How do you do it? How do you go through the highs and lows?
Rebecca Swanson gets asked questions like that a lot. She is a pediatric nurse practitioner at Nebraska Medicine, where she’s worked in the pediatric oncology unit for the past seven years. It’s a profession that brings her into close and frequent contact with families when they are at their most vulnerable.
“You essentially know everything about those kids and their families because you’re with them an incredible amount of time,” she said.
September is Childhood Cancer Awareness Month. According to the Children’s Cancer Research Fund, more than 15,000 children are diagnosed with cancer each year, and more than 2,000 under the age of 18 die.
Nurses like Swanson, and similar roles like child life specialists, who educate children and their families about the treatment they will receive and try to help minimize stress and anxiety, are on the front lines of that struggle with families.
Swanson started as a floor nurse in 2007 when Nebraska Medicine had a combined adult/pediatric oncology unit, and as she’s grown professionally, pediatrics drew her in because she enjoyed forming relationships with children and admired their natural resiliency.
“A lot of times they don’t understand or even comprehend what they’re up against and they know they have cancer and they know what they have to do and they just do it, and there’s some beauty in that,” she said.
Even though they may not fully understand what they’re up against, it’s important for children to be familiar with the treatment they receive, and that’s where child life specialists like Debbie Wagers come in.
CLPs have backgrounds in childhood development, Wagers said, and augment that knowledge with specific medical coursework to familiarize themselves with the medical environment. She educates the child using play-based, age-appropriate teaching methods to help them understand why the doctors are having them undergo difficult treatments.
They also provide play opportunities to help remind them they are still kids even though they face a difficult situation.
“It gives them a place to be able to express and cope with things,” Wagers said. “It’s a distraction for them because they’re having things done to them that are unpleasant.”
Discomfort and stress and not confined to the hospital. A child may miss long stretches of school and feel disconnected from friends and classmates.
Wagers also goes to classrooms and teaches a patient’s classmates about things like what cancer is, why their friend looks differently or has different rules than the rest of the students — why they can wear a hat or have a snack in class, for example.
Parents, Wagers and Swanson said, present some of the biggest challenges. The parents want to protect their children and fix their problems, but cancer doesn’t allow them to do that.
They often have to travel, miss work or quit work entirely, which can lead to financial stress, and life at home is changed because their child may have a compromised immune system because of their cancer treatment.
“We want to fix everything and protect our children and you can’t protect them from this,” Wagers said. “They’re having things done that are scary, sometimes they’re painful and you just want to fix it and there isn’t anything you can do so you just have that overwhelming feeling of helplessness.”
Emotional and personal connections are formed over the course of a patient’s treatment. Swanson sees about 50 children a year, she said, and going through the highs and lows can be difficult but worth it.
Each nurse and CLP decides what is an appropriate level of attachment based on what they feel they can handle emotionally and what the patient needs, but Wagers and Swanson said it was important to form bonds.
“If I’m not loving those kids like they’re my own and treating them like they were family members then I don’t think that I’m doing my job,” Wagers said.
Swanson called it “the art of caring.”
“You can’t truly care for a patient holistically, their whole being, without forming some of those connections,” she said.
Due to advancements is research and treatment, child patients diagnosed with some types of cancer have survival rates as high as 90%, according to St. Baldrick’s Foundation.
So even though there are lows and not every patient survives, Swanson said it is important to celebrate birthdays and other milestones.
“We by far have more happy days than we have sad days,” Swanson said.
Even so, both noted that childhood cancer is underfunded and under-researched. Older people are diagnosed with cancer more frequently than younger people, and the funding and research emphasis reflect that.
But Wagers argued that the amount of life lost if, say, a 65-year-old is diagnosed and dies may be a handful of years, but a childhood cancer patient could lose decades.
“We have to do a better job,” she said.