and one of her liver function markers is a bit high maybe as a result of the cis-retinoic acid pills.

Although we are keen to get going with this treatment, any time at home is brilliant. And as the doctors pointed out, it means Isita will be at home on her birthday this Friday rather than in hospital, and probably in pain. We can’t have a big party though, we have to keep her infection free.

Isita’s fortnight at home ended in a bit of a scramble to get back to GOSH before the evening handover. Jamie’s half term has also ended, but he has an earache so he’ll be going to the surgery rather than school this morning. So we were a rather downbeat and grumpy family crammed into an overladen car crawling into London on the M40 late on Sunday afternoon. Isita and I came straight up to Giraffe ward and Marta went home with Jamie and the remainder of the luggage – all of us utterly exhausted.

Even if it was over-ambitious, and the logistics of getting there and back with all Isita’s medical equipment were crushing, it was a thrill to be back in Shropshire after so long. If only we could have spent longer there. Isita hadn’t seen our house there since Christmas 2016, and I only made three overnight trips last year. For a little bit it felt like old times.

During the fortnight at home, Isita has definitely grown stronger and rediscovered what life outside hospital is like. But as normal existence beckons, she is beginning to realise that it should be this way. At our kitchen table warmed by the iron stove, and hungry after running about in the garden, she was desperate to eat the mussels we were having for lunch and not at all keen on the boiled carrots we offered instead. For the first time she asked “Why did this have to happen to me?”

The return of appetite and actual hunger must be a positive sign that her gut is reactivating, but we have to be careful. The other night she ate a bowl of chicken broth and some pasta and then bounced on her bed, which made her copiously sick.

Assuming it is not postponed because of the slight cough and cold she is suffering from, Isita will start immunotherapy this morning. Over the next fortnight they will slowly drip a constant infusion of artificially adapted antibodies into her blood. These have been engineered or trained to recognise and kill neuroblastoma cells, as if they were viruses. The treatment is meant to mop up any remaining ‘microscopic’ disease lurking in her system, which is the main cause of relapse.

The problem is that some regular cells in the nerve endings share the protein flag that the antibodies use to identify neuroblastoma, so they get attacked too. This hurts, and in a small number of cases, causes permanent damage. This morning the nurses have just come in to set up a morphine pump by Isita’s bed in preparation for the start of the treatment. Let’s hope it goes OK.

Last week at home was heavenly, but exhausting. This week, unexpectedly still at home, is so much better. We are all getting over a bit of a cold, but are sleeping well, and regaining energy.

We thought Isita would start immunotherapy on Monday, but this has been postponed on the grounds that the delay won’t do any harm and the extra week of home life will do a lot of good. It’s true. Home life is so good for her. She’s doing better every day, eating a little and getting stronger.

She went to school a few days at the end of last week and loved it. Now it is half term. Isita and Jamie play and bicker. Sometimes he is jealous and eager to help Marta and me with our medical responsibilities, which are strict but no longer overwhelming, but for the most part he is sweetly protective.

We have to be careful not to drop our guard, and feel very grateful for all the careful training we received at GOSH. Last week’s cold caused a moment of tension as Isita’s temperature crept up to 37.8C before dropping back. At 38C, we have to take her to St Mary’s for intravenous antibiotics, in case there’s an infection in her line. That is what our training is meant to prevent.

On Friday we are all going up to Shropshire for a couple of days, something we haven’t done together since Christmas 2016. Then on Sunday evening it is back to GOSH, and Isita starts immunotherapy on Monday.

Exactly nine months after Isita was admitted to GOSH – she arrived in an ambulance from St Mary’s Paddington as her kidneys weren’t working properly – we have finally been allowed home. She last slept in her own bed 288 nights ago.

We are here for a week and then Isita will go back to GOSH for a fortnight of immunotherapy, then three weeks back here. And so on until July, but with less and less time in hospital.

As we are due back on Elephant Ward so soon, we shouldn’t really have felt that emotional about going. But of course we did. Various nurses and other friends like Em the physiotherapist dropped in throughout the morning to say goodbye. What a job they have done to get Isita this far and to make it possible for us all to be at home. It is a huge achievement. The dark days of the autumn are far behind us.

Here at home, Isita’s bedroom is full, full, full. An army of teddies is about to burst out and march down the corridor. She has a pirate’s trove of plastic jewellery overflowing from tin caskets (plastico buenisimo!), and a Barbie closet quantity of pyjamas. She hardly wore anything else all last year. We are due a rather terrifying clear-out – mañana.

