Every three months, Nick has a brain and spine MRI. The scan itself isn't too tough to go through. He puts on special goggles that allow him to watch a video, has a warm blanket pulled up to his chin, then slides peacefully into the tube. After an hour or so of listening to the "bang, bang, bang" of the MRI machine, we thank the staff and go to Target to get him a toy.
It's the waiting. That's the hard part. For the better part of three months, we enjoy Nick's good health, and his almost perfectly normal mental and physical capabilities. The fact that he outwardly appears so perfect makes it easier to pretend he doesn't have brain cancer...Makes it easier to push back the tears and the fear...But when it's time for that MRI, it all floods back to us. If those scans come back showing evidence of disease, we know the worst is coming. We know relapsed medulloblastoma is terminal. We know the hospital stays, clinic visits, pale skin, and bald head become our reality again...Only this time it would be to buy time, not with the hope for cure we had the first time he battled his disease.
It's hard to breath...hard to speak...hard to answer the people who ask every day if we've gotten the MRI results back...For days, sometimes a week, we wait, pretending to be like everyone else. Just going to work, running errands, getting gas or groceries...The truth is, I can hardly think or feel anything other than anxiety during those days. I check my phone every minute or so to make sure I haven't missed a call, but when the call finally comes, I don't want to pick it up.
As soon as I hear the cheerful voice of Nick's case manager, Gail, I know his scans are clean. I know that she either wouldn't be the one calling, or at least wouldn't be sounding so upbeat, if the news wasn't good. The way she says "So Nick's scans were stable..." in such an unremarkable way...The way that statement rolls so smoothly into "We need to make his next appointment..." always surprises me a little. I kind of think there should be a big, dramatic pause after hearing that his scans are clean...Balloons and confetti should fall from the sky in celebration of the good news, but she just moves on to scheduling his next blood draw or port flush...
The truth is, her statement should be "Nick's scans are clean...for now..." As cliché a it sounds, cancer patients and their families don't put too much expectation on the future or even take for granted that there will be a future of any significant length of time. We relish the beauty in the right now, and celebrate the tiniest of accomplishments with intensity. We live, but we live with the knowledge that the victory of a clean scan is a fragile one. There is no finish line. There is no trophy we put on a shelf to get dusty. The cancer will never be a memory. It's more like a shadow or a cloud that hovers close. Every day. Forever.
One year and one day ago, the world lost a precious boy named Connor. Cory and I became friends with Connor and his mother, Linda, during his battle with neuroblastoma. He was effervescent, and his mother was brave. They were both strong, but the cancer was stronger. Celebrating the one year anniversary of his death with a celebration of his life yesterday, was powerful for me. Hours before, I had been in the doctor's office with Nick discussing the fact that he's had clean scans for a year past treatment, so now he can get his port removed. His doctor looked fascinated by his head of hair, bright eyes, and obvious good health. Such a joyful sense of relief followed by such a powerful reminder of the potential for loss we will always face.
Nick's cancer could come back. Or a secondary tumor could grow as a result of the radiation he received. Or he could develop leukemia from his chemo treatments. That's not drama. That's the risks...a few of them anyway...that are his reality. Our reality.
And I could get cancer tomorrow. Or you could get hit by a truck. Nick's scans bring to the forefront of my mind how fragile his life is, how fragile these victories are, but we are all fragile. If we make it through each day safely and with our health intact, we should all be grateful. In some twisted way, I feel grateful for these scans every three months because I have to face our human condition more regularly and in a more tangible way than most people ever do.
When I hear songs that say "Live like you were dying," or slogans like "Live Like Connor" or "Live Like Bella" to encourage people to live as fully and with as much enthusiasm as young cancer patients, I understand. I wish I didn't. If I'm being honest, I wish I didn't really have a firm grasp on the concept of how fragile we all, our children included, are. I can only hope that I, and all of us who have been given this gift of insight and wisdom, are able to be stronger than our fears...That our fears and the sense of urgency they create in us will propel us to love and help and accomplish more than we normally would have.
Tonight, I cannot celebrate a forever victory, but I celebrate Nick's small, fragile, one with joy and gratefulness...And I thank Linda for sharing Connor with us and for continuing to be such an inspiration.
