Free to come in

Free to come in ❤️ Jamie Isita

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.

The executive suite

We have been moved to the biggest room on the ward – referred to by the nurses as ‘the executive suite’. This is a lovely change for Isita who had occupied the previous room for four months without a break. It is also great for Marta and myself. There is a proper bath that I can actually lie down in.

We are still working on the plan to get Isita home. It will surely not be long, but no one can say how many more weeks it may be. We need to see several days with no bleeding in her gut. The amount has already reduced a lot but progress is uneven. For instance, it increased slightly over this weekend.

But only slightly. In fact, Isita hasn’t suffered a bout of major acute bleeding for more than a week. She has no major infections and is no longer on any of the ‘anti-’ medicines. For the past few days, the doctors have been reducing the quantity of electrolytes (potassium, sodium, phosphate etc…) in her intravenous nutrition. So far, her blood counts have held steady. This indicates that her full kidney function has at least partially and probably fully recovered. This is an essential precondition both for going home and for the surgery which must happen eventually. We have also been slowly weaning her off the morphine and ketamine, but there is a way to go yet.

When Isita’s consultant Giuseppe visited on the grand ward round on Friday he was very pleased with her progress. We spent more time talking about how things will progress when she is back at home than the current situation. It is going to take a very long time – measured in months – to fully reintroduce food. Alongside kidney function, gut function is the other essential precondition for the cancer treatment to restart. This is because the next stage is almost certain to be surgery, which must come before radiotherapy.

The fact that we had a two and half month gap between the end of the induction chemotherapy and the beginning of high dose with no ill effect is a positive indication that we can wait quite a long time before we resume. Inevitably, any delay makes us uneasy but the plus side is we can look forwards to a lengthy stint of home time. Boy, do we need it.