A worrywart mom learns to let go
when her son battles brain cancer
“Can you get me an eye doctor appointment for Monday, Mom?”
It was a typical Saturday in May, and my middle child, Jack, was just home for the summer from his freshman year at the University of Georgia, where he was studying accounting.
Over the past few days, he’d called me from Athens, saying he couldn’t see words clearly during his final exams. I was convinced he was just overtired or using too many allergy drops.
“Suck it up, and just get through your exams,” I’d told him. He had all summer to see an optometrist, I thought.
Besides, my mind was preoccupied by my youngest child, Annette, a ninth-grader at St. Pius X Catholic High School. She’d recently undergone minor plastic surgery on a small patch of skin on her abdomen for a rare condition that was more annoying than troubling. I had just walked into the den of our brick Colonial-style home in Brookhaven to check on her as she lay on the floral-print sofa, resting. Jack was in the red club chair nearby watching television.
“I’m getting tired of seeing double,” he said.
Startled, I looked up at him and flinched. My slim, athletic, 6-foot-4-inch-tall son’s eyes were crossed. My throat tightened and I reached for the phone to call Dr. Kelly Barrows.
A life of worry
All my life, I’d been a worrier. I could get anxious about anything, and usually did. I’d been a nervous overachiever in school and at work. When I had children, I often lay awake at night, giving in to irrational fears and imagining the worst in every situation.
When they were little, I worried about how they were doing in school, academically and socially. I feared they would get hurt playing sports. When they were teens, I was afraid they would get in a car wreck and become injured or die. When they went to college, I feared they wouldn’t adjust, might start binge drinking or stop going to class and flunk out.
Hoping I could prevent any potential catastrophe, I continually tried to anticipate problems and plan for contingencies. Eventually the stress of constant worry took a toll. I began experiencing frequent headaches and migraines. Sometimes I suffered bouts of depression.
Over the years, I missed many of the children’s school events because I was in bed at home with a worry-induced headache. Once I was so nauseous with a migraine during afternoon carpool, I had to pull over to vomit. On a family trip to Italy, I woke up with a migraine so bad I missed the first full day of our eight-day vacation.
No matter how hard I tried to prevent it, my mind would race with worries. But none of the potential disasters I imagined ever became reality. Now the one thing I never worried about was about to happen.
That Saturday in May was Jack’s 19th birthday, and the whole family had planned to celebrate at Dave & Busters. Instead, Jack was on his way across the street to see the optometrist, also a neighbor, in her home office.
While he was gone, my husband Dennis and I waited nervously at home, watching for his return through the window. Fifteen minutes later, when I saw Jack walking toward the house with Dr. Barrows behind him, fear took hold of me.
She asked to speak with Dennis and me privately.
“What he’s got is serious,” she said, trembling. “It can only be caused by one of three things: extremely high blood pressure, meningitis —”
“He’s had the vaccine,” I cut in.
“Or — or, it could be a — a brain tumor.”
No, it couldn’t be.
A short time later, Dennis, Jack and I were in the office of her colleague, an eye specialist, who said something in Jack’s brain was pressing on his optic nerve. We were instructed to take him right away to Northside Hospital’s emergency room for an MRI of his brain.
That evening, when we should have all been celebrating his birthday, Jack laid on a gurney, his dad and I flanking him, in a small, dim examination room as the neurosurgeon on call confirmed the worst. Jack had a brain tumor that was causing hydrocephalus, a buildup of fluid on his brain. He would have to undergo surgery immediately to place a shunt in his brain to drain the fluid or he could be blind within days, if not hours.
Stunned, I could barely process what was happening.
The middle child
Jack had been a sweet, adaptable child, and though somewhat shy, made friends easily. With older twin brothers and a younger sister, he was a classic middle child: a peacemaker. He easily entertained himself and often preferred to fly under the family radar.
In school, math was his favorite subject, but he did well overall and took AP and honors classes in high school. As a teen, he had his share of disappointments. Despite his height — and years of practice — he didn’t make the high school basketball team. Then he tried football and gave it everything he had, but he got little time on the field. Later, he found a passion in acting and landed the role of innkeeper Monsieur Thénardier in his senior musical, “Les Misérables.”
