Doing Well

Karli had the day and night off yesterday and I have sent her home again tonight. She keeps beating herself up about it, but the truth is that she has been here every night and most of every day since Sunday. Mum is the source of all his nutrition and so she needs to be fully rested. Yesterday, Susie and Michelle came up from Perth and spent the day and evening with Karli. She came back this morning rested and looking brighter, though she still needs more good blocks of sleep. Last night, from all accounts, she got to do all the refreshing and enjoyable things she loves. Thanks Susie and Michelle.
Oliver continues to do well. He has a lot more energy and has been really playful the past few days. These videos were taken on Friday. I think we will be in trouble once we get the boy home. He looks like he’s ready to get going.

Oliver’s mucusitis is clearing up, as are the lesions on his skin. His morphine is slowly being reduced and he is off one of his antibiotics. They weren’t able to grow anything in his blood cultures, so it doesn’t look like he has any bacteria doing the rounds of his body. All in all, things are looking up at the moment.
Tomorrow the medical team will meet to discuss Oliver’s scans and other results and issues. We don’t expect any new information. We are going to have to sit tight as to what will happen with his port. I’m not sure what they will do at this stage. I suspect that they may try to needle him on Tuesday or Wednesday to see how it is working before they put him under another GA on Wednesday for a bone marrow biopsy. He may have to have removed an another inserted. This one should go a lot easier though.
His next lot of chemo will begin on Friday with 5 drugs. Two of them will be new to him, and the first 5 days of the cycle includes steroids. So we will have more side effects to watch out for come next week. I’ll also be heading back to work that week, so that will throw an extra challenge in to the mix.
So we are going along OK. We are tired and longing to get back home and have our little boy disconnected from all of his pumps and lines. I never realised how much I enjoyed being outside, and how much better it made me feel, until I had spent such long periods indoors. I hope Oliver enjoys being outside, because he will be sending a fair bit of time outside while he can. It will be his birthday in a couple of months and I’m looking forward to getting him a bike helmet and taking him for a ride in the bike trailer.
I should try to get some sleep while I can. You never know when it all might go pear shaped and sleep will become a distant thought.
Thanks again for your support.