Back at GOSH

Isita’s fortnight at home ended in a bit of a scramble to get back to GOSH before the evening handover. Jamie’s half term has also ended, but he has an earache so he’ll be going to the surgery rather than school this morning. So we were a rather downbeat and grumpy family crammed into an overladen car crawling into London on the M40 late on Sunday afternoon. Isita and I came straight up to Giraffe ward and Marta went home with Jamie and the remainder of the luggage – all of us utterly exhausted.

Even if it was over-ambitious, and the logistics of getting there and back with all Isita’s medical equipment were crushing, it was a thrill to be back in Shropshire after so long. If only we could have spent longer there. Isita hadn’t seen our house there since Christmas 2016, and I only made three overnight trips last year. For a little bit it felt like old times.

During the fortnight at home, Isita has definitely grown stronger and rediscovered what life outside hospital is like. But as normal existence beckons, she is beginning to realise that it should be this way. At our kitchen table warmed by the iron stove, and hungry after running about in the garden, she was desperate to eat the mussels we were having for lunch and not at all keen on the boiled carrots we offered instead. For the first time she asked “Why did this have to happen to me?”

The return of appetite and actual hunger must be a positive sign that her gut is reactivating, but we have to be careful. The other night she ate a bowl of chicken broth and some pasta and then bounced on her bed, which made her copiously sick.

Assuming it is not postponed because of the slight cough and cold she is suffering from, Isita will start immunotherapy this morning. Over the next fortnight they will slowly drip a constant infusion of artificially adapted antibodies into her blood. These have been engineered or trained to recognise and kill neuroblastoma cells, as if they were viruses. The treatment is meant to mop up any remaining ‘microscopic’ disease lurking in her system, which is the main cause of relapse.

The problem is that some regular cells in the nerve endings share the protein flag that the antibodies use to identify neuroblastoma, so they get attacked too. This hurts, and in a small number of cases, causes permanent damage. This morning the nurses have just come in to set up a morphine pump by Isita’s bed in preparation for the start of the treatment. Let’s hope it goes OK.

3 thoughts on “Back at GOSH

  1. So glad you made it to Shropshire. Good for morale and normality, even if shattering.
    I hope the immunotherapy has started, and won’t be too agonising.
    Much love


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