Isita is now back at home after what has felt like a marathon third cycle of immunotherapy. Compared to what she (and we) went through last year it was a walk in the park. But we have still spent the majority of the past month in hospital as the pneumonia that she contracted on that lovely hot bank holiday at the beginning of May lasted all the way through to the end including a week of intravenous antibiotics in hospital. It then took a good fortnight to get through the actual treatment.
We started slowly because the antibodies caused fluid to leak into her lungs and this provoked a persistent cough, made worse by the aftermath of the pneumonia. They had to stop and start again and we lost a few days. However, it could have been worse.
It is amazing how cheerful and good humoured Isita is despite being attached to a syringe pump and not allowed out of her room or even far from her bed for a solid fortnight without a break. When they finally disconnected her on Monday evening she begged to be taken outside with her scooter before we got in a taxi and went home. The hospital pharmacy hadn’t sent up the take-home medications yet (they take ages) so she whizzed down to the playground at Coram Fields and went on the swings and the zip wire. It was suddenly obvious how much she was yearning to get outside.
I sympathise. I want to spend every minute out of doors at this time of year, and so does Jamie. At the beginning of June I took him fishing with his Godfather Charlie and friends on the Itchen and he caught a huge trout. He also went swimming in the river. The other thing which makes him extremely happy is having everyone back at home. It is very sweet to see how delighted he is to have his sister around once more.
Although the antibody treatment isn’t painful for Isita, there is no question that it is tiring. Now that she is free, she doesn’t have to run around much before she runs out of juice. We are terrified that she will overdo it and expose herself to another infection. To prevent this, there will no doubt be quite a lot of lying around on the sofa watching Horrible Histories and My Little Pony movies over the next couple of weeks.
To be honest, while we could all do with being out of doors in the sun (or in Isita’s case under her UV protective umbrella as the treatment means she can get sunburnt on a cloudy day), we could all do with a bit of lying on the sofa watching TV too. The amount of medicine we have to give Isita at home means that although it is wonderful to be here together, it is also exhausting. By the time her next cycle comes round we will almost be relieved to be heading back to GOSH and the wonderful nurses of Elephant Ward so we don’t have to worry so much about what she is having and when.
We will also be very relieved when Isita finally has the mid-treatment bone marrow aspirate test. They were supposed to do this before starting the third cycle of antibodies but three times the anaesthetists said it was better to postpone it because fluid in the lungs made it too risky. Eventually, the consultants postponed all the way to the end of June. As it was inhaling phlegm or vomit on waking from the BMA which sent Isita down to intensive care on a breathing machine for a week last October, we were more than happy not to take the risk. Even so, the wait is nerve-racking as we can’t take anything for granted. The best thing is not to think about it, and to take each day as it comes.