When his daughter was diagnosed with brain cancer, one dad learned the reality of children’s oncology wards and the lack of federal funding making things harder.

Paul Barry
Paul Barry and his daughter Hannah. Courtesy of Paul Barry

I look back to 2017, a time when my life felt perfect—I had a strong and loving marriage and two daughters who were full of life. Nora was a bright and curious 1-year-old and her sister Hannah was thriving as she approached her seventh birthday. But everything changed in the blink of an eye when a spell of sickness and vomiting turned out to be brain tumor and we instantly went from being a normal family to a childhood cancer family.

Shortly after her seventh birthday, Hannah was diagnosed with a brain and central nervous system tumor called medulloblastoma, the most common brain cancer in children. Treatment is brutal: surgery followed by radiation to the whole brain and spine and then a year of grueling chemotherapy.

I know about the complexity of radiation therapy through working at Elekta, a company that develops and sells radiation therapy hardware and software. I fondly remember treating kids just like Hannah in the course of my work and know firsthand that a kid with cancer will capture your heart. Given my background, I probably had a slight advantage over other families facing childhood cancer in that I had knowledge and trusted contacts to verify and validate my fears and expectations. But my background did little to prepare me for everything our family went through.

Unfortunately, Hannah was one of those kids for whom everything that could possibly go wrong did, and she took her last breath surrounded by family on a beautiful sunny March day in 2018, just nine months after her diagnosis.

When people think about childhood cancer, they probably think about bald headed kids with drip stands. While this is true in many ways, children’s oncology wards can often be happy places, mainly as a result of the fabulous people who work there. Additionally, families unfortunate enough to spend time there want their kids’ lives to be as normal as possible. But what we want for our kids and reality oftentimes have little in common.

Hannah during proton
Hannah smiling during proton radiotherapy. Courtesy of Paul Barry

The real truth is about one in 285 kids will be diagnosed with cancer before the age of 20. Their breaking hearts will be hidden by faint smiles, endless medicine routines, and constant battles to stay clean. Important tasks, such as brushing their teeth, are endless fights.

Childhood cancer is long lonely stays in hospital rooms and desperate efforts to keep suffering children entertained and spirits high when they are isolated from everything familiar to them. It’s holding them down for procedures while they scream for you to stop. It’s kisses at the doors of surgery units and utter heartache as they are wheeled away. It’s long lonely walks down corridors when every second feels like an hour. It’s scars and tubes and wires and signing consent forms for the most difficult procedures. It’s middle of the night internet searches and desperate pleas for answers from doctors when you already know the answers are not there. Then, for more than one in five of us, it’s goodbyes and last kisses. Handholding while hour by hour those hands slowly get colder.

When you become a cancer family, you live the effects of long-term underfunding and lack of research for childhood cancer. Pediatric cancer receives less than 4 percent of federal cancer funding. Most of the drugs used to treat childhood cancer were developed decades ago and there haven't been many new ones since. Studies also show FDA-approved cancer drugs take about 6.5 years to go from the first adult trial to the first trial for kids. And the treatments that are available for kids are brutal and can leave long-lasting, debilitating side effects for those who survive, including lower IQ, personality changes, and infertility.

We need to do so much better for the kids fighting cancer today, or who will fight it tomorrow, than we were able to do for my beautiful little Hannah. We can start by asking government officials to allocate more resources to childhood cancer, raise funds, and contribute to organizations that support research and cancer families.

Hannah was simply incredible, and I’ll be forever proud of her. She overcame everything life threw her way and she did it all mostly with a smile on her face. She taught us so much about life and love and, most importantly, hope which was our lifeline during her illness and in the months since we last got to hold her. All of us can learn from kids like Hannah and fight as hard as they do to make childhood cancer a treatable—if not curable—disease.

If you want to read more about Hannah and our time with cancer, please visit www.withhopeinyourheart.com.