Outpatients (or is that out of patience)

We were back in the hospital again today for our first check-up and first out-patient experience. We expected to be home by lunchtime, but that changed. I think we need to get used to our plans changing at the last minute fairly regularly, at least for the next year.

Oliver’s blood counts were OK, though they are dropping again. His mouth is starting to get sore and the mucusitis is beginning to rear its ugly head. I suspect that when we go back in on Monday we may be staying for a few nights. Next week we have a bone scan and more chemo on Monday, a PET scan on Wednesday, and a CT scan on Thursday. For some of these he will have to be under a general anaesthetic so that he doesn’t move. If his mucusitis is bad enough to warrant morphine again then Karli and Oliver will be staying at the hospital for a few nights. I won’t be staying this time around – I shouldn’t really have stayed last time. But I’ll probably leave fairly late and get back fairly early. Maybe it’s time to start seeing how well the van works for camping in. We need to work out how to operate without me at the hospital as I will need to go back to work soon anyway. It’s just going to be tough. When you can’t do much, you hold on to what you can do, even if it’s pretty much useless.

Oliver was low in magnesium again today so he needed a transfusion – thus the reason for needing to stay in a bit longer. He needed a transfusion on Monday to, so I’m not sure what is happening there. Another question for our doctor. The problem with decisions about giving medications, blood, minerals, etc is that they then need to be made up in the pharmacy before being sent to the ward, where they wait until someone has time to hook it up to its recipient. Then once you’ve had your little dose, you have to wait another 15-30 minutes while they flush the line and make sure you got everything you were supposed to. Sickness is time consuming.

I still can’t believe this is happening and that we have a little boy who is fighting cancer. He’s pretty amazing. All the kids in the ward are, and so are their parents. There are no good stories really, just some that are worse than others. The sadder ones are the mum’s who are single parents and raising a few kids. I can’t imagine having to go through this by yourself, let alone ensuring you focus some energy on your other children. Add to that the added aggravation of providing an income and running a household and it’s a whole lot of stress.

We discovered today that we may have been missing some of Oliver’s pain cues and misinterpreting them for hunger. It’s not a nice thought that you may have inadvertently been allowing your child to suffer and that the only way they were able to comfort themselves was with a cuddle or a feed. Hopefully we are a bit wiser now and can keep him comfortable as he rides the rollercoaster of side effects. The problem then is overmedicating him.

The great news is he is of his steroids for a couple of weeks, so we should see some changes in his demeanour hopefully. I must admit that every day he does something different that shows he is getting better, even if it’s just being able to roll himself a bit more, or sit and play a bit longer, or reach out and grab something. This could prove to be an issue as the chemo can affect his ability to control his hand movements, but I’m pretty sure that if he gets a little behind in his motor development that it won’t take him long to catch up.

I tried to have tummy-time with him the other day and all he did was lay his face on the mat and cry. The next day I thought I’d see how he would go if I laid him on his tummy for bed. Not only did he not lay his face down and cry, he held himself up high off the bed and cried for ages. So he’s obviously got the strength and energy to do it. Now all we have to do is persevere and be creative with his playtimes.

Thanks again for joining us in this journey. We dearly love the support that we are receiving from people who are reading our blog. I hope to be able to get something that is a little more educational for you, so if you know of any blog sites that are a little more like creating your own webpage, let me know. I should probably do some research. I suspect that I can probably create my own page with a straight forward application and upload it on to my ISP server as part of the deal I have with them. I’ll put it on the list of things to do. I might just get to it.