Romy has been looking puffy for a couple of days and had extreme pain on 7th December, so much so that she was writhing around in pain, screaming, hitting herself and begging me to make the pain go away. Romy has had pains in her tummy throughout our time in hospital and the 5 weeks prior, but nothing ever like this. It was distressing to watch and as a result Romy was put on 24hr intravenous morphine to manage her pain. Romy had an x-ray and ultrasounds to investigate. On 9th December, although not apparent from the ultrasound, Romy was diagnosed with Veno Occlusive Disease of the liver, normally a side effect of the high dose chemotherapy she is due next year. It was a big setback to have this so early on as it means the Drs hands are really tied now on what chemotherapy drugs they can give Romy. It also means she will no longer be able to have the high dose chemotherapy next year in the way planned. As a result of the VOD disease Romy had fluid on her heart and lungs and was really quite poorly while medication and extreme fluid restrictions got this under control. Romy has never been a big drinker but even she found being limited to drinking 30ml of fluid in 24 hours very hard.
-Helen