Cancer diagnosis and treatment is challenging for the most knowledgeable adult patient. For a child, the experience can be even more intimidating and frightening.
Often, it is a pediatric oncology nurse who provides care and comfort, and helps make the experience less scary for children and their families. The Francis H. Burr Proton Therapy Center at Massachusetts General Hospital in Boston, Massachusetts, USA, treats about 175 pediatric patients annually. At Mass General, nurses are trusted members of the integrated cancer care team. The Burr Proton Center treats a number of childhood cancers with protons, including medulloblastoma, ependymoma, astrocytoma, primitive neuroectodermal tumors (PNETs), rhabdomyosarcoma, chordoma and Ewing’s sarcoma.
Rachel Bolton, R.N., is one of four nurses on the proton therapy team, and the only one who works exclusively with pediatric patients. A professional with more than 30 years of pediatric experience, 20 of them in pediatric oncology, Bolton confronts the challenges and embraces the rewards of working with young cancer patients every day.
Prior to treatment, Bolton and the team carefully prepare for the child’s arrival, addressing the particular needs of each family. When family members arrive, Bolton meets with them, either during the initial consult with the child’s physician or on her own. “I want to see how the family is dealing with the diagnosis and talk with the child, if possible, so I can ascertain how well he or she understands what is happening,” says Bolton. She often puts a play mat on the floor and sits with the child so they can interact at eye level. “My goal is to make the children comfortable by letting them get to know me. If the children can feel safe with me, it may help the parents feel comfortable in this very difficult situation.” In addition to a pediatric oncologist, pediatric radiation oncologist and oncology nurse, other care team members include radiation therapists, a physicist, immobilization technician, child life specialist, social worker, psychiatrist, and music and art therapists. To put parents at ease, personal care services such as massage therapy are available.
Getting down to treatment
The first thing children see in the treatment room is a plush turtle that dances to the disco song, “Funky Town.” Placed on the treatment table, the child presses a button on the turtle’s foot to make it dance. “I assure parents that within a week and a half, their child will be asking to ‘go see the dancing turtle,’” says Bolton. “Many parents do not believe me when I say this and are pleasantly surprised when this actually occurs! This shows the child has made that big step toward feeling comfortable in this setting.” Children who need anesthesia for the delivery of their treatment will have their central venous catheter accessed each week. This is often frightening and uncomfortable for the child. However, with the skills of the child life specialist who works with Bolton every Monday, the children can be distracted by her presence and her box of toys. Along with the nurse, the parents accompany the child to the treatment room. The child is held by the parents while the anesthetic is delivered, then they return to the waiting room while the treatment is given and the child recovers. Bolton accompanies those children not receiving anesthesia to the treatment room the first few days to provide support and explain what is happening during treatment delivery. At that time, the children meet the radiation therapist who will treat them with protons and who explains what will happen and what sounds they might hear. “Establishing a routine is important, so the child knows what to expect. Kids are more comfortable when they know what is going to happen.” Bolton says.
Advantages of protons
During her six years at the Burr Center, Bolton has become acutely aware of the benefits of proton therapy, especially for kids with cancer. Cognitive deficits and hormonal changes are only two examples of long-term side effects that could arise for children receiving conventional X-ray radiotherapy, she says. It is important to remember that the side effects are site-specific. “If you have a child receiving cranio-spinal irradiation, for example, you are radiating the whole spine. With protons, you are protecting the ovaries, the stomach, the lungs,” says Bolton. “There are so many benefits from
protons for these kids later in life.”
Working as a team
The Burr pediatric team meets weekly to discuss each patient — those currently receiving treatment and those awaiting treatment. It is the time to address what other medical, physical and psychological needs the child may have in order to prepare for his or her arrival. This advance preparation is crucial in helping a family feel comfortable and confident with the new care team that will be responsible for their child’s care. “We want to get everyone’s ideas,” says Bolton. “We all come to the table with different strengths and from different backgrounds. And it’s all valuable.” Bolton sees her work not as a job, but as a calling. “I love these kids — they teach me all the time,” says Bolton, the mother of three grown children. “When people say, ‘How are your kids?’ I say, ‘You mean my own or the ones I take care of?’ For me, they’re one and the same.”