Month: March 2018
Breaking radio silence
Isita is very well and so are we all. This is a great thing to be able to write. I have been meaning to put it down in words, to catch up on this blog evening after evening, but the days slip by. We have spent an entire week at home after a 10-day stretch in hospital for the first session of immunotherapy, which went better than we could have hoped. We are catching our breath and even beginning to dare to hope.
Today we haven’t stirred from the house and it has been wonderful. In the morning after we had eventually got up we played Ludo and then ‘What’s the time Mr Wolf’ and then ‘Un, dos, tres, pollito Ingles’ which is the Spanish version. In the afternoon we watched a movie. Then Marta and Isita fell asleep on the sofa. Isita is sleeping a lot (so is Marta to be honest). We are recovering after a year of exhaustion.
Not that we are finished with medical things, even during these lovely periods away from the hospital. The day starts early with a handful of medicines that we have to put through Isita’s NJ tube: a couple of things to reduce nausea, gabapentin, which she will have for the next six months to minimise the effect of neuropathy, sodium bicarbonate to correct the acid level of her blood as her kidneys are still not working perfectly, and cis-retinoic acid – a kind of vitamin A which prompts neuroblastoma cells to differentiate into normal healthy cells.
We can’t put them all through at once. By the time we have also taken down her paraenteral nutrution, put on vitamin E cream to mitigate the drying effect of vitamin A on her skin and organised a milk feed, a good three or four hours have passed and it is time to take her to school. She goes for a couple of hours in the week. There are more meds in the afternoon and the evening.
Marta and I are both working, so you can imagine, there isn’t much time for anything else even though we have some wonderful help. The period of the amazing aunties who spent so much time looking after Isita while she was in hospital is gradually drawing to an end as Isita gets better and her needs change. Of course we still need help, and quite soon we should be getting some professional nursing assistance to take away some of the stress and pressure of giving the medicines.
The most important thing is that we are spending time together as a family. As we have spent more time at home Jamie has begun to speak more about the strain that he has been under. The poor boy has been struggling with feelings of isolation and loneliness, which sometimes prevent him from sleeping. One of the positive ways that he has dealt with this is voracious reading; less positive has been equally voracious use of the iPAD. It is now obvious why he sometimes has such tantrums when we take it away from him. It is going to take a long time to get things back to normal, but we will succeed.