Inevitably Isita is back in hospital. Marta brought her in after lunch on Sunday. She started getting warm the night before, but did not reach the trigger temperature of 38.5 celcius which requires an immediate trip to St Mary’s. We gave her calpol and hoped without expectation that it would go away. Poor thing, her resistance is so low after the chemotherapy, one might as well try to hold back the tide with a mop. The lovely community nurse came,  wormed the story out of us, and apologetically sent us in.

The good news is that Isita has remained bright and cheerful, she hasn’t lost much weight thanks to the feeds through her nasal-gastric tube, which are going very well after the dreadful struggle to get them started, and we have a room with a view over Paddington Basin.

However, her temperature is now spiking above 39 degrees every six hours as the calpol wears off. The nights on Grand Union ward are tiring, not only because of the frequent bleeping of the pumps, but also because we hear everything in the corridor; the alarm that repeats every time someone calls a nurse, and last night the furious shrieking of another wretched child that went on and on. Isita yells when she has injections, but not like that, thank God.

Our little break at home was blissful. We went to the park, had lunch all together round the kitchen table, played games. I hope we’ll get Isita back to that very soon. She needs to start getting better today or tomorrow if we are to be out for Easter.

Home! Home, home, home, home, home, home, home,  home. Hooray!

Non-stop chat. It’s hard to get a word in when she’s in full flow.

The GOSH team have set up a complex combination of chemo, fluids, nutrition and anti-sickness drugs. Even we, who are used to it, are quite impressed.

We’re getting there. We are getting there. Today Isita starts her fourth cycle of chemotherapy, the fourth out of five. The consultants only decided yesterday to go ahead. They have been weighing up her ability to endure the treatment against the need to maintain its intensity. Two days ago, the preferred option was to spend a couple more days boosting her white blood cell levels and then only begin when they had been stable for a further 72 hours. That would have meant starting on Monday or Tuesday at the earliest. One of the reasons why they are more confident about going ahead now is that Isita has been piling on weight as she recovers from the adenovirus which laid her low for most of March. 

We have been writing up her progress on a whiteboard next to her bed. As I look across now, I can see that the low point was exactly one week ago. On Saturday 25 March Isita weighed just 14.25kg. Today she weighs 15.7kg. So, she has put on 1.5kg in a week. The challenge of getting her back to 17kg, which is what she weighed when she was first admitted to hospital in early January, feels within our grasp.

Isita is not only heavier and stronger. She is also back to her old bright, bossy, cheeky self, wrapping the nurses and her parents around her little finger. It is when she is like this that we have the greatest faith that she will get through this entire ordeal and come out happy and healthy on the other side. As we prepare to start this cycle of chemo, it certainly feels that she has fought and won an important battle. There will be other low points before we are done, and Isita has shown she’s got what it takes. One of the oddities of this treatment is that in recent weeks we have been much more intimidated about the threat from some hidden bug, or bacteria or virus than by the tumour itself, which is almost possible to forget about since it doesn’t hurt her any more. But ultimately, it all comes down to keeping Isita fit enough to continue with the protocol, and it seems like we may have just managed to do that.

We don’t yet have any definitive news about how effective the chemo has been so far. It looks like the neuroblastoma has been checked. An ultra-sound they did a week ago showed that it hadn’t grown in size, but ultra-sounds are not a very good way of picturing this type of tumour. They will do an MRI in mid-May to get the exact picture. We haven’t yet got the results from the bone marrow aspirate they did on Wednesday. The surgeons took blood samples from the bone marrow in the back, during a short operation under general anaesthetic. These will show how well the chemo has removed the metastases from around the body. As was explained to us at the beginning, it doesn’t make sense to move on to surgery unless this has completely worked. There is a plan B involving more chemo if necessary.

Isita is now entering her fifth week in hospital. Let’s hope the side-effects to the coming cycle are not too severe, and we may finally get home sometime next week. In the meantime, to stave off the drudgery of hospital life, I am going to nip out and buy a can opener and perhaps a small bottle of sauterne so we can tuck into Charles and Virginia’s paté de foie gras.

We are out getting fajitas – Isita’s special request.

Over the past three months (nearly) so many people have been sending wonderful messages of love and support, both in response to this blog and also out of the blue. One of the people whose words are always full of compassion, and the understanding born of experience, is Ann, Isita’s great aunt, who – it is no exaggeration  – saved great uncle Piers’ life when she married him nearly three decades ago, and who has cared for him exactly as the marriage vows forsee and command ever since. She knows everything there is to know about hospitals, community nurses, and day-by-day, minute-by-minute care. Sad to relate, Piers died yesterday. At this moment all we want is to return to Ann the love that she has given us over all this time.

Isita came out to Coram Fields and Brunswick Square yesterday – her first proper time outside in three weeks. The hospital has lent us a little wheelchair to get there. The fever has pretty well gone. I don’t think it has spiked in the past 24 hours. She is nibbling on bits of food, for instance purple monster munch crisps – the pickled onion flavour. But her stomach is still upset. Once we’ve fixed that we are away.

Marta managed to sleep until 9 o’clock this morning in hospital, and Isita woke up feeling more cheerful than she has for days, asking for coconut yoghurts and dairy free chocolate ice cream. My mother also found her much more sparky during the first part of the day, although In the end she didn’t eat much.

We have been waiting for that morning when Isita awakes refreshed and free of fever, with appetite and a smile, as we have all done after a few rotten days in bed when we realise we are well again. This was not quite it. She is still running a near constant fever. 

The doctors have prescribed a bewildering array of drugs and treatments over the past fortnight. The gantry by her bed has been festooned with bags of blood and fluids, and syringes of antibiotics. But despite this barrage of 21st century medical technology, we are fighting her temperature with wet cloths on the forehead. The simple tender ministrations of Florence Nightingale are as important as the medicines, especially when there is no diagnosis and no progress.

This evening we turned a corner. There is now a diagnosis, so progress is now possible. The microbiologists have identified an adenovirus in her blood. They are stopping most of the antibiotics (which in itself should settle her stomach), as after all this time it cannot be a bacterial infection. Those medical artists who interpret the CT scans, heart echoes and ultrasound have searched throughout her body and found nothing. 

Instead they are starting an anti-viral treatment. This is complicated and has its own side-effects, but it raises the prospect that Isita will start to feel better any day now. Our next cycle of chemo may be delayed until early next week. There is no chance that she will go home before it starts, but we hardly care about that. We have a plan and we know what to do.