Day minus 4

It’s now pushing 10:00pm as I write this and I have had about 4 hours sleep since 4:30am yesterday. Every so often I hear the faint murmur of ‘daddy’ from Levi’s bed. I have done some tough things in my life like sailing the bass strait twice on a tall ship, hiking 75km through Patagonia with a bad case of gout and jumping from a perfectly functional aircraft but I have to say that I would take any one of those right now. It is only day 6 into a minimum 110 day process and Levi is loaded full of chemo and far to young to tell me why he keeps murmuring my name. It is obvious he is in some level of discomfort but he doesn’t know how to tel us where it hurts. Frustration is the first word that comes to mind, but it doesn’t cut it, if I had a thesaurus I would probably still struggle to find the words that describe my emotions let alone Levi’s. I fear that it will only get harder as he receives his next lot of chemo in a couple of hours and then another lot at 6 tomorrow morning.
Overall it was not a bad day today, no sleep made it difficult to function but at least we were able to make a break for it and managed to get some much needed vegetables into our system. One thing that as parent, you nearly always neglect yourselves as you put your kids first. In short, what good are we if we can’t look after them, because we lack the core nutrition to sustain us during the day let alone sleep. Speaking of sleep, Levi managed to get a decent amount during the day which sort of made up for his lack overnight as he received a bit of an unpleasant surprise overnight during a change. Chemo is one of those drugs that you don’t really want unless you have to have it, and even then you really have to evaluate the benefits vs risks of taking it. Well I didn’t really think that it would turn a toddlers bum red raw so when I went to change him just after midnight it was almost as if the wet wipe that I was using was coated in acid as he shot out of bed screaming and it was almost like he crawled up the wall in pain. This didn’t help me as I was half asleep and had no idea what I had done so after a quick page to the nurse it was apparently a normal reaction to the chemo and future nappy changes would require a thick coat of zinc to sooth the “discomfort”. The highlight for Levi today was that we finished decorating his room with photos of his two dogs, Ant and Belle. It was amazing to see his face brighten as the photos went up to the point of wanting to have dinner with them followed by a couple of episodes of Thomas and friends.

The side effects of the chemo are becoming more and more apparent as we watch his food intake decrease daily and his energy levels becoming more sporadic. Maintaining a positive perspective from our point of view is also difficult on no sleep and crap food but two thing keep shining through these murky waters and that is that we have amazing friends and the knowledge that Levi will get through this.