As a middle child myself, I could relate to Jack’s personality. With a sister five years older and a brother six years younger, I grew up comfortable with solitude, and was sensitive and shy. Unlike Jack, I didn’t get involved much in high school and graduated a year early. At 17, I was a freshman at the University of North Carolina at Chapel Hill when I met Dennis, and we became college sweethearts. We married just after college and a few years later, our twins were born. For the next five years, we had our hands full, then Jack came along, and three years later, Annette. We had gotten our wish for a big family, and our busy life was full of joy and laughter.
Along the way, we had some challenges and setbacks. In the beginning, we lived paycheck to paycheck, saving next to nothing. When I quit my job to stay home with the babies, we learned to live on one income. We had bad luck in real estate and lost money on two homes when we moved for new jobs. We recovered financially, but when our twins became teens, parenting grew more stressful as we juggled them and our younger two.
Our children were mostly unaware of our problems, though, and our family was healthy and happy. In 2007, Dennis and I threw ourselves a 25th wedding anniversary party and invited all our friends. Jack made an impromptu toast that was so sweet and funny there wasn’t a dry eye in the room when he was done. Now, just three years later, we were facing the unthinkable. How could Jack, who was never sick, never had headaches, and, until a few days ago, never had vision problems — how could he have a brain tumor?
Don’t ask why
It was midnight now. My eyes brimmed with tears as I kissed Jack’s forehead and watched as he was rolled away to the operating room. Then Dennis and I went to the waiting room, empty as a tomb, to pray. Please let Jack live.
Just over an hour later, the surgeon found Dennis and me in the waiting room and told us that everything had gone well. The shunt running inside Jack’s body from his brain to his abdomen was doing its job draining the fluid and taking pressure off his optic nerve. We spent the night in Jack’s room, and the next morning his eyes were no longer crossed. His eyesight had already improved so well he could read the birthday wishes on his phone.
Jack was discharged that evening, with staples in his head and abdomen. The doctor had saved his vision, but the tumor remained and had to be dealt with. But that couldn’t happen until Jack recovered.
That night at his request, Jack and I had a talk in his room before he went to sleep. His long frame was stretched out under a plaid comforter on his queen-size bed. I sat down on the edge. One side of his head had been shaved, but his unruly, long brown hair filled the other. He was in shock, not just about the tumor, but also about the shunt.
Knowing it was in there permanently made him feel weird, he said, like a freak.
“No one can see it, though, and you can’t feel it,” I said. “The doctor said lots of people have shunts, anyway, and that you can live your whole life with it. Plus, you needed it. It kept you from going blind.”
“But, Mom,” he said, his eyes misty. “Why do I have a brain tumor?”
I’d been asking myself that question for the last 24 hours, and I couldn’t do it anymore.
I told Jack what the neurosurgeon had told Dennis and me: No one knew for certain what had caused his tumor, or when it started growing. He could have developed it over the last few months or years, or he may have been born with it.
“No matter what caused it, or why,” I said, “I think we should decide something together, right now. Let’s not even ask why. If we do, it’ll only drive us crazy, and it’ll drain our energy. And we’re going to need all our energy and strength to get you well.”
Semblance of normalcy
Over the next couple weeks, as Jack recovered from the shunt surgery, reality set in and we started figuring out what to do next.
We were advised that no matter what kind of tumor it was, Jack would have to undergo brain surgery. Deciding who would do that surgery would be a critical process of elimination. We contacted a handful of top neurosurgeons around the country, sent them copies of Jack’s brain scan and waited to hear back.
Meanwhile, Jack started an acting internship he’d lined up months earlier with a theater camp for high school students at a church in Decatur. Our whole world had changed, but Jack was determined to go on with his life, keep busy and try not to think about the tumor. Almost every night, though, he and I talked in his room right before he went to sleep.
We didn’t talk only about his illness. Sports, TV shows, his job, his siblings — those were the subjects, or whatever else Jack wanted to discuss. But when we ran out of things to talk about, we spoke about our developing strategy to get him healed. Finding out he would have to go “back on the table” had been a crushing blow, but he understood it was necessary.