I was still in my dressing gown and pyjamas this morning when two of the lovely oncology doctors came round to Isita’s room with the wonderful news that yesterday’s MRI showed no change in the size of the tumour since it was last measured and no signs of problems anywhere else. We still have the MIBG scan on Friday, but the greater likelihood is that this will also show no change since November. Let’s hope. After our dreadful panic from last week, this is fantastic news.

Barring any other unforeseen complications, it opens the way to starting immunology very soon. We may start the preparations on Monday. As Isita’s blood and other tests are also coming back normal, apart from the tiresome return of adenovirus and sapovirus infections, we are also expecting to have Isita sleeping at home from this coming Monday. The plan is to finish our home TPN training this week. We are getting back on track.

We are continuing with the feeding programme, which is a slog. But there are signs of progress here too. Isita hasn’t been sick for several days. We are however back on the old hospital feed and a bit nervous whether she will tolerate it as well as she tolerated the Nourish feed. We are approaching this challenge on a strictly empirical basis. i.e. we make considered changes and monitor the results and if it doesn’t work we try something different.

Over the past year we have come to appreciate there is a wide difference between clinical and empirical medicine. Over the past few weeks, Marta and I have seen Isita in better shape than she has been since last June and getting better all the time. Then the various tests suggested a different story. So while her increasing good health encourages hopes and dreams of yet better times ahead, we live with the fear that some insidious problem could be sneaking back where we cannot see it – like a thief in the night.

So the detailed attentions of the clinicians, and the light they shed is greatly reassuring. Isita looks like she is getting better – and for now the tests confirm this. The MIBG on Friday is a vital milestone yet to come, but already we are happier. Thanks to everyone for your great support and prayers, especially over the past week.

Just as we were anticipating some time at home and a short breather before the next stages of treatment, two complications threaten to change the plan. The first is the unexplained appearance of imbalances in Isita’s blood. It is both too acidic and she also had too much bilirubin, i.e. jaundice, although that has come right down today. The second more disturbing complication is the possibility that one part of the primary tumour may have increased in size.

There is no connection between the two upsets. However, they noticed the possible change in the main tumour during an ultrasound checking for liver problems that could have caused the jaundice. The liver and gall bladder are fine, but incidentally the scan showed that part of the tumour may have grown. The difference is within the margin of error comparing the ultrasound and the CT image taken in November. “Apples an pears” as the senior nurse practitioner noted. We hope to get a better picture after an MRI tomorrow or the next day.

Next week they will also carry out an MIBG scan. The radioactive dye will show if the primary tumour is active. In November, there was just a small uptake indicating treated disease. Back then there were no metastases. We must hope for a similar result. Meanwhile we try to remain calm.

There is still a scenario under which we bring Isita home next Monday. Our TPN training is temporarily suspended but we can get signed off if we start again tomorrow. This will happen once the imbalances are under control. We have temporarily stopped the Nourish feed and some medications, and will only reintroduce them gradually.

What is most important is that the scans should be clear. If so, we will move ahead with the first stage of immunotherapy next week. This starts with a fortnight of retinoic acid – a supplement – before the actual therapy begins: 10 days in hospital, two weeks out, 10 in, and then three more cycles maybe as an outpatient if she can tolerate it.

If the scans show the primary tumour is active and growing, Isita will need more chemotherapy before we go on. The worst case scenario is that they find metastases. That would indicate the high dose wasn’t high enough. As our consultant Giuseppe told us this afternoon, “if this disease kills Isita, it is metastases not the primary tumour that will do it. We can deal with the primary tumour.”

So this scare over the tumour growing, even if it is justified, does not, on its own lead to the worst case. Contary to what one imagines, the primary tumour is not the engine of metastatic disease. If other lumps start growing they will come from individual cells already lodged around her body. These are best dealt with by immunotherapy, which is why this next stage is so vital.

Putting the most positive spin on a fairly grisly afternoon, what appears to have been a temporary episode of jaundice has pushed the doctors to carry out tests which would have anyway been needed very soon. If the results are good, Isita will soon be embarking on some of the most sophisticated cancer treatment there is, which we are extremely, extremely lucky to have access to. If they are not good, we have been alerted to a potential problem at an early stage.

I wish I could go to sleep and wake up next week when all this will be clear. Pray for her dear friends.

I meant to get up very early this morning to catch up on the work I haven’t been able to do while on TPN training. But I was struggling to wake up at 7 o’clock when Isita needed my help to get to the commode. I was thinking of opening my laptop to answer some emails, when she called out in shocked surprise “Daddy! I think I’m doing a real poo!” As we peered at it, I almost cried and so did she. I won’t go into details, apart from to say there is still room for improvement. Nevertheless, a huge advance; she has not produced anything you could call a turd at all since early July.

