Relatively Normal...

We've had a nice weekend, spending quality time with friends who have children who Leo adores and has known all his life, and so both Leo and us adults have been able to get a feel for normality back in Bristol.

Leo has started to get exceptionally tired today and over the course of Saturday but being the stubborn child he is (not sure where he gets that from??), he was determined to play with Charlie and Maisie. The minute we got in the car to return home yesterday and today, Leo's eyes shut and he was asleep before you could say 'Home James'.

Leo's eye is still a cause for concern. When we've been home over the weekend, we've had to resort to staying in the bedroom with the blind shut as the rest of the house is lovely and bright, but not so lovely for Leo and his eye. The docs will check his eye again Tuesday and so until then, it's a waiting game, and my gut instinct is that it's radiotherapy related and so nothing bad to worry about (she says..even though it's worrying every particle of my being!!) I guess because it was his eye where the symptoms of his cancer first started, it's a worry. Plus because he's had this problem for weeks now and no doctor has given a definitive treatment or diagnosis, it's difficult and only natural to worry...isn't it?

Five more days until his second to last chemo cycle and then only three weeks after that and it will be Leo's final chemo for this protocol. We're seeing Leo's consultant here in Bristol on Friday to discuss the how's, why's and why not's of the maintenance chemotherapy, in the sincere hope we can actually make an educated decision.

Here's the dilemma...there's no evidence the maintenance will help and there's no evidence that it doesn't. Okay...so why would we consider it? Well, as parents we'd like to know that Leo has as much medicine thrown at this bl**dy cancer to give him the best chance of survival and cure. However, are we just treating our fears if we choose this path purely based on this?

The other major issues which we'll be able to discuss on Friday are the actual drugs and how they'll be administered. I think I've probably said before that we need to weigh up the risk of leaving his line in his chest for a further six months. Most children who die during treatment, do so due to infections. And unfortunately Leo has had a staph infection every cycle so this could be a major risk. If the chemo is tablet based, urm...well... would Leo, a determined, independent 3 year old, be happy to take a tablet every day? If it's liquid based and requires an NG tube in his nose, will he tolerate the tube or rip it out on a regular basis?

Anyway, all these concerns and too many hours each day to contemplate them so let's leave it there, shall we?

Tomorrow's a new day...