They have taken down the red infection control notice from the door. We’ve put our own version up in its place. For the first time since February, Isita is officially free of bugs and no longer in isolation. This means she is allowed into the playroom, which happens to be next to her room, but which she had never visited until two days ago. She can now be with other children in the hospital. In all this time she hasn’t met a single other child also undergoing treatment. We’ve set up a play date with a young boy on the ward.
Today, God willing, they will take down the ocreotide, which helps reduce blood flow to her gut. This dribbles into her thigh, day and night without a break, via a thaloset, a small needle that is swapped to the other leg every three days. The procedure is agonising for everyone. The needle itself is a perpetual source of discomfort and worry. The prospect of not having it any more thrills her more than anything, and will make her more mobile. Let’s hope the doctors don’t change their minds.
I don’t see why they would. Her gut is better than ever. It is still painful, but we haven’t seen evidence of bleeding for a long while. She is very happy and cheerful most of the time, back to her old self, in fact.
Our attention is now focused on the other two permanent infusions that Isita is tethered to at all times. The process of weaning her off the morphine and the electrolytes in her TPN intravenous nutrition seems interminable. Every time we think we’ve spotted the end point it recedes again beyond the horizon, not because of any complication or set-back, but because there is so far to go.
We knew Isita was very sick coming out of the high dose chemo, how could we not? But it is only now after the quantity of painkillers has been cut by half and are still at high levels compared to normal dosage that the enormity of what she has suffered is coming home. It is like looking back up at a cliff one has just come down. As I learned from my good friend William more than a decade ago, getting down a mountain is as hard, in its own way, as climbing up, especially when one is so damn tired.