Friday Evening Update

Even before I arrived at CHO this afternoon, I felt confident that we needed to move forward with the Defibrotide. Not only was his bilirubin elevated even more, but his weight was up more than a kilo, and the relevant enzymes had reached levels that were considered troubling to the team. He's still considered a mild to moderate case right now --if indeed he has VOD at all-- so we're getting a good jump on controlling it and letting his poor little body heal. Of course we're terrified of the bleeding risk, but we felt as if we were fighting the clock, and didn't want to look back with regrets over not starting when we'd been advised that doing so would be best for Logan. So we both signed the consent, and he started the treatment this afternoon. It's administered via his chemo port four times per day for three weeks.

So tonight, I ask you to pray for effective treatment. That the Defibrotide will do its job and help to heal his liver very soon, and that he'll be protected from the side effects, namely serious bleeding. Please, please pray for those things. He needs every single team member praying for him and interceding right now.

I feel tired more than anything, but I also have a sense that I want to crawl out of my own skin. It's a horrible, miserable sensation. This kind of frantic, crazed fear is one of the worst feelings I've ever experienced as a parent, and although plenty of people have hurt me in the past, I'd never wish it on any of them. It's pure misery, agony.

Logan had a nice afternoon with me, all things considered, so I'm grateful for that. He was awake the entire three hours I was present, and although his eyes had what I call the Mophine Glaze, he was aware. He clearly wanted to drink; he'd take sips of water, ice, apple juice and orange juice, and then hold the liquid in his little mouth. But either his throat still hurts too much or he can't make himself swallow on a psychological level, because invariably, he spat out the liquid and almost immediately requested more. He also watched some TV and asked for my cell so he could play Angry Birds. One of the highlights of my day happened after he'd scored a win playing the game, and a tiny, strained smile cracked his oft-emotionless face. It was fleeting, gone almost as soon as it appeared, but it reminded me how much I miss him and how much I want him to be better.

I still believe that this is a spiritual battle at its core, and that this is a substantial hit from the other side. After all, what a 'coincidence' that Blogger was down for two days when he really needed support. Please pray for him, for health, for recovery, for healing. We want to give a testimony, a story of survival, perseverance, faith.

Thank you.

Addendum: Just to add from Adam's evening update call, his WBC rose from .5 this morning at 6 AM to 1.1 at 6 PM, so he's making good progress there. His platelets also held up better than they had previously, coming in at 52. His hemoglobin held at 9 as well. So those are all good things to praise God for. However, as he recovers and his white blood cells begin their work, he's having increasing troubles with his oxygen saturation levels. He's on 6 litres of high flow oxygen, yet he's apparently fallen into the 70s at points this evening (100% is normal for a healthy person) after satting in the low 90s and high 80s when I was with him this afternoon. The PICU docs are hanging around trying to decide if he'll need additional intervention. So please hold that in prayer; pray that his lungs will continue functioning properly and that whatever is causing his saturation issues will resolve soon.