Stuffing well and truely knocked out

Ciara has been feeling worse and worse over the last couple of days, with sickness and diarrhea taking its toll. Holding a sick bowl while grabbing a bed pan while holding in a nose tube while putting on gloves while wiping her mouth is quite a trick! She hasn't eaten anything for the past few days and today she's even had trouble keeping NG-fed food down. Ciara is now neutropenic - no infection fighting neutrophils - and her temperature has spiked today. But even with the sickness and diarrhea she is maintaining input so should be getting enough calories and fluid.

She seemed very down this evening but I did manage to get her to join in in a reading of We're Going On a Bear Hunt. She says she not sad, just not very well. Most of the time she just wants to watch a film or Walking with Dinosaurs and doesn't have the energy to do much else. We've been raiding newsagents for the crappy €2 toys you get there so she has something new to open pretty much daily. Today I bought her a magnetic fishing rod game. It gave her about 30 seconds of fun in the bath but did distract her from the fact that she was HAVING a bath.

She's been having a few aches and pains in her joints recently and this has caused some worry, however the consultant spoke to us at length about our worries and has eased our minds somewhat. Dealing with neuroblastoma is all about probabilties, and if he can tell us the likelyhood of this or that, while not ruling anything out, does allow us to keep our fears in check.

Our anxiety was triggered by a little girl who has just completed the transplant treatment that Ciara is currently going through. She's about Ciara's age and also has neuroblastoma. After spending a good number of weeks in transplant, she was able to go home a couple of days ago. However she was back in the unit yesterday after they discovered something on her liver. At this stage in her treatment it is a devastating development. Today her mum and dad were waiting on results of a rushed scan carried out last night and our hearts have gone out to them.

This has reminded Yvonne and myself of the game of chance we are unwillingly playing and the risks and possible outcome of the game. We are comforted though by the knowledge that after every good report, Ciara's chances of getting through the treatment greatly improve. I believe now that any bad luck we've had in the past was for a reason. We're saving up all of our good luck for when we need it most, and the lottery win will just have to wait for a few years.