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.