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.