When our son was diagnosed with brain cancer almost 2 years ago now, the world stopped spinning. I think the rotations have slowly started again... though I can say confidently that what we unluckily lucky to be cancer survivors (I count parents of pediatric cancer as a member of that club) call "Scanxiety" is definately rolling strong for me... with Will's next scan is only a week away.
The uncertainty of being in this club is amazing, bewildering, exhausting and exhilerating. Most parents only see their child learn to sit, roll over, or walk 1 time. We got to watch those things happen twice. Next thursday, will we be diving into new chemo schedules, surgical options and massive life changes or will we be happy feeling like our gift (what doc's call No Evidence of Disease) has been extended? I sure hope for the latter!
Initially, you have been so scared, that anything can make you retreat into yourself - or into your family - hoping you all can make it. It's odd, but survivorhood, at least for the parent of a cancer survivor is just as hard as treatment.
I think that's becuase cancer is indifferent, and pretty damn unpredictable.
So you never know. Things seem great, then wham it's back. So even though you show no evidence of disease... that does not mean 3 years from now it will be the case. It's an incredible balance between knowing you should "live in the moment" and "make the most of each day" while full well knowing the rug could come out any time.
At the same time, I'm grateful for the dramatically improved BS detector Will's cancer treatment has given me, and for the far greater sense of how valuable life is. Sounds corny. Sounds lame and cliche to say that. But it's true. And it's not true in a motivational speaker kind of way, it's true in a very, very real way. I remember a father who's son had gone through medulloblastoma treatment about 10 years prior to our son Will. His son is going strong and doing great now, dealing with challenges his treatment left behind like a real champ. He described to me that things everyone else views as nice, you realize are amazing. It's so true. Watching my son walk, talk (as well as a 2.5 year old can), become excited or sad, hug his sister, eat snow... whatever it is, it's absolutely amazing and something that I wont let go of - no matter what next wednesday, or the scan 3 months from now or 3 months after that has to say.
The kid's amazing. He's inspiring - becuase he has no clue in the world that he's done anything special. He's just a kid. He's just figuring things out.
So in that sense, he's just like the rest of us, only luckier!