Long Day

Leo had a new line put in today and was quite upset about it - even more so when we took him down to theatre and this time we walked him straight into theatre, as opposed to a nice small anaesthetic room. He was trembling like mad in my arms and really very scared, and both PJ and I admitted we would have been the same. There were lots of people in scrubs in there and large lights and machines and things..poor Leo. He had some gas and air to put him to sleep initially and then about 90 minutes later we went down to collect him from recovery and we could hear him screaming from down the corridor. Sometimes he just won't let anyone near him apart from PJ or I. Mind you, we do have to remind ourselves that he is only three and a half.

We've only just got back so it's been a long day for us all, especially Leo. His chest kept bleeding so the nurses kept waiting for it to stop or at least recede before discharging him. Now we're home, it's funny to say he's being a typical man (have to look for humour where you can get it!); I keep offering him Calpol to help his neck and chest feel better but to no avail. What is it about men and pain-killers?

I have deleted the post of yesterday as it kind of defeated the object as the post itself probably offended people in and of itself. I've come to the realisation that there are just some battles you cannot win and I am not going to waste any more energy on things where nothing I do can change people's minds. Leo is my and our primary focus and so he needs positive energy around him 150% of the time. So that's how it is.

My mission is to keep Leo happy and comfortable and to get through this time in as good shape as possible. Feeling like I am going mad because others judge what we, as Leo's parents do, as purely being down to me or my thoughts, is counter-productive. What I will keep on record is that PJ and I are and have always been agreed on what we do with Leo and how we keep his emotions steady during the good days and the bad. Nothing has happened from the start of this where we've not been agreed, from where to buy lunch to what we should do of an evening to whether we need to call the doctors about his line infection.

So tomorrow's another day...off to Surrey for a clinic appointment so we'll find out more about radiotherapy and its overall effects. Had a good read of Leo's notes today (volume 1 - they're about 5 inches thick so volume 2 will start very soon, no doubt), and realised that as his tumour is alveolar, he will have the highest dose of radiation. The initial tumour was also 4.3cm cubed and those with 5cm cubed have a 10-20% chance of survival so we have to think him lucky he's not in that group.

We have another appointment at the Royal Marsden on Friday which includes planning the therapy with the actual machine they'll use as well as producing a shell cast for him to lie still in for each of the 30 sessions. He'll have a general anaesthetic for each session so he won't have to worry about wriggling about!

Chemo again this weekend, this time pushed back to Saturday as we won't be finished until it's too late to start back in Bristol as not sure how long it'll take to get back from Surrey.

Finally for the notes of support overnight and today, thank you sincerely; guess I lost sight of the caring love and support of those who know me, and know that we are only doing what any parent would try to do for their child in the same situation!

Thanks again.