At home for the day

We have made an incredible breakthrough in the past few days. Isita is now off all intravenous pain relief, and indeed off nearly all intravenous drugs. The only thing going through her hickman line is the TPN, in other words the nutrition, which keeps her going until she can eat properly.

This means two things. First of all, she can come home for a lot of the day. Secondly, the doctors have put in an application for Marta and me to be trained in administering the TPN. We will probably start next week. Once we have mastered it, we can bring Isita home completely. Contrary to our earlier expectations, there is a good chance that we can achieve this before Christmas.

The main things which could change this are another major infection of the sort which sent Isita down to intensive care a month ago or – at the other extreme – if her platelets level recover sufficiently that the surgeon agrees to operate. The doctors are pretty certain that the latter won’t occur before the new year. We have begun to allow the hope of spending Christmas all together here at home to seep into our hearts. Even if we don’t quite make it, we are already enjoying the great pleasure of home life for a few hours every afternoon.

If Marta and I and Jamie are affected by this, we can only imagine that the impact on Isita is almost overwhelming. It has been so many months since she was here or even outside the ward. She has enjoyed it, but she is also a little bit fractious, which may mean she is scared.

Encouraging as it is to see her so fit and lively, she has some difficult hurdles yet to overcome, not least to start eating again. The dribble of formula we give her every day has increased in volume but is still tiny. The challenge is now as much psychological as physiological, and the two are intertwined. If we switch on the feed when she doesn’t notice it goes OK. As soon as she notices it, or if something else upsets her, she is sick, and sometimes a bit of blood comes up. The fear becomes very real.

The first results of the colonoscopy and endoscopy she had last Friday have shown that the poor girl is suffering from oesophagiitis – an inflammation of the oesophagus. This is more commonly seen in adults after chemotherapy. She also has a lazy stomach. So although there is no physical blockage, her motility is poor. This means that the contents of the stomach hang around for a bit instead of passing rapidly into the small intestine. If her stomach is too full, she is sick, and her sore food pipe means this is particularly unpleasant. We may get further diagnoses when the results of the biopsies come through at the end of this week or the beginning of next.

There may be a drug that will increase the motility of the gut, and some sort of physiotherapy might also help. They may also put in a longer nasal gastric tube which will extend through the stomach into the duodenum.

Heaven knows if she will be able to eat anything over Christmas even if it is just chicken broth or mashed vegetables. Our hope is that the next few weeks of home life, even perhaps some time at school, and a few outings around the city will give her the fillip that is needed.

It has been a turbulent few days. A couple of people have arrived at Elephant Ward only to find no one in her room and have been wonderfully happy about their wasted journeys once they have worked out where we are. We depend so much on that generosity of spirit and can’t wait for the time when we can greet at home everyone who has lightened the burden of these past months in the hospital.

Possible next steps

There are two ways that Isita’s treatment might progress over the coming weeks. If the platelet level in her blood stabilises within the next fortnight, her consultant Giuseppe will put in a request for surgery. If her platelets are still too low and the surgeon won’t do the operation, Giuseppe will consider going straight on with immunotherapy.

The excellent news we got last week does not mean we can afford to give up on treatment. Children who have most of their tumours removed do much better, on average, than those who don’t. The doctors will operate as soon as it is safe to do so.

Immunotherapy normally comes right at the end to treat any remaining microscopic disease. However, it can be effective against primary tumours. Incidentally, the MRI from a couple of weeks ago showed that Isita’s main tumour shrank slightly, a welcome outcome that was not expected. We thought a lot of it would die, but its volume wouldn’t change much.

While we wait, we are focused on getting Isita’s digestive system working again. Both Marta and I feel she is more comfortable and more cheerful than she has been for a while. We hope this is a sign her gut might be tolerating the tiny drips of formula we are giving her.

On Friday, she will have a colonoscopy and endoscopy with biopsies to investigate further what is happening to her insides. This could lead to a change in diagnosis and the introduction of different treatments. At the same time, she is being slowly weaned off intravenous pain relief, and doing regular physiotherapy. The possibility of being home for Christmas has crept back on to the agenda, although obviously not if Isita has an operation.

Dare we to hope?

