We've had a good few weeks back home, trying to get back to some semblance of normality. Ciara has been doing so well: she's eating well, has lots of energy, and, most of the time, is in great form! We've only need to go up to the hospital once a week since we came home, and there have been no unfortunate incidents to report. It is SO nice have to just visit the outpatient's department (Haematology and Oncology Out Patients or HOOPS) without a stay in the ward, or even the day unit.
A couple of weeks ago we were told that Ciara wouldn't be a good candidate for radiotherapy as the risk to her liver and remaining kidney would be too high. The recent MIBG showed some "hotspots". They are small, and definitely less active than the last scan, but they are still there. At this stage we don't know if they will progress any further, and we can only hope that they won't. However, as the last urine tests showed, there doesn't seem to be any neuroblastoma activity as such. Now that Ciara won't be having radiotherapy, she has started on the next phase of her treatment, which is Vitamin A therapy. These come in capsule form, 8 a day for two weeks on, two weeks off, for six months. She takes them with no fuss at all, much to the surprise, and relief, of all. It dries her skin out quite badly and makes the corner of her mouth sore, so vitamin E is cream is used to ease it. She still looks fab though!
Her tummy is looking much better too, pretty much normal now and all the levels are good, so it looks like we've got the VOD licked. Only a month or so ago I was thinking we would never get rid of it, but Ciara amazed us again. She hasn't been sleeping too well, it's been taking some time for her to get used to sleeping on her own again, and she has bad dreams. I suspect this may be related to the fentanyl patch (painkiller) she has. We're weening her off this soon so we'll see.
Ciara now only has to go up to Crumlin every two weeks, and the "clean diet" was eased today to allow Ciara a very special, and much asked for treat. For the last two months McDonalds were "having all their ovens cleaned" so we couldn't go. Today, it would appear, they had finished cleaning.
