Nursing & Patient Care
Pediatric Oncology
Supporting families every step of the way
Amy Piselli, RN, CPON, lends a hand to Adams Fenelon.
When a child gets cancer, the child's family is changed forever. Overnight, the family's focus shifts from juggling the often joyful chaos of work, school, and play schedules to absorbing the reality of having cancer in its midst. In time, the family must fall into a new rhythm — one that allows room for frequent visits to the hospital or clinic and that is characterized by a new kind of vigilance.
Staff members in Pediatric Oncology are very familiar with the changes that a cancer diagnosis demands of families, and have developed a multidisciplinary, patient- and family-centered approach to care that is a model for pediatric oncology centers nationwide. It is an approach that effectively bridges the inpatient and ambulatory settings and blends highly skilled expertise with large measures of support, guidance, and reassurance.
The Pediatric Oncology program is built on a longstanding partnership between Dana-Farber and Children's Hospital Boston (CHB). Inpatient care is provided at CHB, while ambulatory care is provided through Dana-Farber's Jimmy Fund Clinic. Children receiving treatment move regularly across the two institutions. Over time, systems have been developed and refined so that, today, boundaries between the institutions are often difficult to detect. In addition to sharing patients and treatment protocols, the two institutions also share a philosophy about how to meet the needs of oncology patients and their families.
Sharon and Peter Gallagher know too well the heartache and fear associated with having a child diagnosed with cancer. The day their almost-three-year-old daughter, Shannon, was diagnosed with acute lymphoblastic leukemia (ALL) is still vivid in their minds. However, after experiencing almost two years of treatment at Dana-Farber and CHB, the Gallaghers can also describe how Shannon's providers helped her family face their fears and learn to adapt to the stresses and routines of her treatment regimen.
"Shannon was diagnosed on May 31, 2002, at 1:30 in the afternoon," recalls Sharon Gallagher. "She had been bruising in strange places and had been tired for a couple of weeks. Finally, she developed a fever, so we brought her in to see our pediatrician. He ran a blood test and then told us we had to take Shannon straight to the Children's Hospital emergency room." Once at the emergency room, Shannon was quickly admitted to the hospital and spent the next 30 days receiving induction therapy for ALL.
In ALL, immature white blood cells (called "blasts") are present in disproportionate numbers and crowd out healthy cells. During an initial hospitalization, ALL patients receive chemotherapy to wipe out the immature cells, allowing healthy cells to return to normal levels. Before normal levels are achieved, however, patients are susceptible to infection and require close monitoring. If all goes well, by the end of a month the ALL is in remission. At this point, patients can be discharged to receive two years of outpatient chemotherapy.
Supporting families every step of the way
Clinicians in Pediatric Oncology begin working on day one to address the unique needs of each patient and family. For Shannon Gallagher, that day was spent in the inpatient oncology unit at CHB. Pam Dockx, RN, CPON, Shannon's primary nurse, worked nights — 7 p.m. to 7 a.m. — while Shannon was in the hospital.
Nighttime, Dockx notes, frequently offers her a unique chance to speak with parents. "Once their child goes to sleep, the parents have a lot more time to reflect on what they've been told that day. Although many others on staff have gone home, nurses are still present and use the time to answer questions the parents might have and to offer support," says Dockx.
During a patient's initial hospitalization for ALL, notes Dockx, the inpatient care team also begins to help families plan for their child's care after discharge. "We know that the family is the child's first line of defense, and we try to help them learn what to expect so that they can handle whatever comes up," she explains.
A team approach to care
Before Shannon was discharged from the hospital, her family had a tour of the Jimmy Fund Clinic and met the team who would care for them over the next two years. Shannon's team includes Louis Silverman, MD, Arlene ("Andy") Androkites, RN, PNP, and Annie Beauchemin, RN, CPON. However, the team extends beyond Shannon's primary providers and also includes clinic facilitators and clinic assistants, pharmacists, social workers, child life specialists, and the other nurses who have grown to know Shannon and her family over the months of treatment. "We feel Shannon is cared for by everyone on the staff," says Sharon Gallagher.
Shannon's treatment protocol requires her to come to the clinic every one to three weeks for 24 months to receive an injection or intravenous dose of chemotherapy. Additional doses are administered at home by her mother, daily, and by a visiting nurse, weekly. At the start of each clinic visit, Shannon checks in with a clinic facilitator. Beauchemin draws a blood sample from her indwelling venous catheter, and a clinic assistant takes her vital signs. While waiting for the results of her blood tests, Shannon and her mother spend time in the clinic waiting area and playroom.
Clinicians in the pediatric program know that waiting can be difficult and have developed a multifaceted activities program designed to promote play and allay children's fears. With the support of dedicated volunteers, Lisa Scherber, patient activities coordinator, offers children a chance to join in on crafts, games, and stories. "Lisa and all the volunteers are beyond wonderful," says Gallagher.
"They give you what you need when you need it — a smile, a hug, or time alone." Since November of 2003, a redesigned area has made waiting a bit easier. The new space includes a large fish tank, a play structure, and a special alcove for teens.
Clinic assistant Tania Hoxter (right) and patient Ella Raposo-Sacks
Once the results of blood tests are available, patients see their primary providers. During Shannon's visits, she meets with Androkites, who examines her, reviews her laboratory values, and assesses how she is tolerating treatment. Androkites then prescribes the doses of chemotherapy to be administered that day at the clinic and the doses to be given at home during the next two weeks.
Beauchemin then gives Shannon two chemotherapy injections, a task made easier by her years of experience in calming frightened children. "I always let the child know what to expect and never lie," says Beauchemin. "At the same time, I often try to distract the child and keep things moving along." For Shannon, the injections initially caused many tears. But over time, she has grown to know and trus Beauchemin so that now she and Beauchemin calmly chat while the injection is administered.
As treatment has progressed, Shannon's mother has brought many of her questions and worries to Beauchemin and Androkites. "We encourage families to speak to us regarding any of their concerns," notes Androkites. Adds Sharon Gallagher, "Annie and Andy are a team. They communicate with each other about everything. Every question or emotion that I've had has always been met with acknowledgement, validation, and empathy."
Helping families build on strengths
Like all families faced with serious illness, Sharon and Peter Gallagher have had to consider how Shannon's cancer would affect their lives. Pam Hogen, PsyD, is one of several clinicians in Pediatric Psychosocial Services who work with the patients and families. "We are available to families from the beginning, and we tailor our support to meet the family's particular needs," notes Hogen. Often, families need support most around stress points such as when the child is diagnosed, when the treatment changes, or when the child is experiencing a developmental hurdle. "We try to capitalize on each family's strengths and help them identify strategies to cope with their vulnerabilities," says Hogen.
The Gallaghers have worked to maintain a sense of normalcy throughout Shannon's treatment. With two other young children at home, they have focused on keeping life as routine as possible for them as well as for Shannon. Sharon Gallagher agrees that what works for one family doesn't necessarily work for another, adding, "All along, the staff have given us support, but also the space to find what works for our own family."
As the end of treatment nears, the Gallaghers have begun to contemplate the time when visits to Dana-Farber will become less frequent. "As Shannon's protocol has progressed," notes Sharon Gallagher, "there have been times when we've felt concern for the future, but we put these concerns in a corner of our minds and rely on the fact that Shannon is getting the best care possible. We will always be thankful for that."
Our thanks to Sharon and Peter Gallagher for their help in developing this story.
