How 3 decisions impacted my son’s journey with cancer

“Cancer, like a cruel master, forces you to stand up and keep walking when all you want to do is stay down and hide.”

You won’t find those words in the pages of my book, ALL THE ABOVE: My Son’s Battle with Brain Cancer. Instead, you can find them in an Amazon review, written by a stranger who knew neither me nor my son, yet understood our struggle all the same.

Seven years and three days ago was my son Jack’s 19th birthday. It was a Saturday, and the first day of summer vacation after his freshman year at UGA. It was also the day he learned he had a brain tumor, and our world was forever changed.

During final exams the week before, Jack had experienced blurry vision. I thought he was just overtired, or could have been using too many allergy drops. At his request, I planned to get him an appointment with our optometrist the next week.

But that Saturday morning, his eyes were crossed and he didn’t seem to know it. I called my next door neighbor, our eye doctor and a friend, and she saw him immediately.

After examining Jack, she spoke to my husband and me in private. In a trembling voice, she told us Jack either had meningitis, extremely high blood pressure, or a brain tumor.

He’d had the meningitis vaccine, so I prayed it was “only” high blood pressure. But my prayer went unanswered. Hours later, after an exhaustive exam by an ophthalmologist on call, followed by an MRI at Northside Hospital, a neurosurgeon broke the news. Just behind his optic nerves, a tumor was wreaking havoc on Jack’s eyesight and damaging his retinas.

Stunned, the three of us listened as the doctor explained that Jack needed emergency surgery that night, not to remove the tumor, but to place a shunt in his brain to save his vision. Without it, he would be blind within days.

Jack signed the consent forms and a hastily written advance directive. The surgery was successful, and his vision started improving almost immediately. He came home the next day with a big bandage on and staples in his head. Over the next few weeks, as he recovered, we contacted a handful of top neurosurgeons around the country, and began figuring out what to do.

What happened over the next six months is chronicled in my book. Although it’s a true story, it isn’t merely a retelling of facts, interspersed with doctors’ notes and records. It’s about the way Jack handled his illness, and what our family did to try to help him. Written from my point of view, it describes my emotional struggle when cancer forced my teenage son to stand up and walk, as death stared him in the face.

At the beginning of his journey, Jack made three decisions, all of which would serve to help both of us over the coming months.

First: To stop asking himself, God, or anyone why he had a brain tumor. The doctor had said that no one knew why he had it. He could have been born with it. He could have developed it over time. Instead of casting blame, Jack focused all of his energy on getting better, and on doing whatever he had to do to get well.

That night – and almost every night that summer – Jack and I talked alone in his room before he went to sleep. We didn’t always talk about his illness. But we did when he wanted to, and he shared his feelings with me, and leaned on me emotionally.

But during those first few days, he kept what was going on in his life private. He didn’t want to tell his grandparents, or anyone in our large extended family yet. Dennis and I respected his wishes, and his right to drive the flow of information to family and friends – and not until he was ready to do so.

Choosing not to ask why – not to blame anyone or anything – was key to helping Jack move forward. It also influenced his decision to keep matters private at first. Shock was just beginning to wear off, and the last thing he needed were questions about the cause of his tumor – questions he couldn’t answer.

Second, Jack chose to not feel sorry for himself. He didn’t want anyone’s pity, saying it wouldn’t make him feel better, and might make him feel worse. After a few days, he told a few close friends and family members what was going on, but instead of dwelling on his situation, his strategy was to keep busy and not think about it.

As soon as he was able, he went to play basketball at the YMCA. In mid May, he began a 5-week drama camp internship that he had lined up in the spring. He volunteered at a comedy club, played golf, and went to a Braves game.

He also listened to what the doctors were telling him, about what he had to do to survive. He spoke on the phone with the neurosurgeons we reached out to, and absorbed what they said. After he made decisions about who to see and where to go – once Jack had a plan – he let more people know about his illness. But he still didn’t go public. He owned his journey and what was happening to him in the way that strengthened him, and used all his energy to fight the disease. He stayed positive and hopeful, and his courage was inspiring.

Third, Jack didn’t let others tell him how to feel. Just before his sophomore year at UGA, a radiation oncologist chastised him for being dismayed that he was going to lose his hair. Jack bristled at her words and seemed shaken. “Oh, come on,” she said to him, in front of me. “You’re a guy! You shouldn’t care if you lose your hair!”

Moments later, on our way home, he told me how much her cavalier attitude and judgment hurt. “She has no right to say if I should I care,” he said. “It doesn’t matter that I’m a guy. She has no idea how I feel, and she shouldn’t tell me how to feel.”

He was right. I was powerless to protect him from the insensitivity of others, but glad that he shared his reaction with me.

A quote at the beginning of Chapter 2 in ALL THE ABOVE sums up my own feelings that day, and almost every other day during Jack’s battle with cancer. It’s from a novel called A Tree Grows in Brooklyn, by Betty Smith.

“It’s come at last,” she thought, “the time when you can no longer stand between your children and heartache.”

Jack’s story is one of triumph. He was one of the lucky ones. He survived brain cancer. Today he is 26, living and working in New York, and has been cancer free for over 6 years. He was glad I wrote ALL THE ABOVE and excited about its publication. When I finished writing it, I added one final quote on the page before Chapter 1. It’s a quote from Jack himself:

“Just try (not all at once, just step by step), to have hope. Resiliency is a wonderful thing. Sometimes something great happens when all feels lost.”

 

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