September 11th… a day that means so much to so many, and now has an even more significant meaning to us. One year ago, September 11th 2018, we sat in the local Pediatric Oncologists Office and heard Caleb’s official diagnosis. Many cancer families refer to this date as “D-Day” (Diagnosis Day).
I remember driving to the hospital with knots in my stomach. They were going to tell us it was just some benign tumor that he had since birth or something right?! There is no way my child has cancer, let alone brain cancer. No, there’s no way. Ok, but if he does they are going to tell us that their success rates for treatment are great and make us feel ok, right!? Those are all the thoughts that were racing through my head as we drove to St. Pete.
But none of those things would happen. We DID get told that our child had brain cancer, and not only brain cancer, a very aggressive type of cancer called Atypical Teratoid Rhabdoid Tumor. I remember my head spinning as the words came out of her mouth, like what did she just say?! She explained that the words describing the name of the tumor refer to the shape of the cells, and it was called AT/RT for short. I remember her saying it was a high grade tumor, which is the worst kind. None of this made sense to me, but I tried to process it all. Once again I felt like I was out of my body watching a scene play out in a movie, just like when the ER doc told us they found a tumor in the first place. But the one thing that I was waiting for never came… her telling us that their treatment was good and survival rates were high. As she talked I waited for some comfort and got none. James finally asked what I couldn’t, “what are the chances of survival?” She stumbled over the words 10-30% as she told us she had 12 previous AT/RT patients and only 2 had survived. I remember thinking no way! Not Caleb! I can’t lose him!
Our friends and family were waiting for the news but we couldn’t text something that horrible, so we asked everyone to gather at our house ASAP so we could explain it all to everyone at the same time. To be honest I don’t remember a whole lot of that conversation. It’s all a blur. That was around dinner time one year ago…
Well our little miracle is still here one year later. Tonight at dinner time we ate his favorite (Chick-fil-a) and went swimming in our pool. I watched him run, and swim, and giggle, and dance. I’m so grateful for every moment. The last year has not been easy but if it lead us here, to being together, and really valuing every moment we spend together as a family, then I wouldn’t change a thing.
We also wanted to do something special in remembrance of his one year anniversary of diagnosis. We decided to plant a tree, something to symbolize life, and something we can watch grow just like Caleb. Over the past week the boys helped dig the hole, plant the flowers, and lay some special stones down. They had a blast helping with the project, and although they don’t completely understand the significance of it, I hope they will some day.
To end on something a little more upbeat here are videos exactly 1 year apart… the first is the boys playing on September 11, 2018 and the other 2 videos are tonight in the pool. To my superhero… I can’t wait to see what you are doing next year as you continue to grow. And although it hurts to look back it feels so good to see how far we’ve come!