Life's Downs and Ups

On behalf of my little boy, life sucks. It's not enough to have cancer and require chemotherapy, but the therapy itself has side effects that I wouldn't wish on my worst enemies. I can't imagine what it must feel like for my little boy when it hurts too much to be able to breastfeed. When the one place where you feel most secure and safe becomes a place of pain. When you drool all over everything because you don't want to have to swallow. When you have to have a shot of morphine so that your mum and dad can do your mouth care routine to try to improve things. When you continually swap from finger to finger, looking quizzically at your hand, wondering why it hurts so much to suck your finger.

Oliver's mucusitis is so bad at the moment that he is on morphine and ketamine. His morphine has steadily gone up to the point where the pain team thought it wise to give him something else. His temperature has also been high so he is also on a couple of antibiotics. At the moment he is neutropenic, meaning he has no neutrophils (types of white blood cells) to fight off nasties. They will come back, but this neutropenic phase will be part of his life as he goes through his chemo. This will place severe restrictions on some of our activities at times.

We had a rough night last night. I got about an hours sleep. The pain and discomfort seemed to be steadily increasing with nothing really seeming to work. Eventually we resorted to his pram and he settled beautifully. Not sure why. Maybe because he was fairly snug in there and laying on his side. We've got him on his side to sleep now aswell so that all the saliva can drain from his mouth and not pool in the back of his throat giving us all a scare when he chokes on it. He did decide to mount a protest whilst in his pram though. I peered through to check on him, only to find that he had decided to pull his nasogastric tube back up out of his nose. It was a fairly short lived victory though because a new one was soon inserted, much to everyone's dismay.

We had a couple of vomits through the morning, with his morphine being steadily increased. This seemed to have an effect with him calming down over the day, though Dad wasn't around for much of it as he was catching up on some sleep, and also went to get some paperwork from work.

Life sucks. Yet life also lifts you into the clouds. Maybe it's more that situations can suck, but people can remind you of all that is great in life. I am taking time off from work. Whilst it was an easy decision to make it does create some difficulties as I am self employed. On going in to the gym I was presented with an extremely generous gift from the clients and staff at RPT. So to the members and staff at RPT I can only say one word - Thankyou. Words fail me. The generosity of the gift, and the concern for my family that it conveys, are staggering.

And so I sit and write with one hand, while the other gently pats my little boy on the back. He is virtually lying in the coma position so that saliva and mucus can drain from his mouth. While Oliver, Karli and I go through this crap experience that leaves us sobbing in each others arms when we aren't numb from it all, we know we are surrounded be a great and varied group of people who show their love and care for us in whatever way they can. The silver-lining is wonderful, but I would prefer for the cloud to not be so black.