Monster

The last day or so have been interesting to say the least. We have a ravenous, moody beast on our hands, who just happens to also be teething and coming off morphine. Oliver has been on his steroids for 23 days now. He hasn’t really been in a place to complain much up until now, where he is suddenly fending for himself without a batch of drugs in the background. Some of the side effects of the steroids are mood changes, increased appetite, moon face, protruding belly, sleeplessness, nightmares, restlessness and extreme irritability. Oliver seems to be experiencing all of these. There are others but who really knows what's going on for him? He is a hungry monster. We have him on continuous feeds over night to try to get him to sleep and not be continually asking for more food. Combine that with a restless, angry, sleepless little boy who is potentially having baby type nightmares, and he doesn’t really sleep well at night, or during the day, anyway. He seems OK as long as one of us is patting his bottom or stroking his head, but wakes very soon after we stop. I have hopefully tricked him by placing a warm heat pack on his bottom – hopefully he thinks I still have my hand there. He hasn’t woken up yet so fingers crossed.

To give you some idea of what the steroids can do to a childs appetite, her are a few examples. A 5 year old who has just started treatment had 4 eggs and half a kilo of ham for breakfast the other day. One 3 year old is reported to have eaten 12 sausages and a loaf of bread over the course of a night. Another little boy was brought in and had eaten so much that they had to put him on oxygen because he couldn’t fully inflate his lungs. Initially, these stories are a bit funny. But it’s like having a badly behaved child, only it’s not them. They are possessed by the “steroid demon”. And their poor little faces blow up and their tummies stick out like massive beer bellies. Thankfully, Oliver comes off the steroids in 6 days, so within a couple of weeks he should get back to whatever might be normal at the moment. He will have them again, but only for the first 5 days of every 21 day cycle of his 15 cycle treatment.

We aren’t really sure what to expect of our little man when he does show glimpses of normal. He’s been sick for so long that I know the bar will be set pretty low, but he’s almost 9 months old. What should we expect of him? What should we be trying to get him to do? First on the list will be eating solids. He took to them pretty well when we have tried previously, but in hospital each attempt has failed miserably. We were already stressed about raising a child and ensuring we had age-appropriate activities and were giving him ample opportunities to reach the necessary milestones. Now we need to factor in cancer, chemotherapy drugs and their many side effects, the effects of the various support drugs, a little boy who may be tired and listless from just trying to get better. I know he will catch up, that this is very early on in his life and he will soon be mixing it with the other bad boys in pre-school before I know it. But there could be some serious side effects to his nerves, brain, muscles, heart and other organs and we want to pick them up early, not just to overlook them and wait for them to go away with time. Waiting is what kept us out of the hospital in the first place.

As we were waiting for his last (yay) lumbar puncture today, I was reading through his file – which has become considerably large. As I read the notes written down from our last trip to the emergency department, I read that the doctor had written that he had reassured us there was no cancer. Phooey to that. I also noticed that the person who looked at Oliver’s blood and cleared him of cancer at the time was the head of the ward we are now on. I know he was very difficult to diagnose, and that’s all that keeps me from getting angry. I’m just glad we (Karli) kept pushing. Otherwise, PMH weren’t planning on following us up for another 2-3 weeks. I don’t want to think what state our baby would be in if we were still waiting at home, trying to feed him pureed mince.

We’re here now, and our little man will get better, and we will kiss him and cuddle him more than he wants, because it’s all we can do. And when he gets better, look out world.