It is immensely difficult for us to keep our patience and calm in this period of waiting. As the doctors have discussed Isita’s case with us, our realisation of how complex it is has grown. We are no longer in the standard protocol for treating what is already a difficult and complicated disease. Isita has, for instance, fallen out of the medical trials that she was originally participating in, because her treatment has breached the parameters. This is an uncomfortable feeling. The fears and the risks are ever present in our minds. But despite everything, Isita is indomitable and has attracted huge admiration on Elephant Ward. Last night one of the nursing assistants was telling me how much Isita makes her laugh. “She’s an inspiration!”
Although it may be quite dull to have a father banging on about how amazing his daughter is, in this case I have no choice but to continue. It seems nothing can get her down. She is now on the third or perhaps the fourth day of ‘nil by mouth’ – water only – a treatment which the gastroenterologists hope will give her shattered gut time to recover and repair itself. She gets all the nutrients and energy she needs through her intravenous line. Of course, she is hungry. Even so, she remains the happy cheerful girl who bosses the nurses around and who impresses everyone with her ability to handle whatever hospital life throws at her.
When she gets off her ‘TPN’ every afternoon we take her down to Coram Fields to swing as high as she can on the swings and to zoom down the zipwire. Over the past week, Marta and I have had difficulty in reconciling the energetic fighter whom we see every day, with the fragile medical conundrum that the doctors see in their analyses of blood, urine and stools. In general, we have decided that we see her better.Happily, it seems that we may now be returning to a point where medical decisions can be taken and advances made in her treatment. Alongside the fundamental objective of eradicating the tumour, we have to get rid of the last traces of adenovirus, fix Isita’s guts and allow her kidneys to recover more of their function.
Today we were told that a more effective anti-viral drug with fewer side-effects is even now on its way to GOSH from the USA. Once it is administered, it may take a couple of weeks to complete the job. The medical team may decide that Isita should continue ‘nil by mouth’ to reduce the danger of a recurrence of diarrhoea during this period. Or they may permit a very strict and gradual return to eating. The kidneys must be allowed to recover on their own.
As we are now more than a month away from the last cycle of chemo, they may decide to put her on another cycle simply to keep the tumour from reactivating. We should see movement in most of these areas over the next few days. It is certain that the main steps towards the stem cell harvest and the administration of high dose chemotherapy won’t be taken for at least a fortnight.