“I’m gonna make it, though, right, Mom?” he’d often ask.
“Of course you’re gonna make it! Remember, we’re not taking ‘No’ for an answer,” I told him, again and again.
But after I said goodnight and went to bed, I often cried myself to sleep. No matter how much I tried to reassure him — and myself — I was filled with worry and despair.
May turned into June, and Jack began slowly putting word out about his illness to his close friends. But, at Jack’s insistence, extended family members were still in the dark. He didn’t want to discuss it or answer any questions until he knew where he would have surgery.
Then, in mid-June, we found our neurosurgeon, Dr. Allan Friedman at Duke, in Durham, N.C. We made an appointment for the last week of the month. We learned that doing a biopsy prior to removing the tumor was too risky. It would have to be removed and then analyzed by pathology.
Now that we had a plan, Jack began letting our large extended family and friends know what was happening. Everyone rallied around him, and I felt relieved to tell those who cared about us. But truth be told, I’d also needed time to digest things before going public.
Just before we left for Durham, I talked with my father privately and told him how I’d been feeling.
“Dennis and I have been through some difficult things before, and so have you and Mom,” I said. “But nothing we’ve ever been through has been as hard as this. Whenever we’ve gotten through one challenge, though, another one always comes along to replace it! Why can’t everything be good at the same time?”
My dad shook his head. “Honey,” he said, “that’s not life. That’s called heaven.”
Wait and pray
Fear began to hit, and hit hard, when we got to Durham.
Dr. Friedman explained that without surgery to remove the tumor, Jack would probably die in a little over a year, or sooner. Jack was admitted to the hospital that afternoon, but only one of his parents was permitted to spend that night with him. He asked me to stay; Dennis would sleep at the hotel.
When I said goodnight to Dennis in the hallway, my tears flowed. Recovering, I put on my bravest face and reentered Jack’s room. I had worried about so many things over the last 20-plus years, the vast majority of them trivial. For decades, I’d been a prisoner of my expectations: Rather than living in the moment, I’d been constantly stressed out about the future and what might happen next. But now, for the first time, I faced the possibility that my child could die. Jack’s life was the only thing that mattered. Would this night be his last?
We had confidence in Dr. Friedman, but the risks of the surgery were great. Even if Jack made it through, we didn’t know how his life might be affected. Would he be able to walk and talk? Would his brain keep working? Would Dr. Friedman be able to remove all the tumor cells, and if so, would Jack be healed? Or would he still have brain cancer, and would it ultimately kill him?
That night, Jack told me that he was terrified, and I admitted I was, too.
“We have to have courage, though,” I said, to myself as much as to him. “Being brave doesn’t mean we don’t have fear. We’ll get through this, I promise.”
We hugged each other and cried. Somehow, we both got to sleep. Then, very early the next morning, the door to his room opened and a sliver of light pierced the room like a dagger. It was time.
Dennis followed the nurse into the room, and in minutes we were on our way to pre-op. No amount of worrying would change what was about to happen. My baby boy was staring death in the face, and there was nothing I could do.
All I could do was stand by, wait and pray.
Dennis and I kissed our son goodbye, and he was whisked away into the operating room. We found our way to the neurosurgery waiting room and sat down. An hour later, we were advised that surgery had begun, and that it would take at least four hours.
Over the last several weeks, even as I had tried to reassure Jack, fear had been my daily companion. Now I felt numb. I imagined Jack’s long body stretched out face down on the table. I tried not to picture the back of his skull being cut open, a piece of it set aside while Dr. Friedman removed the tumor.
The hours passed, and it was mid-afternoon when Dr. Friedman met with Dennis and me in a private, post-op consultation room; a box of tissues sat on the small coffee table. The surgery, he told us, was successful. He’d been able to extract virtually all of Jack’s tumor cells. However, a small amount of them remained, because they were too close to Jack’s eyes and too risky to remove. But we could talk about what to do about that later.
