The more I learn about brain stem glioma the more I realize that my daughter has a creative cancer. This insidious disease is very clever. It adapts to treatments such as radiation and steroids. It will intermittently grow and then slow down so that MRIs can misleadingly make you think that it has become temporarily dormant. Specific areas of the tumor can grow faster than others. It gives you a remission, like the one Bea has now, that makes you believe that everything is going to be OK.
Even today, after finding that Bea has been accepted into a promising clinical trial, I can't believe the minutes of my day. It's hard to believe that Bea is really home and functioning like a normal little girl. I can't wrap my head around her robust energy, her creative thinking, her immense vocabulary, her kind consideration of other people. I don't get it. She has cancer but she's healthy. It's a terrible paradox. It's terrible because it is still so very likely that it won't be a paradox for long. It will be a complimentary truth. So, will the truth be that her cancer is gone and she's healthy or will the truth be that her cancer has come back and she's not?
This is a terrible burden to carry and one that I do not have to carry alone. I have a wonderful family and friends and community (global, not just local) who has provided support in all kinds of ways. You have all provided us with the support and distractions to make our days pretty happy overall. That's an amazing thing that I am ever so grateful for.
And, I'm also grateful that I am creative, too. I can be as creative as that damned cancer. I can outsmart it so that Bea never feels any of it. She won't know what it is, what it can do and why it's such a terrifying thing to have in her body. She will never, ever fear her cancer if I have anything to say about it. We will draw, write, walk, run, travel, sing, eat, play, invent, act and live our lives as best as we can until the cancer has nothing left to say. It won't be interesting anymore. Just blah, blah, blah, cancer.
So, her cancer can shut the f*ck up. It's not nearly as clever as it thinks it is and nobody likes it.