Marta called home this morning to say that Isita has put back on 400gms of the half kilo she lost in one bad 24 hours last week. This is very good news. It means she’s getting stronger again.

We left St Mary’s yesterday, not to go home but back to Great Ormond Street. Isita is now starting her third week in hospital. The call back to GOSH has been simultaneously reassuring and disturbing. It is reassuring that the oncology team have decided to take her case back under direct control. It is disturbing that this escalation is necessary. One cannot help wondering whether we could have done more, sooner. 

 There are two challenges to be overcome. The first is a persistent fever – cause unknown. The second is Isita’s weight loss and lack of energy. The primary concern has always been that Isita could be suffering from a bacterial infection and this is why she has been prescribed at least a dozen different antibiotics over the past ten days. They are testing her blood, wee, poo, snot every day and so far no bacterial cultures have emerged. This is not definitive. These tests have revealed another adenovirus and a fungal infection, both of which could be causing her high temperature. Further scans and tests are now planned.

While this has been going on, Isita has been getting used to being fed through her nasal-gastric tube. A week ago, in the immediate aftermath of the cisplatin chemotherapy (well known for causing severe nausea), this was almost impossible. She has made great advances since then, and even put back a little bit. Even so, getting the right amount of calories into her and choosing the correct (non-dairy) feed has been a struggle. 

After I arrived with her at GOSH at about 7pm last night and settled her in – a process which takes several hours – I had to make a midnight dash back to St Mary’s to get supplies of the feed powder as all the dieticians at GOSH had gone home and left us with the wrong one. 

It is not that there is one obvious solution. Isita is still suffering from diarrhoea. This could be exacerbated both by the feed and the antibiotics, but both are still needed. They may have to start putting calories straight into her bloodstream via the hickman line to give her gut a rest.

We don’t yet know whether or not Isita will start her next course of chemotherapy next Friday. I doubt it. The protocol allows for a delay, and they will not give her the drugs if they don’t think she is strong enough. Also, they still have to carry out all the tests to see how well the tumour has responded to the treatment. Most of these have been postponed until next Tuesday. It is hard to imagine us going home before then.

Ah, home life. Marta and I have been playing hospital tag. She has done some lengthy stints as I have had some work on. Yesterday, we spent several hours together in Isita’s room at St Mary’s – not exactly a date. We even managed to take a short walk around Paddington Basin. This was the first meaningful time we have spent together in the past fortnight. Ewi and Jake have cooked up plans for both Isita and Jamie on Sunday so that we can spend a bit of a day together. 

The next challenge is to make it possible for the four of us to spend some normal time at home. All of us, including Jamie, will benefit from that. He has made huge strides in his understanding over the past few weeks. This means he is much less jealous and angry than he was, but inevitably as he is a bit wiser he is also a bit sadder. He needs a lot of reassurance too.

The good news? I got a giggle out of Isita this morning while she was listening to a story. Believe me, This is encouraging progress.

A few weeks ago, we thought we had got the measure of this thing. The initial dreadful shock had worn off, Isita’s hair had fallen out and we had adapted to the rhythm of periodic chemotherapy at GOSH, the visits of community nurses at home, and occasional stays at St Mary’s when she got an infection. But in runner’s terminology, we had not yet hit the wall. I think that happened this week.

Several things happened at once. They gave Isita a different set of drugs for this round of chemo which made her feel extremely ill. Since then, she has hardly been able to eat, but administering feed through her nose tube has also made her vomit. She has lost weight and is also suffering from occasional temperatures. So instead of coming home, she has moved to St Mary’s. She won’t come home until she no longer has fever, and also until she can take three substantial feeds per day through her nose tube without being sick. Not surprisingly, after a week of hospital and more to come, she is very glum and listless.

Jamie, thank heavens, is taking things a bit better than he was, but still needs a lot of attention. As gently as possible, we are trying to put him in the picture so that he can understand why we have to devote so much care to his sister. Marta and I are playing hospital tag. This evening, Jamie and I met her stepping out of a taxi at St Mary’s and exchanged a brief hug and kiss before we went home. It is exhausting and sad.

Coming back to the runner’s terminology, what we need now is the second wind. We are more than half way through the induction chemotherapy. The key tests which will show how well the tumour has responded will now take place next Tuesday. If the results look good, and if Isita starts taking in the calories both via the nose tube and by eating normal meals, she will soon be happier and more energetic. She may even be able to start going back to school. There are some daunting elements of the treatment still ahead of us, but if that happens, we will feel like we have turned a corner. Right now we are digging in.

I arrived at Elephant ward with lunch. As I said hello, Isita silently and disappointedly pointed to the white tube taped along her cheek and running into her right nostril. She hardly spoke to Marta after it was inserted last night – the silent treatment. Marta said she was very brave about the rather unpleasant process of putting it in, but it is going to take some getting used to.

She is more chatty this afternoon. Later the doctors will give her a peptide feed through the tube. This is a liquid, partly-digested high-calorie drink to keep her weight up. She is also eating normally, perhaps even trying a bit harder than before, as if to show she doesn’t really need it. Attagirl!
We are now into the hard slog. The novelty and drama has worn off. The strange innovations of cancer treatment – the visits of community nurses at home, the tubes, hospital rooms, and complications of multiple drug administration – have become routine. It is not so much that it is difficult than it is long.

