We’ve all heard the old saying about heroes. In movies they have capes, but in real life they walk among us wearing combat boots and dog tags, in hospital scrubs or in the uniform of a supermarket checkout clerk.
But some heroes are so cleverly disguised no one notices them. They wear yoga pants or polo shirts and khakis. They drive mini vans instead of ambulances or tanks. They have no superpowers, yet they fight the most feared villain on the planet.
These heroes are the parents of children with cancer. My friend Megan is one of them.
Fourteen years ago, Meghan arrived at the hospital to deliver her first child. She went into labor three weeks early, but otherwise her pregnancy was normal, or so she thought.
Meghan glimpsed her son’s face for just a few brief seconds after he was born. He struggled to breathe and was immediately whisked off to the neonatal intensive care unit. He started breathing again, but they discovered a lump near his hip. They did some tests.
When Meghan’s son was two weeks old, he was diagnosed with stage three cancer.
If you’re a parent, you probably want to walk away right now. I know. It’s too awful to think about. But please keep reading. There’s a happy ending here, I promise.
Meghan and her husband Chris found themselves in a place no parent ever wants to be—in the office of a pediatric oncologist. He told them their son Joseph was born with cancer. “We didn’t even know that was possible,” Meghan said. The doctor said Baby Joseph was one in a million, but unfortunately not in a win-the-lottery kind of way.
They cried. Then, with a battalion of doctors and nurses leading the charge, they began their battle with rhabdomyosarcoma, a rare form of cancer.
Chemo was the first weapon they deployed. Joseph started treatment when he was two weeks old. Meghan held his tiny hand and tried to comfort him as he screamed during his treatments. When they weren’t in the chemo room, they were quarantined at home, forced to practice social distancing long before social distancing was cool. Joseph was five months old before he could safely be around other people.
After several rounds of chemo, the doctors decided it was time to remove his tumor. They did something called a “resection,” a procedure to remove a cancerous tumor and hopefully, any cancerous tissue around it.
They got the results.
Baby Joseph still had cancer cells in his body.
He was growing, and the cancer was growing with him.
They decided to bring in the big guns: photon radiation. The good news; photon radiation would probably kill the cancer cells. And the bad news? It would also kill the healthy cells around the tumor. Because the tumor was located near Baby Joseph’s hip, the doctors told Meghan and Chris their son would spend the rest of his life in a wheelchair.
“And if we don’t do it?” they asked.
“He’ll die,” the doctor said.
But there was one other option, an option never before used on a child as young as Joseph. Their tenacious doctor learned about a new kind of radiation, this one called proton radiation at the M.D. Anderson Cancer Center in Houston, Texas. Proton radiation was much more precise. It could zap the cancer without damaging any of the healthy cells nearby. It was risky, but their options were shrinking as the cancer grew.
When Baby Joseph was seven months old, he and his parents moved to Houston for two months so he could undergo twenty-three rounds of proton radiation He was the youngest child in the world to have this procedure.
Every morning his tiny body was sedated for treatment. His favorite music was the Curious George soundtrack, so the nurses played it for him as he was put to sleep.
When the treatment ended, Joseph and his parents returned home and waited two weeks to see if it worked. By this time, Meghan knew all about waiting. The waiting, she said, was always the worst part.
They crossed their fingers and did a biopsy.
Bad news. Again.
Even after months of chemo and twenty-three rounds of proton radiation, Baby Joseph still had cancer cells in his body.
There was only one weapon left in their arsenal, and it was a weapon they didn’t want to deploy. It was the hard, ugly, high-risk type of chemo, the kind reserved for the really sick, the kind of chemo with terrible side effects.
But Baby Joseph was out of options. He celebrated his first birthday at the hospital where he started chemo again.
For nine months his little body was pumped full of toxic medicine to kill the cancer. He lost his appetite. His hair fell out. He lost a third of his bodyweight. His mother remembers, “That was the scariest time. For the first time he looked like a very sick cancer patient.”
He was barely a year old.
After several rounds of the high-risk chemo, they did another biopsy. Megan’s husband Chris called her with the results. He was on his cell phone, standing outside their front door.
He said, “Bring our cancer free child outside.”
Meghan dropped the phone, collapsed on the floor and cried hysterically.
Joseph had two more rounds of chemo, to make sure the cancer was really gone. Then, on December 18, 2007, he went to the hospital for the last time. He celebrated by having the tube in his chest removed as he and the nurses partied to the Curious George soundtrack. His mother celebrated by going into labor with Joseph’s sister.
Fast forward 13 years. Joseph now has three younger siblings. And he’s still cancer free.
But although the cancer is gone, some painful reminders remain. A stray beam from the proton radiation severely damaged Joseph’s hip, and the ball of the hip began to fall out of the socket. To keep it stable, Joseph had surgery.
He entered first grade with pencils, crayons and a walker. Joseph couldn’t run at recess, but he could play with Legos, which is how he and my son Erik became close friends.
In 5th grade Joseph had another hip surgery, and he will continue to need surgery as he grows. This means a childhood without sports, bouncy houses, or trampolines. In high school, he will have the dubious pleasure of studying for the SAT and having hip replacement surgery at roughly the same time.
But that’s in the future. Cancer has taught Meghan to live in today. “When you’re told your child has cancer, your world shuts down and it’s ground zero. After that, nothing else matters. It helped us keep perspective,” she said.
Meghan is the most generous and thoughtful person I know. There’s no judgment with Meghan, just grace. Her deep well of compassion and patience is another side effect of the chemo and the biopsies, the waiting, the worry and the pain.
“We argue about homework, and then I go to the Ultimate Hike and meet parents who have lost kids, who hike in memory of a child they lost to cancer. I see that my son’s life was almost cut short. After that, you don’t get bogged down by the mundane. You realize that so much is just details, and you have to enjoy it.”
In a few weeks Joseph, the boy who has a metal plate and pins in his right hip, will hike twenty miles through the mountains of West Virginia. He will be accompanied by my son Erik, their good friend Lauren and Joseph’s enthusiastic, organized and indefatigable father, Chris.
It’s called The Ultimate Hike and it’s sponsored by Cure Search, an organization searching for a cure for childhood cancer.
Joseph, Erik, and Lauren have been spending their weekends doing training hikes in one- hundred-degree heat to prepare. They would like to raise at least $2,400 each and have a team goal of raising $10,000 for childhood cancer research. If you would like to help them, you can donate here. To those of you who have already given, thank you, so much.
So, Superman can wear his nifty red cape, and Batman can have his mask. But parents who walk through cancer with a child are the real heroes, fighting a terrifying disease armed with only love and courage. By supporting cancer research, we give these doctors and parents medical superpowers, so they can save the day when a child needs to be rescued.
By hiking and donating, the rest of us are transformed into honorary sidekicks. We see the Bat Signal up in the sky and we respond. We get to be Super Girl, or Robin, racing down the streets of Gotham in the sidecar, helping the hero vanquish the bad guys.
Thank you for reading this. See you in the Bat Cave.