As is so often the case, the feeling of elation was short lived. Soon afterwards she was being sick and suffering from sharp stomach pains which made us think the end of her NJ tube might have once again become displaced. It hadn’t, as an x-ray showed this afternoon. More good news.

It feels like we are making great progress in all areas. Isita zooms down the corridors on her scooter rather than asking for the wheelchair. She is starting to swallow rather than spit out saliva into a bowl. She was not sick yesterday at all, nor three days ago – also a first in many, many months.

Marta and I are in no doubt that we owe these advances to the new Nourish feed we have imported from the US, on the recommendation of my friend Glada. This morning we told the hospital we were no longer going to give Isita the old Neocate feed.

This upset the dieticians. One came to explain how dreadfully risky it was, as none of our nurses or specialists have been trained in using Nourish, nor the new pump that we are bringing in. As we live in an Abbott area, It would be better to only use products supplied by that company, he said. Unfortunately, Isita does not have an Abbott tummy.

Meanwhile, the TPN training is going brilliantly. Yesterday, I changed Isita’s dressing myself. We expect to be looking after her at home by Monday 22 January Marta’s birthday. And about time too. Last night was her 250th consecutive night at GOSH. She can’t have spent more than a dozen or so nights at home since this all started.

Exactly 12 months ago today, I took Isita into the Westbourne Grove Medical Centre with pain in her back and hips. This was her fifth visit in a month and the GP referred her immediately to paediatric A&E at St Mary’s Paddington. By that afternoon I was being taken aside by a kind radiologist to be told that she most likely had a neuroblastoma and would be going to Great Ormond Street.

Those first days in hospital seem impossibly distant. It has been a horrible year, but that doesn’t mean there haven’t been good bits, especially the spirit that Isita and Jamie have demonstrated, the amazing support that all our friends and family have given us, and the care we have all received at GOSH.

We are now working on getting Isita home. Our TPN training starts on Tuesday, so she could be discharged on about 19 January unless one of the next stages of treatment intervenes. She is very excited about it.

Our attention remains focused on Isita’s gut. This evening Jamie and I went to the UPS depot in Kentish Town to pick up some special all-natural paediatric formula. It was supposed to be delivered this morning, but the driver never knocked or called and instead falsely claimed that he hadn’t been able to collect funds for customs duty. Disgraceful. Never use that crappy company if you want something important delivered…

Anyway, we are going to slowly introduce the feed in the hope that Isita’s gut will like it better. It is actual pureéd food while what we are giving her now is glucose syrup combined with pre-digested amino acids. Yum!

Apart from the small amounts of feed through her nasal tube, Isita has not eaten for more than six months. Today the doctors said she could suck lollipops – the first proper thing she has tasted in all this time. It’s almost a shame she doesn’t have much of a sweet tooth.

We are involved in a kind of race between the different elements of Isita’s treatment. If nothing else changes, on Monday 8 January, Marta and I will start training to administer the paraenteral nutrition (TPN) at home. Officially, this is a fortnight course 10am to 4pm daily. It is not hard but there is no room for error. Once we have learned, we can take Isita home and treatment continues from there.

One of the things that could change this picture is that Isita’s platelets could increase to the level that makes surgery possible. They need to be above 100. Having stuck stubbornly at just over 50 for the past while, they went up to 92 in the most recent blood test, the results of which arrived yesterday. If she is clear for surgery, we don’t think the doctors will delay.

The other thing that could change the picture is that Isita’s small intestine could start to function better. In the past few days we have roughly tripled the amount of feed she can take in a day from what was, admittedly, a low base. Yesterday she had 170ml, and only vomited once, quite early in the morning. It is impossible to guess how much feed she might be able to take 10 days from now, let alone in 24 days time when our TPN training would finish. Will it be necessary by then? The plan is , eventually, to swap the NJ tube for a ‘peg’, a tube directly into her abdomen, which will make it easier to administer the feed.

The final element of Isita’s treatment that will be affected by these various scenarios is immunotherapy. It would be better if she had surgery before rather than afterwards. But that has not been on the agenda until the recent news about the platelets. Immunotherapy and TPN training are also incompatible as Isita must be free of all IV treatments while the training goes on.

The senior oncologists want to push on as quickly as possible with whatever they can, and have been encouraging us to increase the rate of feeding in the hope of weaning Isita off TPN. The only option not on the table is radiotherapy as Isita’s gut is way too fragile to risk the collateral damage. But apart from that, we have to be ready for anything.