Seasonal Updates

We've got a lot to catch up on since the last post. I've given myself a break from posting for the Christmas period and it means I've got a bit of a backlog to catch up on. In the last post I talked about how Ciara had the catheter removed. Well it took most of the weekend following it's removal for the leaking to stop but by Christmas Eve it had sealed up nicely. There is now a small protective patch that we can probably remove already.

She's been getting increasingly uncomfortable over the last few days and has enough abdominal pain to stop her achieving any kind of good mood. On Christmas Eve, it was a struggle getting her to be even a little excited and she couldn't get to sleep because of discomfort, Santa only had a 30 minute window to deliver presents. During the night there was blood in her poo - whether she was able to get out of her room on Christmas Day was now in question. As it wasn't a huge amount of blood, she was allowed out but if any more blood appeared, we would have to bring her back to the ward. Christmas Morning her haemoglobin count was low and she needed a transfusion but we managed to postpone this to the evening as a transfusion would have taken about 4 to 5 hours. We were over at Ronald McDonald House by 11am, where Ciara made the most of her extra 60ml of fluid she'd generously been allocated for the day, but she was pretty uncomfortable and didn't really get in to the spirit of things, and nor did anyone else for that matter.

After more talks with Ciara's Oncology, and now Gastrointestinal consultants, we found out that the blood in the poo (melena) could be caused by a number things. The GI doctor thought that Ciara had varices, which are like varicose veins in the oesophagus, but he didn't think they would be causing the bleeding as there wasn't enough blood. The varices would have been as result in the increased pressure caused by the VOD (veno-occlusive disease) but the bleeding could have been something else such as an ulcer or gastritis. The only way to be sure would be to perform an endoscopy. If during the endoscopy they found varices, banding of the varices would be carried out to prevent further bleeding.

The endoscopy was carried out on the day after St Stephen's day, under general anaesthetic and after a brief wait for platelets. No varices were found but there were signs of gastritis with blood oozing through the stomach walls. This oozing is either caused by the high back flow pressure from the VOD or just the clinical stress of long-term medication. The internal blood loss will need to be very carefully monitored as it is extremely dangerous. This brings me on to further discussions about Ciara's treatment. We had a good chat with Dr Capra on Friday and he is still in the belief that a conservative approach to treatment is the best way for now, i.e. sit tight. However, after a few more weeks, say mid to end of January, if no progress has been made, or if more complications arise from the VOD, we may be talking about liver surgery. This would be in the form of a shunt to allow blood to bypass a liver vein to reduce backlog. This is not a treatment of VOD - VOD will still be there afterwards - but it does allow us to reduce risks elsewhere. This kind of surgery is not to be taken lightly and is is a dangerous, one-way process. And then, of course, we have to fit in some cancer therapy as well.

As I said earlier, Ciara is getting more a more uncomfortable, and restless nights are the norm. It seems to be all gastric pain, the kind of thing a good poo used to sort out. It's getting harder by the day to make her happy, she's not interested in anything while in pain and the pain is breaking through the codeine. She's fed up and wants to go home. Before we had a mostly happy Ciara with the odd day of down and fed up. It's the other way around now.