Isita’s MIBG test has come back clear. There was some small uptake of the radioactive dye by the primary tumour, but no sign of cancer elsewhere. That small uptake indicates ‘treated disease’, so perhaps not entirely dead, but not active either. Our understanding (which still must be confirmed by the consultants and possibly further testing) is that it may continue to regress (the technical term is ‘involute’) without further therapy.

It isn’t quite job done, but four months and counting after high dose chemotherapy, this is unbelievably good, truly excellent news. We can’t say the cancer has gone, but for the first time this year we can dare to hope.

We don’t yet know what the next steps are. If Isita’s platelets stabilise, is there still an argument for carrying out surgery in case some of the tumour is still living? Perhaps. There may be other important treatments to stop the disease coming back from currently undetectable stem cells. High dose and the stem cell transplant should have eradicated much of that threat. But as I learned at the brilliant Solving Kids’ Cancer Neuroblastoma Parent Education Conference last weekend, it is a devil of a disease.

Dare we to hope? It is such great news, we should probably be rushing down the corridors screaming hallelujah. But we are not doing that yet, maybe because we have also learned today that there is very little chance of Isita being discharged before Christmas. It isn’t surprising as her gut is still painful and barely tolerating tiny feeds. While that is going on, we can’t relax. We have to keep going.

Next week they will carry out an endoscopy and colonoscopy with biopsies under general anaesthetic to investigate what’s happening with her insides. The fabulous news about the cancer means we probably have time to work it out, and time is what it needs.

She is well over the shingles though still a bit itchy. So as the days pass, we try to make things as fun as possible. As always, we’ve had a lot of help. The other day, Isita’s former nanny Michelle had a sleepover with her. Isita was in heaven. Michelle has given her a ukulele shaped like a skull.

This (the sleepover not the uke) helped me with my work which is full-on right now. An added bonus was that Marta and I could put Jamie to bed, and make him pancakes for breakfast. He has borne up so well this year, but he needs us more and more. The other day he was crying with the fear that Isita might never come home.

Then, a couple of days ago the wonderfully inspiring GOSH artist Matthew spent the whole morning making a beautiful painting with Isita alongside Andy from Cbeebies, who must have the most charismatic smile anywhere on TV, and who is equally charming in person. Basically he is the John Noakes of today.

Their creative endeavour is going to be broadcast on Friday 1 December – not sure what time. I’ll let you know. I have to say she was a natural, totally unphased by the camera. Dare I say it? She’s got a future, that one.


I haven’t updated this blog for about 10 days. Sorry about that. Things have been busy at work, which is good, and also busy in the hospital – generally good but not entirely. The main problem: Isita has got shingles. No, I wish I was joking. This is  chicken pox – the sequel. Now that she has the immune system of a new born babe, she has caught it from remnants of the virus in her system from a couple of years ago.

She has been having an anti- viral to get rid of it and a few days ago she had a huge double injection into both thighs at the same time. Poor her. Poor nurses who had to administer it.

On top of this, for most of last week she had a rhinovirus – not that serious – but all the doctors and nurses had to wear masks which is a bit off-putting.

We are nearly over all that. Every day Isita has physiotherapy. She is weak and uncomfortable a lot of the time if not in pain. We have started tiny feeds through her nose tube. On Monday she had 15ml over five hours. We’ve got to 25ml today. She gets cramps but we have to help her through it. 

To put this in perspective, if Isita were to survive only on the feed and not the intravenous drip, she would need to take in about 1.3 litres per day. We’ve got quite a way to go.  For Marta and me this is the priority. We have to get Isita eating and moving again.

What about the remaining cancer treatment, you might ask? At the moment, surgery is out of the question. Isita is still losing platelets needed for blood-clotting. The poor state of her gut also rules out radiotherapy, which in the worst case could make her current tummy problems permanent.

While this is worrying, we have to hold our nerve. Since she started chemotherapy all the tests have shown Isita free of disease apart from the main tumour, large parts of which are now calcified – dead. We have two more tests over the next fortnight. If they are clear four months after we started high dose, then we must hope she will stay clear for even longer.

This is why we have to get Isita eating again, to get her moving, to get her home, to get her strong enough to deal with whatever comes next. 

Now here is something fun. Remember Isita was poster girl for Rays of Sunshine in Deutsche Bank’s vote to choose its charity of the year? They won! Hooray for Super Girl!