Great uncle Piers

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.

A moment of freedom 

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.

We have a plan

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. 

Good update 

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.

Back to GOSH

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.

Looking for the second wind

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.

Nose tube

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.