Isita made it out of intensive care on Tuesday, and has been getting better every day. They have taken down some of the antibiotics and tomorrow they will stop the extra oxygen she has been getting through a small nose tube.

Jamie has spent most of half term with his grandmother Coucou, uncle Robert and Tante Joosje. Coucou brought him back last night. He slept in bed with me at home. In the middle of the night he rolled over, threw an arm over me and said “hug”, without even waking up. It was better than being kicked, which is the usual.

I woke early to work, then took him to the Bank of England to change some old fivers from his and Isita’s piggy banks. They wouldn’t take our old pound coins. The guard at the door suggested I take them to Tescos.  No comment.

It was bliss to see him and Isita together in the hospital. She had been enjoying a stream of visitors all day, Aude and Olympie, her school teacher who brought the class mascot, and then her former nanny Michelle. Social girl that she is, company brings out the best in her. 

She has been struggling with intense stomach pain since coming back to the ward, but seeing old friends made her forget it for a bit. The alternative is frequent pushes of fentanyl, an excellent painkiller, but no joke. It is what Prince was taking.

We have also had constant delegations of nurses – old friends – from down the corridor in Elephant Ward. They also came every day to see Isita in intensive care. We feel very loved.

On Thursday, the intensive care doctors experimented with taking Isita off the ventilator. The night nurse Karine called us at seven o’clock in the morning to say the tube was coming out. We rushed over to find her awake but breathing hard.

It was lovely to hear her speak after so many days. We watched her progress anxiously. Her blood gases, which test the balance of electrolytes and carbon dioxide in her system stayed good all day. But this was due to her own effort. She was working too hard. 

In the late afternoon they decided to sedate her and put her back on the ventilator before she became exhausted. There was still infection in her lower lungs preventing her from breathing normally. This felt sad, but far from the crushing shock of the first time. Also, just before, we had heard that her trephines were clear of neuroblastoma. From an oncology perspective, she is doing brilliantly.

By Friday morning, Isita was again on low levels of ventilation, and was also half awake for some of the day, giving a thumbs up or shake of the head to say what she did or didn’t want, and listening to Taylor Swift on the nurse’s iPhone. By the evening she was breathing with minimal support.

We’ll try to take her off the ventilator again sometime today (Saturday) or tomorrow. Everyone wants to make sure she is fully ready. 

We’ll get there. It feels like she is being willed along by the whole hospital. So many of the nurses from Elephant have come down to see her over the past week. We have been around for so long that we meet staff who have been involved in her care in the corridors every day. They always ask about her.

The support of all of you who read this blog is so important to us as well.  A few days ago we got this amazing e-mail from one of Isita’s friends from nursery school.

dear ISITA

I MIS YOU I AM GOING TO RUN THE GREATORMOND STREET RACE TODAY AND WILL DEDICATE IT TO YOU. i REALLY want to come AND VISIT YOU BUT I HAVE HAD a really bad cough for 3 weeks and MY MUMMY SAID i CANT COME TILL I AM BETTER. i HOPE TO COME NEXT WEEK. hOW ARE YOU? Lots and lots of LOOOOOOOOOVE LEO 
As his mother told us, at the start line he said “this is for Isita!” He raised £1,744. Amazing. Thank you, Leo.

Isita came off the oscillator at midnight and is now comfortably on the regular ventilator. She still has a crackly chest, but the hope is with physio and coughing they can reduce that a lot over the next while. All the numbers look good.

We are constantly warned not to expect constant progress. She has taken two steps forwards, but may yet take a step back before getting out of the ICU. That said, the best possible scenario has improved since yesterday. The earliest they are thinking of taking out the breathing tube is tomorrow. One good reason to leave it for a bit longer would be to help get out more of the gunk still in her lungs.

She is on fewer drugs, is no longer artificially paralysed, and will soon be more aware. Marta and I are feeling a bit more cheerful, helped by having bedclothes  from home.

Isita had a good night. They weaned her down a couple of notches on the vibrating ventilator. Her blood analysis was improved, so no need for another x-ray. If the trend continues they may try to shift her to the in-out ventilator this evening. So we are on track.

Marta and I have been given accommodation in the former Italian Hospital on Queen Square. The rubber mattresses we were expecting, but the rubber duvets were a bit of a surprise. Mustn’t grumble. We have a good base for the days ahead.

Isita’s condition has improved marginally over the past 24 hours. She needs less oxygen, the chest x-ray shows improvement from yesterday to today, and her other numbers are stable.

