Isita is in perfect form, but the surgeon has a bad cold and fever and this isn’t the kind of procedure you can delegate. We are going home. It is disappointing, stressful and exhausting – especially for Isita who has gone through all the build up in hospital overnight, including discussions about canulas in her wrist with the anaesthetist this morning. Despite being terrified, she was up for it.

Of course it is the only choice, and the doctors were very apologetic although it is no one’s fault. They have said we’ll come back later this week or early next.

A couple of weeks ago I was tucking Isita up in bed when she asked me an important question. “Are they going to put me asleep and take it out?” I had to tell her yes. The prospect of the surgery has been on the horizon for a long time, but the date had been confirmed just a short while beforehand. Marta and I hadn’t talked about it in front of her, but she had picked it up. I couldn’t tell an outright lie.

Marta was already in communication with the psychologists at GOSH to work out how to break the news and prepare her. So, as gently as possible, she told her what was going to happen. She is being admitted to GOSH on Monday 29 October and the operation will be the next day. She is scared about waking up in the middle and about the stitches coming undone, but is being incredibly brave about it. She has been counting down the days.

Of course, we haven’t told her everything and don’t know everything ourselves. For instance, we know the incision will be quite long and will be about two finger widths above her belly button. We know the whole operation could take up to six hours; that she will be in enough pain afterwards to warrant an epidural; and that she won’t be able to eat or drink for a few days afterwards because the trauma of the operation will temporarily shock her bowels into a kind of paralysis. 

But we don’t know whether or not they will be able to take out all of the tumour, nor whether or not they still expect Isita to lose her right kidney. Now the tumour is so much smaller it would be wonderful if that were no longer necessary. Despite all the scans, it is possible the surgeon won’t know the answer to a question like that until she sees the reality with her own eyes. We will meet her next Monday when Isita is admitted and then we’ll find out more. 

A few days after we broke the news, I was again tucking Isita up in bed when she asked me an even harder question: “what if I am not telling the truth about Lola?” Lola is Isita’s fairy. She came out of one of those wooden fairy doors that we bought for her for the Christmas before her fourth birthday and flitted about happily in her imagination all that year, but only really took on a personality, a certain authority, protectiveness and occasionally judgemental attitude when Isita went into hospital. Often, after some negative development in Isita’s day-to-day world, we have been informed courtesy of Lola, that “normally in fairyland it doesn’t happen like that”. Not that everything is perfect there. Lola and her fairy children have themselves gone through some difficult experiences which Isita is well able to identify with.

The person who has had least patience for this hard to pin down, but slightly bossy extra presence is Jamie, but now that he is wised up about Father Christmas and the Tooth Fairy, not to mention the Easter Bunny and the rest of them, he understands that Lola is our friend and ally. Even if she is not going to be around for ever, Lola has helped both Isita and the whole family deal with some very difficult stuff. 

On the assumption that Isita doesn’t remember much from before her fourth birthday she only has one year of ‘normal’ life to compare against nearly two years of medical treatment. Her experiences over these two years have made her very sophisticated in some respects, for instance in the way she communicates with adults. But in other respects they have held her back. She looks back to her four-year old self for comfort, and has missed out on some experiences we take for granted. Not long ago we realised she didn’t know how many days are in a week. There aren’t weekdays and weekends in hospital. She hadn’t picked it up. So for the past three months at home and back at school she’s been on a steep learning curve. At the same time, she is dealing with all the usual things that any six year-old girl has to deal with, such as learning that fairies are not real.

The trouble is, right now we need Lola. We don’t want her to go. So I said that although Lola wasn’t real to other people and we can’t see her or talk to her, she will nevertheless be with Isita for as long as she needs her. Sweetly, this seemed to satisfy her and she went to sleep quite happily.