Back to GOSH

We left St Mary’s yesterday, not to go home but back to Great Ormond Street. Isita is now starting her third week in hospital. The call back to GOSH has been simultaneously reassuring and disturbing. It is reassuring that the oncology team have decided to take her case back under direct control. It is disturbing that this escalation is necessary. One cannot help wondering whether we could have done more, sooner. 

 There are two challenges to be overcome. The first is a persistent fever – cause unknown. The second is Isita’s weight loss and lack of energy. The primary concern has always been that Isita could be suffering from a bacterial infection and this is why she has been prescribed at least a dozen different antibiotics over the past ten days. They are testing her blood, wee, poo, snot every day and so far no bacterial cultures have emerged. This is not definitive. These tests have revealed another adenovirus and a fungal infection, both of which could be causing her high temperature. Further scans and tests are now planned.

While this has been going on, Isita has been getting used to being fed through her nasal-gastric tube. A week ago, in the immediate aftermath of the cisplatin chemotherapy (well known for causing severe nausea), this was almost impossible. She has made great advances since then, and even put back a little bit. Even so, getting the right amount of calories into her and choosing the correct (non-dairy) feed has been a struggle. 

After I arrived with her at GOSH at about 7pm last night and settled her in – a process which takes several hours – I had to make a midnight dash back to St Mary’s to get supplies of the feed powder as all the dieticians at GOSH had gone home and left us with the wrong one. 

It is not that there is one obvious solution. Isita is still suffering from diarrhoea. This could be exacerbated both by the feed and the antibiotics, but both are still needed. They may have to start putting calories straight into her bloodstream via the hickman line to give her gut a rest.

We don’t yet know whether or not Isita will start her next course of chemotherapy next Friday. I doubt it. The protocol allows for a delay, and they will not give her the drugs if they don’t think she is strong enough. Also, they still have to carry out all the tests to see how well the tumour has responded to the treatment. Most of these have been postponed until next Tuesday. It is hard to imagine us going home before then.

Ah, home life. Marta and I have been playing hospital tag. She has done some lengthy stints as I have had some work on. Yesterday, we spent several hours together in Isita’s room at St Mary’s – not exactly a date. We even managed to take a short walk around Paddington Basin. This was the first meaningful time we have spent together in the past fortnight. Ewi and Jake have cooked up plans for both Isita and Jamie on Sunday so that we can spend a bit of a day together. 

The next challenge is to make it possible for the four of us to spend some normal time at home. All of us, including Jamie, will benefit from that. He has made huge strides in his understanding over the past few weeks. This means he is much less jealous and angry than he was, but inevitably as he is a bit wiser he is also a bit sadder. He needs a lot of reassurance too.

The good news? I got a giggle out of Isita this morning while she was listening to a story. Believe me, This is encouraging progress.

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