Gavin: The facts as we know them

Sonny isn't improving but he doesn't seem to be deteriorating either. The main concern, alongside a very high pulse and temperatures is his brain function, which wavers between being lucid to forgetting what happened an hour ago. Sonny has been this ill before, but the change in his coherence, the odd things he's saying and watching him trying to comprehend why he can't put a sentence together is a new level of distress for us all. We are reassured that the EEG he had today showed no signs of damage and Infectious Diseases are busy trying to grow precisely what has caused the meningitis so they can treat it acurately. There is the possibility that this is being caused by his underlying disease which, although could potentially be 'switched off' with more chemotherapy, will also kill all the cells that have been infused to fight the cancer throught the DLI, putting us back to square one.
Our consultant feels that as the lump in his chest isn't growing dramatically and that his EBV levels are slowly coming down that there are signs that the DLI is working and we should therefore continue as we are despite how awful this is as it may be our only chance. Unfortunately, as the only child to ever undergo this treatment that is pushing the boundaries of medical science, they have no frame of reference. We are reassured that he isn't in ICU yet and he has bouts of talking about Arsenal, but we've also been told that it is now 'appropriate to be very concerned'.
The picture below demonstrates the level of attention he's receiving on an hourly basis. Our nurse today decided to see if Sonny and her could read each others minds by attaching the EEG probes to each other's temples (no small task). The clinical specialist, a busy lady who had a screen full of other kids she had to do today played along for the 15 minutes as our nurse thought of a question and Sonny mumbled answers. If any nurses are reading this, take note. This is care.