The situation here at GOSH is not too bad although we wish we were at home. Isita hasn’t had a temperature for two days and is pretty lively. We all went out for fajitas (although in the end she didn’t eat much). Simply putting her in the buggy and taking her out for a couple of hours was a great boost to morale. Jamie had spent the entire week with his grandmother and various cousins in Shropshire and in Surrey, which he loved. So he and Isita were thrilled to see each other again, even though they express this best by watching TV together on her bed.
The most troubling aspect of Isita’s condition right now is that she gets frequent and intense stomach pain and she still is suffering from diarrhoea. Whether she has an inflamed gut because of an infection or simply because of the cumulative effect of the chemotherapy we don’t know. Apparently, it is not uncommon by this stage in the treatment. We have met the parents of a boy who is about a month ahead of us, who said that he had sharp stomach cramps towards the end of the first phase of chemo. The doctors are looking into it. In the meantime, she is back on pain-killers.
As we become familiar with the side-effects of the treatment, we understand more why the treatment of Isita’s fevers has followed the pattern it has. While it seemed obvious to us earlier this week that the adenovirus had made a comeback – and she is now being given the anti-viral drug – the doctors are not able to ignore the potentially lethal threat of a bacterial infection. They have to treat the most dangerous threat first, even if they are not sure it exists.
This time, they have got on top of the problem much more quickly than before, and she is putting on weight. We are reconciled to the likelihood of spending much more time in hospital than at home between now and late July.
We have come to realise that Isita is particularly sensitive to the toxicity of the chemotherapy. If only it were the case that the tumour was also more susceptible as a result. Depite the fact that it is genetically part of her, there is no evidence of that. Never mind. The focus now is to get her through the fifth and final cycle, which is due to start in six days’ time. Closer to the time, the consultants will decide whether to reduce the dosage. Obviously, they want to give her the maximum she can handle, but they don’t want her to fall apart. We are sure they will make the best judgment.
This question draws our minds forward to the next steps. In mid-May, they will carry out an array of tests to see how well the treatment has gone. Ideally, she will not need extra chemotherapy and they will move on swiftly with surgery. She needs to be ready, which is why less chemo might be better next time. Marta and I are focused on keeping Isita strong, as we have been since the beginning. That is all we can do.