I haven't posted anything for the last couple weeks, but I assure you it's not due to the lack of thought. Quite the opposite in fact. I find my mind at endless labor theorizing, philosophizing, positioning and generally grasping at straws. I stared at a blinking cursor a few times, only a little too willing to find my rescue in the form of distraction... any will surely do.
When I started this thread back in 2010 it was intended to be purely informational. I faced a sea of people who cared enough to want to know what was going on with my son. I wanted to be able to communicate that information once, and do so effectively. I didn't like talking on the phone, I hated Facebook, Twitter (micro blogging) seemed like a good idea but there is no way I would involve myself in anything with such a ridiculous lexicon. This left me with the option of a website
William Faulkner said "I never know what I think about something until I read what I've written on it.", and that sort of became the case for me as well. When things were at their worst, it seemed that this medium somehow aided me in organizing my thoughts and perspectives on a situation. An odd and equally unexpected development for sure, but I just went with it.
Now here we are in 2014. To be honest I was looking forward to hitting the delete button on this thing right after Robert's "cancer free" party this summer. I had even made a few mental notes about a final post. But now we are starting over. I want to continue to keep those who care enough to check on us informed on the goings on. That being said, three and a half years later I still don't like to talk on the phone. I still hate Facebook, (really people get off of it, it's the bane of our civilization), and you're still not going to catch me asking someone to twittley tweet me. Therefore, the Blog lives on...
Starting over ....but not entirely. In 2010 on top of the emotional issues, we found ourselves facing what seemed to be an abyss of the the unknown. As difficult as we find our current situation, we have gone this way before. We know the procedures, routines, most of the treatments and what to expect. My wife and her network of friends are miracle workers when it comes to logistics. I cant say enough about the kindness of these fine people, thank you. Additionally Kasie has become a Super Ninja Cancer Mom, who literally made her own diagnosis on an issue this week (by smell...I'm not kidding) and demanded that a test be run, the results of which proved her correct. So starting again, yes. Starting over, not quite. Not with some of these arrows in our quiver.
Robert is a few weeks into the new program. He is on much higher doses of Chemo therapy, and spends a lot of time at CHOA. The Cancer cells are still present in his spine, and the new chemo should have eradicated them by now. However they are greatly reduced, which shows the new therapy is having effect. Hopefully the spinal tap taken yesterday will show clear when the results come in next week, allowing him to progress on the the next step in his treatment. They have to remove all the cancer cells that they have located before he moves on to the next phase. One of the biggest challenges has been the extremely high dose of steroids. He's always been a handful on them previously, and now his dose is at least triple what it has been. He has swollen up like a tick and has mood swings that can be difficult to deal with at times. He's also having a hard time with some pain in his bones and joints, but we are able to keep it managed. Its hard to see him like this, but take comfort in knowing that he is generally happy and still having fun.
You can't keep my boy down.