We are involved in a kind of race between the different elements of Isita’s treatment. If nothing else changes, on Monday 8 January, Marta and I will start training to administer the paraenteral nutrition (TPN) at home. Officially, this is a fortnight course 10am to 4pm daily. It is not hard but there is no room for error. Once we have learned, we can take Isita home and treatment continues from there.
One of the things that could change this picture is that Isita’s platelets could increase to the level that makes surgery possible. They need to be above 100. Having stuck stubbornly at just over 50 for the past while, they went up to 92 in the most recent blood test, the results of which arrived yesterday. If she is clear for surgery, we don’t think the doctors will delay.
The other thing that could change the picture is that Isita’s small intestine could start to function better. In the past few days we have roughly tripled the amount of feed she can take in a day from what was, admittedly, a low base. Yesterday she had 170ml, and only vomited once, quite early in the morning. It is impossible to guess how much feed she might be able to take 10 days from now, let alone in 24 days time when our TPN training would finish. Will it be necessary by then? The plan is , eventually, to swap the NJ tube for a ‘peg’, a tube directly into her abdomen, which will make it easier to administer the feed.
The final element of Isita’s treatment that will be affected by these various scenarios is immunotherapy. It would be better if she had surgery before rather than afterwards. But that has not been on the agenda until the recent news about the platelets. Immunotherapy and TPN training are also incompatible as Isita must be free of all IV treatments while the training goes on.
The senior oncologists want to push on as quickly as possible with whatever they can, and have been encouraging us to increase the rate of feeding in the hope of weaning Isita off TPN. The only option not on the table is radiotherapy as Isita’s gut is way too fragile to risk the collateral damage. But apart from that, we have to be ready for anything.
I have just come back to the ward from the beautiful midnight mass in the hospital chapel. There were a few other participants like me in their pyjamas. We are celebrating Christmas this year in a more cheerful mood than we dared hope. Thank God for this hospital, and thank you for your prayers.
Isita is fast asleep. Marta and Jamie left the hospital a few hours ago and she conked out almost immediately. She still experiences pain and vomiting morning and evening, but the nights are calm and the days are fun so long as we fill them with distractions. Ever so slowly she is getting better. The day before yesterday she spent the afternoon in Surrey with her cousins and grandmother – the first time in months. We’ll be back there later this morning for Christmas lunch.
On Christmas Eve, all four of us went to the movies to see Ferdinand – the animation of a book by the American author and illustrator Munro Leaf about a Spanish fighting bull more interested in just sitting and smelling the flowers than fighting. They spun out the story a bit, but it was nice to see even a cartoon version of those rolling oak-covered Andalusian hills where we were just before Isita was diagnosed last new year. Or was it a hundred years ago?
The cabbie who took us back to hospital via the Carnaby, Regent, and Oxford Street lights only took half his fare. Up in the room we had a family meal. Isita is still a long way from eating, but feeds us as if we were her children (“Here comes the aeroplane!”). It’s her way of joining in. When there is something she likes, she asks if she will be able to eat it once she is allowed.
I honestly don’t know how she has the patience and fortitude to break our bread with her own hands and put it in our mouths but not her own. All we need is for her body to obey her mind and spirit and she will be fine.
We haven’t been home as much as we wanted this week for various reasons good and bad. Good: on Tuesday we all went to the GOSH Christmas party, where Isita did a lot of dancing.
Bad: on Thursday they had to reinsert the nasaljejunal (NJ) feeding tube into her small intestine – every so often she retches it up. However before that (good) she met Father Christmas and some reindeer.
And then yesterday (very good) she met some pilots from the Red Arrows and is going to be on TV again. Marta said they were incredibly handsome. Jamie and I had to stay at home as he has a tummy bug and is banned from the hospital for 48 hours (bad).
Tummies – what a mystery they are. The doctors can’t say how long it will take to heal the chemo-related nerve damage causing Isita’s stomach not to work, or even whether this will ever happen. Every so often in Isita’s wretched journey we bump up against the limit of what medical science can achieve, and this is such a time.
The NJ tube bypasses the problem and we pray it will make her much more comfortable. There are signs that her intestines are starting to absorb the feed. What comes out is browner than before and less comes out than goes in (it is all weighed). But every time she is sick there is a danger of the tube coiling back into the stomach.
So take last night. Isita was sick and her retching was curling an inch of tube out of her nose. Had this dislodged the end from its place in her intestines? There was no way of telling. This morning’s feed hurt. But why? If her vomit were milky it would mean the tube was displaced. We pushed on. We had to. She was sick – the vomit a bit bily a bit milky, so maybe OK. I halved the rate and pushed on some more. She’s OK so far. We are going to put the pump in a backpack and go to the movies. Wish us luck.
We are in a new phase of Isita’s treatment and it feels like a new phase of life. We get to spend happy afternoons at home together. Isita helps in the kitchen, watches movies with Jamie, joins in a game of Monopoly. A couple of days ago she put on her Pembridge Hall tracksuit and spent an hour at school. The day before Marta took her to join a movie outing with some of her friends. They took it in turns to hold hands going down to the Electric on the Portobello Road.
Yes, she gets tired and needs the wheelchair, she spits into a cardboard bowl and sometimes vomits. She has to wear a nappy. These continuing reminders of her condition will be around for a while but are slowly receding. Every day she seems to have a bit more energy, and it may also be that her gut is settling down thanks to a new feeding tube.
This is the development that Marta and I are watching most carefully and nervously. They put in the NJ tube on Wednesday. Unlike her previous NG tube which ended in her stomach, this one passes through into her small intestine. This is needed as the investigations from a week ago showed Isita’s treatment has caused some paralysis in her stomach, which could take a long time to heal. The best thing is just to bypass it for now.
The first feed we put through it on Thursday wasn’t successful – everything came out every which way. On Friday we took a rest. On Saturday she had a double quantity of feed with much less discomfort and upset than before; the same today.
But get this, all day today and all last night she didn’t do a poo. After months of chronic and frequent diarrhoea this is a revolution. Is she starting to digest?
We have been monitoring this with obsessive care. The photo album on my mobile is crammed with images of her productions – am I not the apotheosis of a proud father? Don’t worry, I promise not to show them to you, it is hard enough to persuade the doctors to look. God willing, soon I can delete them all.
In case you missed it, here is Isita and Matthew her hospital hero at GOSH – from 1:40. Hospital Heroes- Cbeebies
Isita is on telly this afternoon (Friday). 3.45pm Cbeebies.