Peggy Townsend, MSN, RN, CPON, will never forget treating her first cancer patient--a four-old girl who had just been diagnosed with leukemia.
“The family was very close, and of course this diagnosis devastated them,” she recalls. “I had to be the one to be strong, and they depended on me and trusted me.”
Today the former patient is a healthy 17-year-old college student. The teenager and her family still keep in touch with Townsend to say thank you.
Every nurse who specializes in pediatric oncology inevitably is asked: How can you do it? How can you face every day the ordeal of seeing children suffering with cancer? But for these nurses nothing is more rewarding than making a difference in the lives of kids and their families at such a critical time.
“I work here because I see it as helping children overcome some of the worst diseases, and I help parents cope with one of the worst nightmares of their lives,” says Adeline Fredricks, BSN, RN, a pediatric oncology nurse at Children’s Memorial Hospital in Chicago.
Thanks to the tremendous medical advances that have been made in the war against cancer in recent years, today’s pediatric cancer nurses have hope on their side.
“It’s not always a sad story,” says Rita Secola, MSN, RN, CPON, president of the Association of Pediatric Oncology Nurses (APON). “Today we cure probably greater than 60% of children with cancer.” In fact, the cure rate for acute lymphoblastic leukemia, the most common form of cancer in children, now approaches 90%.
“I still get Christmas cards from children I took care of 15 years ago,” adds Secola, who is clinical manager of the inpatient center at Children’s Hospital of Los Angeles.
Melissa Silva, CPNP, a pediatric nurse practitioner at Children’s National Medical Center in Washington, D.C., has a hard time choosing one example of a patient whose recovery inspired her, because there are so many. Pictures of children crowd her desk. “There are so many of them who were at death’s door, and yet somehow, someway, through hope and prayer, they got through it,” she says. “To see them now walk into our clinic is very rewarding.”
Pediatric oncology nurses work in a variety of capacities. Clinical nurses provide care at the bedside, deliver blood products, administer chemotherapy and other procedures and provide patient education to kids with cancer and their families. Case manager nurses work with a physician team to coordinate and monitor care throughout the treatment process. Some case management nurses work for insurance companies.
Other nurses in pediatric oncology work as clinical educators, providing staff training and making sure newly hired nurses are following treatment protocols. The specialty also needs research nurses who can investigate factors affecting cancer outcomes and conduct clinical trials so that new treatments for childhood cancers can be developed. And there are opportunities to move up into administrative and managerial positions, such as clinical managers.
As a pediatric nurse practitioner, Silva coordinates the care of patients with cancer, especially those with acute lymphoblastic leukemia. She also works on a pediatric palliative care team, a multidisciplinary group that makes recommendations for pain and symptom management and consults on end-of-life issues.
Silva says she always wanted to be a nurse for as long she can remember. She got interested in working with young cancer patients after watching a St. Jude Children’s Research Hospital television special. “That sealed it for me,” she remembers. “It was seeing the courage these children had. Despite having these awful illnesses, these kids were still smiling.”
One of the greatest benefits of working in pediatric oncology is the opportunity to really get to know patients and their families, says Ada Santa Cruz, RN, who decided to pursue a career in cancer nursing after both of her grandmothers were diagnosed with the disease. As a clinical nurse II at Children’s Hospital of Los Angeles, Santa Cruz administers chemotherapy, provides care to alleviate pain, and educates and advocates for patients and families. Her work also entails performing countless small acts of kindness.
“Sometimes it means bringing a parent a box of tissues or bringing a patient a Nintendo game,” she explains.
Santa Cruz, too, finds these young cancer patients inspiring. “You see this different side of life,” she says. “These children are like lions. They have an enormous amount of strength. Despite having chemotherapy and getting stuck with needles, within in an hour they want to run and play. When we have arts and crafts, some kids will look forward to that all morning.”
Another advantage of a career in pediatric oncology is the opportunity to work on the cutting edge, says Secola. In cancer treatment, new drugs are under development all the time. Nurses working in pediatric oncology get to administer the newest treatments available and see for themselves the rewarding results when a child’s condition dramatically improves. “It’s not the same old nursing,” she emphasizes.
As with many other specialty areas of nursing that have been severely affected by the RN shortage, the need for pediatric oncology nurses is acute. Plus, this specialty urgently needs more minority nurses, who play a vital role in helping hospitals meet the needs of children and families from diverse cultures. After all, the last thing the parents of a critically ill child need at this difficult time in their lives is having to deal with linguistic barriers or culturally insensitive care.
“Patients come to [our medical center] from all over the world,” says Silva, who is of Portuguese/Cape Verdean descent. “They often view death and dying differently than we Americans do. We have to respect their families’ religious beliefs and practices.”
Santa Cruz, for instance, recalls a family from Jordan who did not want the staff at her hospital to touch the body after their child had died. Nurses worked closely with the family to get permission to do what they needed to do.