We have to jolly Isita through the day, picking a tricky path between being too indulgent and too strict. She was furious that I took Jamie to Shropshire without her last weekend. It is,however, also hard for Jamie to understand why Isita gets so much attention, special treatment, presents, and iPad time compared to him. Everyone is a bit grumpy. There have been a few outbursts.

The challenge is to keep everything together while the treatment takes effect. The different drug cocktail she is having this time causes more nausea, but the anti-sickness drugs seem to be working. Her small weight loss recorded yesterday was not enough to make them reduce the dosage. We push on as best we can.

Last week started off wonderfully on the back of a Sunday spent at Betchworth. Getting out of London was a liberation.

We came home laden with Cecily’s sensational dairy-free chocolate cupcakes. Then Marta’s brother Juan and his wife Teresa arrived with more jamon. We are all going to get fat.

Isita went into GOSH on Tuesday for a routine test on her kidneys, but developed a high temperature so they kept her in. Juan and Teresa turned into emergency babysitters for Jamie.
On Wednesday they transferred Isita to Saint Mary’s Paddington. We had a little room with a window that actually opened (fresh air – bliss!) and a view if the canal boats in Paddington Basin and Thomas Heatherwick’s rolling bridge. We watched it curl and uncurl like an insect’s tail, as workmen fiddled with its workings.

Of course we had hoped to get out after two days, but she was diagnosed with an adenovirus, which is nothing special, but her temperature was still up. So we postponed the magician and told all her friends they would have to come another day. 

I baked a cake in the evening and Jamie decorated it while having breakfast. The staff on the ward all got together to sing happy birthday. Marta’s godmother Tia Fernanda came, and so did Isita’s godfather Bennet, and Iona with a huge retriever pup teddy, now christened Diggy. We had to ferry suitcases of presents back and forth to the hospital. 

But for her bald head, you could hardly imagine our chirpy daughter was sick. Even so, she had another transfusion and stayed two more nights. Marta bore the brunt of it, because on Friday I had a proposal to write for work, then on Saturday I took Jamie to Shropshire where we fired an air rifle at a target stuck on an upturned wheelbarrow. And that, Miss, is why I didn’t write the blog all week.

A fabulous party organised by the staff of Grand Union Ward at St Mary’s, plus cake no.1

Isita and I are just about to leave GOSH where we spent last night. We are moving to St Mary’s Paddington. With any luck we’ll be home by Thursday afternoon, in time for a scaled down celebration of her fifth birthday.

She came back into the hospital yesterday for a hearing test. She already had a mild temperature and it got worse during the day, so they kept her in. It seems we should expect this to happen between each course of chemo. 

We have had to postpone her birthday party, but looking on the bright side, this means two parties, and two cakes. Speaking to Marta on the telephone this morning she was very very specific on cake decoration instructions.

Isita had a transfusion today as her blood count had fallen below the required level. She came back from the hospital bright as a button and ate a large amount of Maria’s chicken soup and a dairy-free chocolate brownie made by her cousin Venetia, and a banana. Bravo! Marta, on the other hand, who had been with her from morning until evening, was worn out, poor thing. 

It is not just the wear of being in hospital, but the other things which go with it. You would have thought that the hardest thing about chemo would be the side effects from the potent drugs, or being attached to a bundle of medical drips non-stop for 72 hours, or the hair loss. But Isita has reconciled herself to all those things.

What she cannot abide is the horror of having the nurses peel back the adhesive plaster which covers the hole where her hickman line goes into her chest. She also still hates having the daily post-chemo injection of GCS-F into her leg (this boosts the recovery of white blood cells and is a vital part of the treatment). 
Marta said that the dressing-change today was accompanied by half an hour of yelling. It is the same with the injection, even though it is done through a canula which remains in her leg all week. Today she was brave and got a sticker, though. 

Marta is back in hospital all day tomorrow, as Isita has a kidney test to make sure they are not being badly damaged by the chemo. I am taking Jamie out on an excursion as he needs a treat after what has probably been a fairly testing and confusing month and half.

They let us home a couple of days ago. The doctors were happy about Isita’s reaction to the chemotherapy. She is in great spirits. We are, however, all  very tired. Marta and I fall asleep on the sofa straight after supper. That is why I haven’t been posting much for the past few days. All is well!

All is going well so far. Unlike last time, Isita hasn’t lost weight since she came in. She also hasn’t needed any morphine or other painkillers, for the first time in more than a month. We take this as an indication that things are heading the right way and that the chemo is working. 

As I have said before we are very moved by the number of people who are praying for Isita. I managed to get to church this morning and Will, the vicar at St Matthew’s Bayswater is praying. So is Carol at St Michael’s Betchworth. My dear friend Bella has nominated Isita as the person her prayer group is praying for. Hristo and other friends in Bulgaria are lighting candles.

We have been given Zam Zam water from Makkah to go along with the Lourdes water. I’m not quite sure what to do with that, but I ‘m trying to persuade her to eat the excellent ajwa dates from Al-Medinah.

My Christian Science upbringing makes me pray for Isita as a perfect expression of God’s creation in which sin, disease and death have no place. Of course, I also find myself praying for everything to be alright, that we get the breaks we need, the tumour responds to treatment, that she is cured. And at more introspective moments, I simply ask for the strength to deal with whatever we have to deal with. It is not exactly consistent, but I doubt God minds about that.

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