Friday, September 20, 2013

Random thoughts (Week # 27)

 
Its been how many days since by last post? 17 days! That is clear sign that things have been going well at the Williams household! Aside from this most recent viral illness, and it's been a pretty terrible one, we have had smooth sailing over the last couple of weeks. We had a very successful pancake fundraiser at KU and I am very grateful to work with so many wonderful people!
 
I am anticipating Brayden will make counts next week and take his chemo as scheduled. We are officially halfway through Brayden's year long chemo regimen and that's exciting but also scary. If Brayden continues doing as well as he is doing now, meaning the tumor remains stable through the protocol, then he will take his last chemo dose in February. He will then be monitored closely and when the tumor begins to grow he will be placed on chemo again. There is so much uncertainty about how quickly the tumor will begin to grow.....
 
When I started writing these blogs, I intended to do it to keep people informed about Brayden because (as many of you remember) 6 months ago when people asked me how he was doing all I could do was cry. I am grateful to say that is not the case anymore. That being said, the  purpose of this blog has evolved along the way and now I find that writing blogs is therapeutic for me, and it is also a great way to archive our memories/emotions. I have a scrapbook of photos that I am keeping up with, but when I look back at different pages in the scrapbook I mostly think about sunshine and rainbows. He is smiling in the majority of those photos, so at times I have a hard time remembering the raw emotion that I was feeling when the photos were taken. I know many people wonder why I would want to remember anything but the happy things, but the truth is that being able to remember how much Brayden has been through is important too. That is unfortunately what half of this experience is about. When the day comes that we are forced to start making difficult decisions I want to be able to go back and look at everything he has been through. I want to be able to go back and look at how hard we (mostly he) has fought. It is important for me to keep it all in perspective.
 
 Where are all of these thoughts coming from? To be honest I don't really know, I am guessing it has to do with Brayden's upcoming MRI, which will take place 4 weeks from today. Upcoming MRI's elicit a wide spectrum of emotions, with the most prevalent emotion being cold blooded fear. I know that at some point during this journey Brayden will have an MRI and we will be told there has been progression. As each upcoming scan approaches I am scared to death that it will be the one to show progression, although there is really no reason for me to think that way because he is doing new things everyday and he seems mostly unaffected by the tumor or chemo.
 
Bret and I have both been working extra hours and I am grateful that we are able to do that right now, although leaving Brayden for 3 shifts in row each week is tough. I started working weekend option as well so I can be at all of Brayden's appointments, and it pays a little more also. Unfortunately we have not had any luck with selling our house yet, but I am hopeful that it will happen sooner rather than later. On a different note I got Brayden's Halloween costume and he is going to be a puppy this year. Least year he was a giraffe and I carried him from house to house to see the neighbors, but he wasn't really able to engage at all. He could barely sit up last Halloween so it will certainly be different this year. All in all things are pretty good right now!
 
 
 

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