Having a racially and ethnically diverse pediatric oncology nursing staff can also help children and families of color feel more comfortable in an unfamiliar, and perhaps even frightening, hospital setting. Fredricks, who came to the United States from Nigeria when she was 14, has treated some patients at Children’s Memorial who were from Nigeria. When the parents saw her and found that she was able to communicate in their native language, Ibo, “they felt at home,” she says.
Santa Cruz feels that her ability to speak Spanish creates a cultural bond with Spanish-speaking families. But just being able to speak the language isn’t enough, she cautions. Everything must be translated properly to the parents’ level of education. Misunderstandings can develop if medical terms are translated but not explained. For example, a parent might think a “positive” test result is a good thing, when just the opposite is true.
While getting to see children conquer cancer and grow up to lead healthy lives is the most rewarding part of a career in pediatric oncology nursing, there’s no denying that there are also tough times. Sadly, the reality is that not every child is able to win his or her battle with the disease.
“The most challenging part is when children who have gone through treatment relapse and we lose them,” says Townsend, who is African American.
Silva says occasionally months will go by without any deaths, and then suddenly three or four children will die within the same month. When that happens, she adds, “we all grieve.”
When she’s feeling down, Silva makes a point to drop by the long-term survivors’ clinic, where she can see patients who have been free of cancer for five to 20 years or more. “Some are married now,” she says. “Some who were babies when we cared for them are now in college. That makes me feel better.”
She also gains strength from the camaraderie she shares with other nurse practitioners at her facility. “We have a wonderful group. If we’re having a bad day, I know I can come back here and vent to them.”
At Children’s Hospital of Los Angeles, says Secola, nurses are taught how to cope with these emotional challenges as part of their orientation. They are instructed to develop a plan for how they will take care of themselves and how they will maintain professional boundaries. The nurses get a lot of support from one another, and the staff conducts debriefing sessions after particularly tough cases. Hospital chaplains also provide support, and counseling is available through the employee assistance program if someone needs extra help.
Nurses have to set boundaries for themselves, so they don’t get overinvolved with patients and their families or take on more than they are capable of handling, Secola explains.
Santa Cruz, who has worked in her position for only two years, says setting boundaries is more challenging for new pediatric oncology nurses like herself than it is for veterans. “I’m still learning not to become so attached to patients. I need to be emotionally in tune with what I can take on.”
Fortunately, she adds, her strong religious faith helps her maintain balance in her life. Hobbies, such as running, also help. She recently completed a marathon.
As they become more experienced, nurses eventually learn to deal with the hard losses, says Townsend. “But it never becomes easy. If nurses get to the point where they don’t have to cry, those are the people I worry about.”
There’s no getting around the pain of seeing a young patient die. As Fredricks describes it: “Somewhere in your heart, you know this child is not going to make it. You go home and you cry yourself to sleep. Sometimes you come back [the next day] and the child is gone. But you have to move on. You have to be able to let go and move on so you can help other kids.”
One thing that helps pediatric oncology nurses cope when a child dies is knowing they did their best. Often they helped grant patients’ last wishes to spend their final days at home with family.
Registered nurses can work in pediatric oncology right out of nursing school. The once-common belief that nurses should get general experience first before specializing no longer holds true today, Secola says. Hospitals are more than willing to offer specialized training--e.g., in chemotherapy--for new nurses.
Working with pediatric cancer patients isn’t for everybody. “You have to be strong. You have to be compassionate. You have to be caring,” says Fredricks.
Because of the rapidly evolving scientific advances that are transforming cancer care in the 21st century, pediatric oncology nurses must also be flexible. This is a career that requires a lifetime of learning. If you’re a nurse who’s looking for something challenging with constant opportunities for growth, then this specialty is right for you, says Secola. “It’s not [the kind of nursing] where you learn a set of tasks and then it’s always the same.”
Townsend agrees. As education manager for the department of patient care services at Children’s Hospital of Los Angeles, she is responsible for RN staff development. She helps with the eight-day orientations for new nurses and provides support at the bedside to make sure the nurses are performing procedures correctly. “It’s constant learning,” she says. “Things change really quickly and you have to keep up with the standards and practices.”
While the daily pace in pediatric oncology is not as fast as in an emergency room or ICU, nurses must still stay on their toes because patients’ conditions are volatile.
“It takes a lot of advocating and picking up on signs and symptoms,” Santa Cruz explains. “You’re going to be stretched and it’s going to require a lot of patience and sensitivity. You don’t just look at the machines. You look at the patient. You look at the parent.”
Above all, compassion is at the heart of this work. “You may think you’re having a bad day, but you’re not the parent in the room who has just been told their child has cancer,” says Townsend. “You have to turn off [any personal stuff that’s] going on with you.”
And that’s not always easy. But the long-term impact pediatric oncology nurses have on the lives of children and families makes the challenges all worthwhile. As Townsend puts it, “I probably would do this for free if I could.”