What with Isita getting pneumonia on the hottest day of the year so far and spending the first half of last week at St Mary’s Paddington, and then once she was out taking her and Jamie to Legoland on the weekend, I haven’t had much time to write about NICE’s decision not to fund immunotherapy for high-risk neuroblastoma. This does not affect Isita as she had already started, but it does affect all the children who need the drug but who haven’t started yet. I don’t know how many there are but by the law of averages there must already be about 40 in this country diagnosed since last summer, the approximate cut-off date. It is tragic that they might not get access to this vital treatment.

NICE issued the result of its appraisal of dinutuximab beta on 4 May. A lot of the people who are now more affected by this than we are have protested. Solving Kids’ Cancer – which supports families of children with neuroblastoma – has issued a statement with some other charities. Channel 4 News’ Victoria Macdonald has conducted an extremely moving interview with one family involved.

NICE said that the “plausible estimate” of the cost of the treatment (£62,300-£79,900 per Quality-adjusted life year –QALY – gained) was “much higher than what NICE normally considers a cost-effective use of NHS resources.”  QALYs are the currency of NICE evaluations. Basically, for dinutuximab there isn’t enough evidence of long-term benefit, as the cost is divided by too few years. NICE want to see ten years of benefit.

One of the reasons that this cannot be demonstrated is that the drug is too new. NICE has recognised this – partly – and said that “given the promising clinical benefit shown by dinutuximab beta so far in the trial data and the potential for longer-term data within two to three years… a period of time in the Cancer Drugs Fund (CDF) would be the best opportunity for data collection to address the clinical uncertainties.”

So hooray? Not necessarily. CDF funding would allow doctors to make individual funding requests on a patient-by-patient basis and the NHS would pay so the drug could be trialled over a longer period. But unfortunately, NICE goes on to add that the drug is too expensive even for this.

It has therefore invited the company to make a proposal. In other words, to drop it price. It has come down to a plain haggle. The discussion is no longer about medicine; it is all about money. Can EUSA Pharma, the manufacturer of dinutuximab trim its margins enough to squeeze into NICE’s model? Can NICE be persuaded to widen its criteria so that a hundred or so children don’t fall into a dreadful gap just because they are being treated here in the UK and not in France, Germany, Norway or Spain? The final decision will be issued on 12 June. Let’s not abandon these young lives.

For the past two days, Isita has been at St Mary’s Paddington. We had to go in early on bank holiday Monday as she had a raging temperature. To start with we thought it might be heatstroke, as she had been having the time of her life on Sunday paddling her feet in the swimming pool at her cousins’ house in Surrey. This afternoon they told us that they had identified a chest infection. It may not sound like good news, but it is. Now they can target the antibiotics, and if they work well, there is a good chance she will come home tomorrow.

This was, perhaps, the likely consequence of a fabulous few days of fun and activity, play dates and running about in the garden just like old times. It is easy to forget that Isita is still quite weak and when she is worn out her defences are down. Having said that, we have had the best fortnight since this saga started – happy home life has once again become the norm rather than the exception. The best barometer of our family well-being is how happy Jamie has been the past while. As much as they bicker, they miss each other terribly during the hospital periods.

Isita has the gift of happiness. Even in the hospital she is very happy. In the cooler evenings we have been taking her down the canal to Little Venice, so she hasn’t entirely missed out on the ‘Indian Spring’ or whatever we must call this unlikely heatwave. We haven’t told her that she has a lung infection as she is terrified of the prospect as it takes her back to the infection that landed her up on a ventilator in intensive care last autumn – one of the more petrifying episodes for us too. It is impossible to look at her now and think back to that nadir.

As well as the fact that her hair is now much longer – it is very fine and sticks up in sweet little tufts – Isita no longer has a nose tube. This is big news which I forgot to write about when she had the gastrojejunostomy operation just over a week ago. We had grown used to the ‘NJ’ and anyway she had the enviable ability to look good with a bit of plastic coming out of her nostril. But without it, you can’t tell that there has been anything wrong with her at all. Not until she lifts up her dress and shows you her new ‘peg’ as we call the tube which goes directly into her tummy and also the top bit of her small intestine.

Having the peg put in is a recognition that we are going to be feeding Isita through a tube for a long time yet, but also a confirmation that the feeding is working. If it was a dead loss they wouldn’t have done it. For the first few days Isita was terrified of it. The more you think about it, the odder it is. But, in fact, it is much more comfortable, and we are already seeing the benefits. Without the feeling of the line going down the back of her throat she is swallowing more and even swallowing some food. This is a great small step. It is about a year ago that she went ‘nil by mouth’. Now she puts a lot of food in her mouth but spits most of it out. The more she swallows the closer we are to getting her properly well again.