If you have been with us since the beginning, you may remember that we were initially told that they were able to remove the whole tumor. And later we discovered that there was a miscommunication between Michael's doctors and that there was a small portion left behind. Then we were given the diagnosis of Ganglioglioma (which is typically a relatively non-aggressive type of tumor) only to be told later that it was actually an Astrocytoma (which can sometimes turn aggressive). The good news here is that at least it is still classified as a Grade II and therefore considered benign.
You may also recall that initially we were told that Michael would not need anymore treatments, except for possibly another surgery "someday" to remove the remaining tumor. Three months later, we learned that the tumor was growing and Michael would have to begin intensive chemotherapy. And the decisions (even the little ones) that we have had to make since last summer have changed us forever.
We had to decide whether to go with a chemo treatment that has a slightly better success rate but can cause secondary cancers or to go with the good but slightly less successful treatment with fewer side effects (we chose the latter). We also had to decide whether to surgically "implant " a foreign object in Michael's carotid artery to receive those treatments or to choose a less invasive port that was easier to damage (we chose the former). I can say with confidence, that we have made the right choices for Michael so far.
The last low point in our long journey was last spring when we learned that there was actually a larger portion of the tumor remaining than we thought. But, I am happy to say that at this time, we are in a high point emotionally after learning last month that the chemo seems to be working and the tumor appears to be shrinking.
I was recently reading some of my older posts and it feels like they were written by somebody else entirely, a woman that is a stranger to me now. The new terminology that I was using so uncomfortably is now a second language to me. Things that were foreign to me a year ago, now seem like they have always been a part of my life. Last week at chemo, the nurses couldn't respond right away to the alarm on Michael's IV pump that signals a medication is done and told me I could turn it off -and I actually could.
We have had a lot of amazing people enter our lives - doctors, nurses, volunteers from CompassionNet and Make-A-Wish and many, many strangers that just wanted to bring a smile to our little boy's face. We have been fortunate enough to see the generous, caring, unselfish side of people - family, friends and strangers alike. It seems whenever we have needed something - whether it was emotionally, physically or financially - there has been someone right there, ready and eager to help. And we thank each and every one of you from the bottom of our hearts.
As we go forward down this path that fate has led us to, I have been asking myself "If I could look into a crystal ball and see what the future holds for us, would I want to know?" The answer may surprise you - but no, I wouldn't. If I knew that the future would hold only good things for us, I would look in a second. But, with the chance (however slim) that there may be heartache or disappointment at some point in the future, I think I will just take each day as they come and enjoy them to the absolute fullest. And so, that is where we are at this point of our lives. Living each day as they come and not worrying about tomorrow until tomorrow.
I hope you will continue along with us and - as always - please keep Michael in your thoughts and prayers, JoAnne.