There in the dark, he asks if it was really worth it.
Were the instants of joy worth the stretches of sorrow?
Were the moments of beauty worth the year of pain?
V.E. Schwab, The Invisible Life of Addie LaRue
The minute the door opened, I knew the news was bad. Dr. Marquez had been crying, and Dr. Nicholson looked like he wanted to. The nurse had told us they were running late, but instead of bursting into the room with their normal cheerful greetings and “The scan looks good!” they murmured an apology for keeping us waiting and paused to take a collective deep breath.
“The scan shows new growth on the top of Jimmy’s brain, in his ventricles. It’s relatively small and doesn’t enhance on the scan. But it’s there.”
I stopped listening. How could this be? Jimmy had been the quintessential “standard risk” medulloblastoma kid. Single tumor. No metastases anywhere, a fact confirmed by expert second opinions. No trace of cancer cells in his spinal fluid. He’d blazed through radiation and nine rounds of chemotherapy without a single complication or hospitalization for infection. 80% of the kids like him were cancer free at five years. Jimmy was barely two years past his initial diagnosis.
Dr. Nicholson’s voice interrupted my thought spiral. “I want to confirm the findings on the scan with an endoscopic biopsy. I’ve already talked to the pediatric neurosurgeon, and he’s going to get Jimmy on his schedule in the next few days. After that, we’ll want to start treatment right away.”
That night, I lay in bed staring up at the faint silvery shadows dancing on the ceiling and tried to absorb the news, Dan asleep next to me, his breathing soft and rhythmic. From the medical science to the smallest of harbingers like upturned pennies and ladybugs landing my hand, all signs indicated that Jimmy would be in the “good” percentage. The kids who survived their brain cancer and went on to live rich, full lives made all the more meaningful because what they’d been through.
I made a mental list of all the side effects Jimmy had already experienced from treatment––hearing loss, issues with balance, impaired spinal growth, thyroid damage. Then I started a second list of all the potential long term effects––secondary cancers, stroke, cognitive impairment, cardiovascular disease. In the past, whenever I started what-iffing like this, I would remind myself that Jimmy had to be here to have long-term effects. That we would deal with them when and if they presented themselves. That there was no point in fretting over what hadn’t happened yet. But with five to six rounds of intensive chemotherapy and more radiation looming in his future, these treatment effects felt neither far off nor unlikely.
More thoughts ricocheted through my head. Molly had been pleading for a baby sister or brother for the past year. We had never intended for either of our kids to be an only. I briefly entertained the idea of having another baby but the magnitude of tending to an infant and a child undergoing cancer treatment felt undoable and unfair to both Molly and Jimmy.
What would it take to care for my son while he underwent repeated rounds of high dose chemotherapy? The constant worry about infections and exposure to illness in the petri dish of high school. The month in the hospital while he recovered from a stem cell transplant. The juggling required to get Molly to and from school and her other activities while keep her life as normal as possible.
My mind sprang ahead to the worst outcome. Did I have the courage to nurse a dying child? Could I handle the demands of end-of-life caregiving? Would we be able to control Jimmy’s pain, ease his fears, keep him comfortable and at home? Could I face my own sadness and despair and hold Jimmy’s at the same time? Once he died, would I have the strength to start over when the life I knew no longer existed?
I began bargaining in the dark, trying to make a deal with a silent, invisible life force. Atoning for sins, proffering promises, attempting amends in exchange for the only outcome I desperately wanted. Trying to influence or change a future I couldn’t fully envision anymore.
It had never occurred to me that Jimmy could actually die. I had believed so fiercely in the clear-until-today scans, my own imagined maternal superpowers and the 80% survival rate that I had never even acknowledged there was still a 20% chance he would not.
How do you parent without a safety net, knowing that cancer could steal your child from you at any moment? How do you stay present for a son whose future is no longer certain?
I had no idea.
I thought about my cousin Seymour, my second father who had declined slowly then rapidly, dying of an “occult” cancer the doctors were unable to find. My friend Traci’s 40-year-old husband who had died of a heart attack a few blocks from their house while out on a run. The child in Molly’s school, playing with a scarf on a top bunk, found entangled in it by her grandmother, who couldn’t be revived.
None of us know how much time we have left, I realized. Jimmy might still go on to have that shiny, beautiful life. Or he could die of his cancer, or something else. It was impossible to know. I’d been so focused on trying to manage his medical care, and treatment, thinking I could control the outcome that I’d lost sight of what I did have control over .. our time together and how we spent it.
I took a deep breath and reminded myself that tonight, Jimmy is still alive. Healthy, pain free and asleep in his own bed. In a few hours, the sun will rise. The kids will drag themselves out of bed and head off to school. We’ll have extra crispy pepperoni pizza for dinner and start making plans for trips and adventures during and after treatment. We’ll watch an episode of Friends and talk about the happenings at school that day. Then, when Dan and I tuck them in, we’ll have one of those heart-to-heart chats in the dark about whatever’s weighing on their minds.
I knew that the pain of losing Jimmy would be searing, no matter when or how it happened. But there, in the dark, I vow to make it worth the pain. To fight like hell to keep him alive as long as I can. To be present for all those sweet moments of ordinary joy. To hold onto fiery determination, starlit grace, laughter and hope .. whatever it takes to make the days we have left both worthwhile and beautiful. To make the time we get be enough. Because in the end, it would have to be.