Today's Entry

I don’t know how I would describe the day. It has been a day of variety. Slowly we are beginning to grasp what is happening for us.

I didn’t stay at the hospital last night. I have been given my marching orders. So from now on I will head home at night and go back in the morning. I will try to remember that there is peak hour traffic next time. It took a while to get in today. As I drove in, I couldn’t help wondering what might have been happening for those people in the cars around me. For all I knew, some of them were making the same journey I was.

Oliver had another large and overly disgusting poo last night so I was thankful I wasn’t there. It was so bad that his little suit was thrown out. More trouble bleeding his line resulted in us getting a chest x-ray, and his bowel motions coupled with his obvious discomfort had him in for an ultrasound too. This was quite the marathon experience, with him being scanned by 4 different people so that they could get a consensus on what they were seeing. It wasn’t anything terribly bad. His mucusitis has inflamed his bowel, and some of it has folded over on itself. Just another thing to keep an eye on. Oliver’s bloodwork hasn’t been great of late. He has a bacterial infection, though no fever at the moment, and has zero neutrophils. He is getting potassium and magnesium infusions because, as we learnt today, the chemo can cause the kidneys to leak these minerals, and so Oliver hasn’t got enough in his blood. He has also developed some lesions on his skin that are somewhat baffling for the medical staff. His mouth has started to bleed from the mucusitis, his heart rate is racing along, and in order to keep him comfortable, he is back on a morphine injection. Despite all this going on for our little boy, he still managed to lift our spirits with giggles during peek-a-boo with mum, and dad was able to play with him a little bit during the day.

If all goes well tomorrow, we should be able to have his PET scan done at Charlie’s in the morning, and then hopefully have his skin looked at by the dermatologists back at PMH. All of his scans hinge on how well he is, as he needs to be either sedated or put under a general anaesthetic for them.

We learnt an interesting statistic today. Although it is a statistic from British Columbia in Canada, I can’t imagine it’s a big stretch to apply it here. Of children under 15, only 1.2 in a million get ALCL. So our little man is 1.2 in a million. Our consultant, Dr Angela Alessandri told us that. How does she know? She actually wrote the book, or at least the article – A Population-Based Study of Pediatric Anaplastic Large Cell Lymphoma . If you want to read it try http://www3.interscience.wiley.com/cgi-bin/fulltext/91016206/PDFSTART. Going through this, you want to know you have some good people on your side. I think we have been lucky enough to have found the best.

What you don’t want are people who make it harder. We have also found a few of those in hospital. I’m sure that it is just personality clashes, but I think we will be coming to the point of requesting that certain staff don’t deal with us. It’s tough enough without having to clash with staff.