The “one in a billion” brothers

“Your child has cancer.” It’s a sentence no family wants to hear—and one the Henry family has heard not once but twice. As her two sons, Collin and Patrick, both battled for their lives, Kathleen Henry found a strength and a voice she didn’t know she had.

The “one in a billion” brothers click to enlarge Patrick and Collin Henry

It’s been more than six years since Kathleen and Robert Henry’s youngest son, Collin—not yet a week past his second birthday — was diagnosed with acute lymphoblastic leukemia (ALL).

“On May 11, 2008, I was a ‘normal mom,’ too, and by 5 p.m. the next day, I was in ‘the club,’” Kathleen says of getting the diagnosis.

ALL is the most common type of cancer in children. Being diagnosed meant that Collin’s bone marrow was making too many lymphocytes, a type of white blood cell.

With Robert, a sergeant first class in the United States Army, serving in Iraq, Kathleen sat alone at Collin’s bedside on the fifth floor of N.C. Children’s Hospital that first night, the enormity of the news just starting to sink in.

“I found myself at 3 a.m., numb and alone, the newest member of the childhood cancer community,” she reflects of those moments in room 5C01, forever cemented in her mind. “Why did this happen?”

It was like a lightning strike, Collin’s care team told the family of five, which included Collin’s two older siblings, Lacey and Patrick, then 7 and 4. There wasn’t anything Kathleen and Robert did or didn’t do that caused Collin's leukemia; it was just something that happened. But the prognosis was good. And they wouldn’t be alone in their battle for Collin’s life.

Years of chemotherapy followed, and the Fayetteville, N.C., family developed a new routine that included a lot of time spent at UNC Hospitals for Collin’s treatments.

Never, ever would they have imagined that lightning could strike again. No sensible person would. But it did, two and a half years later. This time it was Collin’s older brother, Patrick. The 6-year-old had developed a painful lump on his right side, just below his ribs. Even before the tests came back confirming her worst nightmare, Kathleen knew: it was cancer again — only a much rarer, more formidable type, stage II hepatoblastoma, a solid tumor of the liver.

“[Patrick] was given a 20 percent chance of surviving,” recalls Kathleen. “I defiantly said, ‘Someone has be to that 20 percent, and it’s going to be Patrick!’ But the weight of that grim percentage didn’t escape me. I laid in bed, holding his itty bitty hand as he slept. I literally watched his chest rise and fall, feeling like I was running out of time to enjoy my smiling boy.”

There is only one other documented case of siblings sharing these diagnoses — one in a billion odds, Kathleen says.

“It’s incredibly rare to have two kids with cancer the same family,” affirms Stuart Gold, MD, chief of pediatric hematology-oncology at UNC and a member of UNC Lineberger Comprehensive Cancer Center. “There are some types of cancers that do run in families, but not these, so this is a particularly rare occurrence.”

The 90-minute trips to UNC for treatment climbed ever upward — more than 100,000 miles traveled back and forth. While Robert spent long stints overseas fighting for his country, his boys fought for their lives, their mother ever-present at their sides.

“I think I went on autopilot at some point during this journey — multiple points actually,” Kathleen recalls. “I had a love-hate relationship with chemo. I hated what it did to my babies, loved that it was killing the cancer.”

Collin's beads of courage.Kathleen offers a collection of colorful beads, hundreds of them, that Collin amassed during his treatment as a visual representation of what her boys endured.

“These are Collin’s Beads of Courage,” she explains. “He received one bead for every single thing he endured. Pokes, chemo, clinic visits, X-rays, etc.”

She points to a specific bead, what she calls a “tortoise bead” for the brown tortoise shell pattern. “These represent his spinal taps. [ . . . ] He has more than 50 of these beads alone.”

It’s been a long, difficult road for the Henry family, but Kathleen will tell you that the bad memories are balanced with many good — recollections of the doctors and nurses who have become part of the Henrys’ extended family, of Nerf gun assaults on caregivers that made the boys howl with laughter, of other pediatric cancer families they have met along the way who have helped carry the burden.

And best of all, despite the long odds, both Collin and Patrick are in remission, currently off treatment. Collin, now 8, just celebrated a year chemo free, and Patrick, age 10, is three and a half years post chemotherapy and still cancer free. They spend their days focused on school and their favorite pastime, baseball.

“It’s endless baseball around our house,” Kathleen says with a laugh. “Their father coaches both of their teams, so we have baseball every night of the week.”

As for Kathleen, she advocates tirelessly for pediatric cancer research to anyone who will listen.

“There have been just two new pediatric cancer drugs approved by the FDA in the last two decades,” she laments. “The drugs they give our kids aren’t designed for kids. We get the hand-me-downs, which in turn destroy their little bodies. It’s ‘survival with a price’ for the ones lucky enough to survive.”

Kathleen’s advocacy has led her to get involved in various cancer awareness organizations and activities designed to support pediatric cancer patients and their families. In 2011, she shaved her head for the St. Baldrick’s Foundation, a volunteer-driven charity that funds more in childhood cancer research grants than any organization except the U.S. government. She is also active in 46 Mommas, a St. Baldrick’s group named for the approximately 46 mothers of school-aged children told each day that their child has cancer. She has traveled as part of that group to talk to members of Congress about the need for greater research funding.

“I’d like to see the day when cancer is much like other diseases, easily and quickly eradicated,” she says. “The children you love, who could be diagnosed tomorrow, are worth so much more than the miniscule amount that is tossed their way in research funding each year. Action is necessary in this battle, be it a donation of money or writing a letter to our government reps, and I want to be the kindle that lights that flame.”