Editor's Note: This blog post originally ran on April 24.
I don’t usually put titles on my posts. The reason for this is twofold. First, titling requires a level of cleverity that I do not possess in sufficient amount. B, I never know what I am going to write about until it comes out. And since I don’t go back and re-read, it does not make sense to put in a title. And 3, I like to see what Martin at San Bruno Patch (shameless pitch…check out Patch.com) comes up with (it makes me feel like a real author).
Today however, I am making an exception. I was thinking about calling today’s post Ruin v Peservation but I think that only a couple of people (Matt, Patrick, maybe Jason) would understand what I am talking about, so I went with the safe route and decided to call this post, “False Spring.”
In the past I have discussed how hard it is to write this blog in the absence, or significant lessening, of emotional difficulties. That is why I moved the purpose of this blog to the family as a whole, and especially the wonderful experiences that we are having with three crazy boys. Well, I have recently been reminded exactly why I started this blog.
Cole had his series of scans and the main area in his abdomen has not changed in size, which is a good thing. This means that, while it is not shrinking, it is not growing. That was the news that we were hoping for. Don’t start dancing yet, though. The MIBG scan showed an area in his leg with active disease. OK, so that sucks. But wait, there was a chance that it was not actually active disease in his leg, but instead, it was pee on his leg. Stay with me. This is not one of those random things that I write that may or may not be an inside joke to someone.
So they did a further scan, MRI this time. The MRI confirmed that in fact Cole does not, or at least that time did not, pee on his leg. He has a new spot of active disease. I thought we were done. I had already planned on the tubes coming out, and having the summer to end all summers. Alas, it is not to be. We are jumping right back into therapy, starting next Monday.
We start with an infusion therapy at the clinic for 5 days, starting on Monday. Fortunately the therapy will be done outpatient at the clinic, and Cole will likely not miss any school. After that, and sometime in June Cole will return to UCSF for a one week MIBG therapy. This therapy is much more intense and when I know more about it, I just might tell you. We meet with the UCSF people next week. I can tell you that there is a mirror involved.
I thought we were done. I thought we were done. I thought we were done. I thought we were done. All work and no play makes Jack a dully boy. I thought we were done. I thought we were done. I did not cut and paste. I promise. I thought we were done.
What if we lose?
Let me tell you what keeps me sane. Watching a network TV show that is a musical about the making of a musical which suddenly breaks into a Bollywood number. And I have had only one glass of Scotch.
Oh well, I would say sorry for the rambling and strange post tonight, but I am not really sorry cuz that is how my brain is going right now.
Please pray, think of, meditate about, or whatever for Cole. In the meantime please raise your glasses and toast Cole, optical engineer.
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