Two and a half years down, one more to go! Yesterday marked the one year countdown to what we hope will be Johnny's last year of treatment! Thank you so much for hanging in there with us I know it seems like it's been FOREVER since we started this crazy journey. Every once in awhile I have to go back through photos to find something and I see events that happened before, during and after Johnny's diagnosis, sometimes things feel like yesterday and some, a LIFETIME ago.
Now and then Mike and I question our motives for some of the things we pursue or say yes to "for Johnny". Right before our CA vacation this summer, our friend Paul G. from Fuel TV called to say he set up some pretty cool stuff for Johnny. Of course Mike and I were stoked for Johnny (and let's face it, we were super stoked too since we've become such big Fuel fans over the past few years), which made us question our intentions -- were we really doing this for Johnny or were we getting caught up in the whole 'hollywood' aspect of it? It's been cool that we have been able to meet surfing and skating pros, and we have made special/meaningful friendships with really cool, caring and thoughtful people. But there is also the excitement of actually meeting, who we think are 'famous' people. I mean, we didn't want to be stage parents and push The Johnny into something he didn't want to do, and have him turn into some sort of teenage train wreck years from now (i.e. Lindsay Lohan/Brittany Spears).
Then days before we left for vacation, Mike's VP lost his son to leukemia (he'd been battling it for a few years). We were devastated by the news and it helped us keep our head in the right place, with the thought, 'you never know when it could all change' (Mike's VP's son, Jonathan's leukemia came back out of nowhere), and/or 'it's a great diversion for Johnny'.
I'm sure you guys feel the same way when I say "oh, yeah, Johnny has leukemia..." because when we have really good spans of time, like this summer, I forget that, yes, he really is sick. Our life becomes routine. In such a way that you think, 'everyone is good with it ('it' meaning cancer), even Johnny'. Mike and I often wonder what he's thinking. Johnny's so hard to read and won't tell you if he's scared, sad, hurt or sick, we assume that he is thinking the same thing we are -- whatever that may be.
After the past few days, Mike and I decided that Johnny doesn't really spend too much time thinking about having cancer and all of the 'diversions' (i.e., Deluxe, Adio, Fuel TV, meeting Pros) really are just that for him -- deversions -- time not thinking about treatments or cancer or what the future holds for him.
Our friend at Texas Children's PR department, Ryan, called a few weeks ago and asked if Johnny would like to participate in a 'inspirational video' for a company that markets them to elementary and middle schools -- to teach kids about the 5 aspects of character -- Johnny's part would be 'courage'. I said yes, later told Johnny, and he didn't seem too bothered by it. The shoot would also coincide with his "big treatment" he had yesterday, so they could show what he has to go through physically and the courage it takes to get through it mentally. A few days before the shoot (tues. or weds. of this week) they forwarded us the questions they were going to ask Johnny. Mike and I decided to go over them with him so he could answer the questions with more than a shrug or a 'yes' or 'no' answer.
The question were a small window into what the little guy is really thinking. First of all he doesn't like to know about spinals/'the works' to far in advance (I think he starts to really think about it) and we kind of sprung it on him early; I also think he looks at each treatment as one more he can put behind him, he's that much closer to the end of treatment or possibly an inconvenient doctor's visit. He puts his 'game face' on the night before, has it on up until he wakes up from treatment, and I swear the MINUTE -- no, quite literally the SECOND the needle is out of his spine, he has a BIG SMILE on his face. It's over. Now he can be "Johnny-the-Rockstar-Skater-Surfer" again. And we were messing all of that up by asking him what it's like to go though that f@#king mess. Not just light questions, but really making him think about treatment and cancer and what it's like to be nine years old and have such a heavy burden on your mind. Yikes. I screwed up. And he let me know.
During the actual interview, even after the heavy treatment yesterday, when John (the producer of the video, who was so awesome with Johnny) (I know, there are a lot of John/Johnny's/Jonathan's in this story) kept drilling down, trying to find out what it takes, Johnny's courage -- where he finds the courage to keep doing it time and time again, I could tell it was really starting to affect Johnny's psyches. At first Johnny would turn the cancer/courage-question/answer into a skating story, then when John would ask specifically something related to cancer/treatment and how Johnny gets through or mentally prepares himself, it stumped the little guy. He just didn't want to think, much less talk about the fact that he has cancer and all the shit he goes through to keep himself alive. It was really hard for me to watch. Even harder for Johnny to verbalize what he's been possibly thinking the past two years.
Twice on the way home he told me "next time someone asks you if I want to do something like this, ASK ME."
"Okay, I screwed up. I'm sorry. I promise I'll ask next time. (trying to redeem myself): But they said they were going to pay you FIVE HUNDRED DOLLARS. That was worth 500 bucks right? It wasn't that bad was it?'
He didn't even look at me, and just shrugged his shoulders.
He's in a much better place this morning. I hope he doesn't internalize yesterday too much. There is no way he will discuss it with us, not even Joey. Mike and I figure that once he's finished with treatment he will be okay talking about all of this. Until then, I think he looks at treatment like I look at trying to finish each run on Saturday mornings; 'let me just get to that mailbox and I will be okay', except with Johnny he probably says 'after tomorrow, things will be back to normal, I just have to get past tomorrow and I will be okay.'
At least that's what Mike and I keep telling ourselves...
Whew!!! that was long, but important for me to get off my chest!
Thanks for staying with us this long! We appreciate all of your support and love -- we're almost done!!!
DON'T FORGET TO EMAIL OR BLOG A SONG TO ME FOR MY RUNS ON SATURDAY!!!