- What Now?
The cry broke the church’s uncomfortable silence. It actually was more of a moan than a cry. It was deeper, coming from her core. I’d heard it only once before and knew it as a sound caused by a loss that will never be recovered. No one in the church had to turn to discover its source. We all knew the mother had entered to say goodbye to her 19–month–old son.
We watched as the now composed mother, along side her husband, followed the small casket—a family rendered incomplete. As they passed our pew, my wife clutched my arm and we wept tears of sympathy, guilt and fear.
Just 15 months earlier our now, 2–and ½–year–old son, Jun, had been diagnosed with a brain tumor not dissimilar from the child in the casket. The tumor has a different name, but it’s equally complicated, and comparably rare and aggressive.
Over nine months, Jun endured two craniotomies, three rounds of induction chemo, three rounds of high dose chemo with stem cell rescue, 28 days of proton radiation, a sub–dural shunt placement, a port placed and removed, a broviac placed and removed and many, many blood and [End Page 16] platelet transfusions. As of his last scan, there was no evidence of tumor.
Jun has now been out of treatment for six months. His hair has grown back. He’s stronger. The meals have stopped arriving. And we no longer are the recipients of sad eyes at playgrounds and restaurants.
In many ways we have returned to a somewhat normal life. If you didn’t know Jun was in remission for a brain tumor, you wouldn’t know. Despite all this, cancer still strangles us with fear.
Brain tumors often come back. Too often. We’ve heard a few different numbers on the likelihood. And while we’ve never paid too much attention to statistics, they are too scary to ignore. Especially knowing that should it recur, there is no cure. This is our day–to–day reality.
A lot of our time is spent analyzing, over analyzing and obsessing. We watch him closely. Every time he stumbles, coughs, or sleeps fifteen minutes longer than normal, we wonder if it’s something more. I’ve called our oncologist about a 99–degree temperature. Something I wouldn’t have done during treatment (I usually waited to 100). I’ve questioned whether hiccups are a sign of recurrence. Admittedly, I’ve even Googled that last one just to be sure.
All the anxiety builds the closer you get to an MRI date. My son has scans every three months so I’m beginning to recognize the cycle. It starts a couple weeks out. Normally it begins as a twinge the moment the date is set. But each day it grows, occupying more and more of my mind. This is not to say, I don’t think about it everyday. I do. But the thoughts become more paranoid and frequent. Worst–case scenarios play out. It’s different from the time during treatment. We always had the comfort of knowing that there is still more treatment.
By the time we reach MRI day, bring Jun back to the machine room, watch the anesthesiologist put him under, and leave him to be scanned for the next two and half hours, I feel close to nauseas. In my mind, at this point, someone knows. I know they may be a technician and are not necessarily trained to read an MRI. But they know. They’ve seen it before.
There usually is a waiting period between the time of the scan and the time you can meet with your oncologist or someone else qualified to read and interpret the scan. I do whatever I can to make that window as narrow as possible. I leave radiology with a disc in hand and head directly to the clinic to pass it off. I’ve heard of people waiting days for an appointment. That’s not an option for me. There would be no eating, no sleeping, and no resting heart rate without knowing. Fortunately, our oncologist is...