But it is still too early to say what the outlook may be. The very first results suggest it is probably a bacterial rather than fungal infection. We won’t know what the bacteria is for a day or two.  Obviously some are worse than others. 

Isita is currently on the emergency ventilator which keeps her lungs always open and vibrates to circulate the oxygen and CO2. All being well, tomorrow they will try to swap her onto a conventional in-out ventilator but that isn’t guaranteed. 

They need her on the other ventilator before they can wean her back onto unassisted breathing. They will do this as quickly as possible because they are afraid of other infections taking hold via the tubes. However, the pace is dictated by her condition. It could take a few days or many.

We are making sure she hears our voices a lot – reading to her and talking, but of course she won’t remember anything. The midazolam and vecuronium see to that, as well as relaxing all her muscles. All the nurses from Elephant are coming down to visit. She has a lot of support and so do we.

This morning (Sunday) Isita was admitted to the intensive care unit with a severe chest infection. She is stable but fully sedated, and on a ventilator to support her breathing as her lungs are very sick. 

It started with a cold earlier in the week and Friday’s bone marrow aspirate and trephines probably made it worse. She vomited at the end of the operation while coming out of general anaesthetic and may have inhaled some liquid. Or perhaps the cold was more severe than we realised. It doesn’t really matter.

A lot of work went into keeping her out of intensive care from Friday onwards. We had relays of specialists in the room day and night. But unfortunately congestion in one lung spread to both and her breathing became steadily more difficult. She is exhausted.

It has been a nasty shock  to see her little body vibrating from the ventilator, tubes taped into her mouth. It is also a relief that she is no longer labouring and in pain. The doctors and nurses are awe-inspiringly capable and reassuring,  but it is impossible not to be scared. In the worst days of high-dose chemotherapy we dreaded an infection that would bring her down here. Then we imagined the danger had passed. To think that a a few days ago it seemed we were on the verge of being allowed home.

All being well, we expect she will stay on the unit for about a week, and we can then try to get back to where we were. But first we have to get her over this. 

A little earlier today the doctors carried out a bronchial lavage to obtain a sample of mucous from deep inside the lungs. They also used physiotherapy to help empty them.  Now we are just sitting with her talking and reading to her on the assumption she can hear us.

Amidst all this worry, yesterday’s good news that Isita’s bone marrow remains entirely clear of neuroblastoma cells almost passed unnoticed. I even forgot to tell Marta, who learned it from Annie, one of the wonderful Elephant Ward nurses. Yes, the situation is beyond stressful, but as this excellent result shows, we haven’t come this far to be checked now.

Isita is no longer on intravenous pain killers. The specialist nurse turned off the pain pump this morning. All being well, from now on our brave girl will take oral morphine until she no longer needs pain relief at all. This is a massive step forward and something we have been looking forwards to for weeks. It is one of the things which had to happen before we could go home. Now Marta and I need to get trained on home TPN (total parenteral nutrition) i.e. giving Isita all the nutrients she needs via her intravenous hickman line that we currently do not dare touch.

At the same time, we are slowly trying to get Isita gut used to food again – so she doesn’t need to be fed directly into her blood. She went onto the nil-by-mouth regime in late May or early June, meaning that until last week no food had passed her lips for four months. She went without drinking for about two months. I doubt I could manage a few days. As one of the consultants told me a few days ago “they forget how to eat”.

Getting back from that is a massive mental as well as physical effort. We have been trying her out on tiny teaspoons of dairy-free feed and plain mashed potato. It is difficult and uncomfortable, but even though it makes her sick and gives her cramps, we must soldier on

Last Friday, another consultant explained that the mucositis had destroyed all the ville in her intestines. These are tiny finger-like protrusions which absorb all the nutrients as they pass through.  The ville won’t regrow unless they are stimulated to do so by the need to digest something.  In fact, unless she uses her intestines they will deteriorate and atrophy. 

Faced with this chicken-egg reality, we have to give her food, even though it is hard work for her and us. We are back to the endlessly disrupted nights of being woken every hour or more often. During the day we have to constantly motivate and distract. I have drawn up a sticker chart with the daily tasks: use the commode not the nappy, drink the feed, put on the hearing aids, go to the playroom for classes, play the ukulele, and walk around the ward. Movement will stimulate her recovery. We also need to get Isita ready for life at home and going to school, even if it is just an hour a day. She is responding with her usual indomitable spirit.