I felt relieved and utterly drained. A short time later, we were allowed to join Jack in ICU. As soon as I saw him, my heart leaped to my throat. He had a huge, thick white bandage wrapped around his head like a turban. But he was awake and talking, and he knew us. Every 15 minutes, a nurse tested him, asking him where he went to college, when his birthday was, and who was the president. She had him hold out both arms as if he were carrying a pizza box. He passed each time. His brain was working.
A few hours later, we had to leave, and Jack spent the night in ICU. But early the next morning, we were in his hospital room, where we stayed until he was discharged a couple days later.
On doctor’s orders, we all stayed at a nearby hotel for a week, so Jack could be close to the hospital in case of emergency. We were also waiting for the hospital pathology report, which would reveal what type of tumor Jack had.
When the report came in, we met with the brain cancer team at Duke. Our prayers had been answered. Jack’s tumor was the most curable kind: a germinoma. It was extremely rare — only one in 7 million people got it, most of them young adult men, and no one knew the cause. After he recovered from surgery, he would have to undergo five weeks of radiation treatment to eradicate the remaining tumor cells. But he could do that back in Atlanta at Emory.
As we drove home, my heart was full of joy and hope. I sent messages to our loved ones, giving them the news and thanking them for their prayers. Whatever lay ahead, whatever we had to do next, we could do. Worrying about the future, like asking why Jack had the tumor, wouldn’t help. It only served to breed anxiety that taxed my strength and energy.
Miraculously, Jack returned to UGA that August for his sophomore year wearing a ball cap to cover his bald head, his hair loss a result of radiation treatments.
In October, he had his first post-radiation MRI. It was clean.
Learning to let go
It was a clear, sunny April day in Athens, nearly one year from the day Jack was diagnosed with cancer. Dennis and I lined up with hundreds of other supporters at the entrance to the UGA intramural fields. We were there to watch and cheer Relay for Life, held annually in communities around the country to raise money for cancer research, as well as to celebrate survivors and remember lost loved ones.
The event featured a relay race through town ending at the field where cancer survivors and caregivers would walk a lap around the track lined with luminaries — candles burning inside white paper bags bearing the names of those who had battled cancer.
Jack was the final runner, the one who would carry the Torch of Hope onto the field. As I watched my boy run in, leading a throng of UGA students behind him, I felt a surge of emotion, and happy tears filled my eyes. We had come so very far. My heart was bursting with joy and thanksgiving.
Later, volunteers handed out purple and white balloons and Sharpie markers to all the survivors and caregivers. We were told we would soon release the balloons into the sky. But first, we were to write a word or a phrase on our balloons representing something we were ready to let go of.
I don’t remember what Jack wrote, but I wrote one word on my purple balloon: Fear.
In the years since Jack’s battle with cancer, I can’t say I’ve had zero worries or anxieties. But I don’t lay awake at night anymore, imagining the worst or fretting about the future. During his journey, I discovered that I’m tougher than I realized, and his resilience inspired me. Watching him fight cancer with courage, optimism and hope taught me to live in the moment and to be thankful for each day.
Fear is no longer my daily companion; it’s been replaced by gratitude.
ABOUT THE STORY
As a novelist, Julia McDermott was accustomed to telling fictional stories, but when her 19-year-old son battled brain cancer in the summer of 2010, she felt compelled to write a memoir about the experience in “All the Above: My Son’s Battle with Brain Cancer,” a finalist for the 2016 Georgia Author of the Year Award. It is an inspiring story about how quickly life can change and how a brush with mortality can inspire gratitude. To learn more, go to juliamcdermottbooks.com.
Suzanne Van Atten
Personal Journeys editor
ABOUT THE AUTHOR
Julia McDermott earned a B.A. in economics and French at the University of North Carolina at Chapel Hill. At 22, she married and worked for several years in banking and IT, and then stayed home to raise her four children. When her youngest was in middle school, she began writing and produced three novels. After her son, Jack, recovered from a brain tumor in 2010, she wrote a memoir about the experience called “All the Above: My Son’s Battle with Brain Cancer,” a finalist for the 2016 Georgia Author of the Year Award for memoir. She lives in Atlanta with her husband and family.