Although all our efforts are focused on home, we no longer talk about that. This is partly because we sense she is scared of leaving hospital and simultaneously of maybe never leaving. She is facing huge challenges every day in any case. It is also because we are now not sure that she will leave, or not for any significant time. 

On Friday, they start the oncology tests again and they continue next week. So before the end of this month, the team of consultants will decide whether Isita is fit enough for surgery. This is a difficult judgement call. It is very possible that if she is well enough to go home, they could equally take out the tumour. If so, they won’t delay a moment longer than they have to. We are ready for anything.

The wonderful Rays of Sunshine Children’s Charity, which granted Isita’s wish for a super hero party this summer, is on the shortlist for Deutsche Bank’s Charities of the Year 2018-19 partnership. Isita is their poster girl!

She was on the front and back covers of City A.M. last Monday 

and on billboards at Canary Wharf and Liverpool Street station.

I hope they win. The party was a huge motivating factor that got Isita through her stem cell harvest. It really mattered. Thank you again, Rays of Sunshine!

It has been a tricky few days in the hospital culminating in a mini-crisis this evening. Perhaps we have tilted a bit too hard and fast at the exit and Isita is not ready yet, either physically or psychologically.

The doctors and nurses are working on a pair of objectives, each of which would be a huge advance. The first is to take Isita off her intravenous pain relief and to replace it with oral morphine. This would make her much freer and would remove one of the last impediments to our return home. The second is to get her drinking tiny quantities of dairy-free feed – the beginning of the final stage of her post-chemo recovery. As this is likely to cause some stomach pain in the short term, it is not exactly compatible with the first objective. Isita drank 10mls of the feed this morning and was also without morphine for several hours. By late afternoon she was in more pain than she has been for a few weeks. Obviously, we have pushed too hard.

It is probable that getting Isita’s metabolism working again can’t be done without some temporary pain. We don’t really know if the belly cramps are caused by the water she is now drinking in tiny quantities, the feed, the continued healing process, or maybe even by hunger. Real as the spasms are, there is also a mental element to what she is going through. We have spent months explaining that she should not eat for her own good. It is no wonder she is now scared to start again. 

Happily, she is enjoying feeling water in her throat once more. However, we think she is also intimidated about the idea of no longer having the pain pump which gives her pushes of morphine on demand. She was on very high doses, so withdrawal is difficult. Maybe even the idea of going home and away from all the care and support of the hospital is frightening.

She has already thought most of these things through to an impressive degree. One of her earlier inhibitions about trying the liquid feed was that it might have to be administered through her nose tube, which was inserted more than a month ago, so needs changing. I think she would rather starve than go through that procedure. Poor thing. She has weathered so many changes. Just over a week ago, they took out the thaloset needle from her thigh, through which they gave her the anti-bleeding drug. Now, every time she coughs or sicks up, she anxiously scans the bowl for signs of blood in case they have to put it back.

A week ago, the audiology department came to fit her with her ‘super ears’. One of the unpleasant side effects of the induction chemotherapy was that she has lost some of her hearing – specifically she can’t hear higher frequency sounds. Most of the time you can’t tell, but if there is another conversation going on she can’t follow what is happening on TV very well. 

Normally, the news that your child has a hearing impairment might be the worst you get all year. I am afraid for us it has been just another bloody thing. When the aids were fitted, she was delighted. One of her earpieces is sparkly mother of pearl. The other is sparkly red (because it is Jamie’s favourite colour, can you believe it). There are a lot of people we have to thank for this. The audiology department themselves were very gentle and positive. One of the hospital psychologists pointed out that it was no different from getting glasses to fix your eyesight.

“Mummy wears glasses”. 

“She certainly does, my love”.

Then Shirlei, the wonderful play specialist, found that the Children’s Hearing Institute in New York had worked with Marvel comics to create a pair of hearing-impaired super heroes – Blue Ear and Sapheara. Ewi picked up a couple of copies and Jake brought them over. Isita found the idea thrilling. Altogether, something which could have been depressing became quite exciting. Latterly, it has been more difficult to get her to wear the devices much as they feel a bit strange.

Despite the complications, other good things have happened over the past while. Last weekend, Marta and I were able to go away for a night to stay with Charles and Virginia, while Isita’s teacher Kate had a sleepover in the hospital (including a decorous pillow fight, apparently). On some evenings last week, when free of the pumps she was running laps of the ward, and reducing the nurses to tears, as they thought of how sick she was in the summer. Last night a lovely girl called Heather taught her the elements of playing the ukelele and left her one to practise on, courtesy of the Ukelele Kids Club. She’s a natural! 

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