Patients Find Mentors, Friends at Proton Center

Veronica Padro and Mia Vaske giggle and whisper into each other’s ears, like typical 6-year-olds and best friends. But the circumstances that brought them together, miles from their respective homes, are anything but typical. The girls are patients at Mass General for Children, receiving proton radiation therapy at the Francis H. Burr Proton Therapy Center at Massachusetts General Hospital, one of seven such facilities in the country. Both girls were diagnosed with brain tumors and came to Boston for treatment following surgery.

Proton therapy allows radiation to be directed to a precise area, reducing potential damage to nearby, healthy tissues. This precision is especially important for pediatric patients, whose long-term growth and development depends on it.

Sharing Courage

In order to receive proton radiation, patients must lie extremely still inside the three-story tall proton therapy machine. Patients wear a fitted plastic mask to keep them still. The process is not painful, but can be frightening. Many young children receive anesthesia in order to undergo proton therapy, but pediatric nurse Rachel Bolton, RN, has cultivated a

program in which children who have undergone treatment without anesthesia show new patients how to do the same. The program is especially helpful for children ages 5 to 7, who are in between the typical range of those who need anesthesia and those who do not. “This age group is able to keep the need to be still in mind. They are generally able to concentrate and have self-control,” explains social worker Evelyn Malkin, MSW, LICSW. “To have this shared interest and medical experience as well as identifying with peers, adds to the success of this innovative practice.”

Timing must be right, however, where one child’s treatment overlaps with another, particularly as many patients arrive from out of state. Veronica, who hails from Florida, was scheduled to undergo treatment with anesthesia. But with the support of her family and care team, she watched Mia undergo treatment and then succeeded in her own “dry run.” She went without anesthesia for actual treatment. “Mia and Veronica walked hand-in-hand, giggling through the hallway to the treatment room, with me and Veronica’s parents behind her,” Rachel Bolton remembers. “Veronica did fabulous.”

Despite the enormous size of the proton machine, the atmosphere in the therapy room is joyful. Stuffed monkeys clad in Red Sox gear hang from the ceiling and music of the patient’s choice blares. Rachel Bolton accompanies the children,

bestowing kisses on them and holding their hands when family members leave the room. “Rachel is phenomenal—amazing,” says Mia’s mother, Pamela Vaske. “You can tell it’s not a job for her, it’s a calling.”

Depending on the diagnosis, most patients receive 30-40 treatments, Monday through Friday, over the course of two or three months. Treatment sessions usually last about 20 minutes. Without anesthesia, the child and family can leave immediately after treatment and enjoy outside interests. If undergoing treatment with sedation, the child must fast the night before, and will typically spend at least an extra hour in the Center before returning to regular activity. As the proton center can only accommodate a certain number of anesthesia cases per day, Bolton adds, “The blessing with this is that with taking a child off the anesthesia list, you’re able to get another child in who needs anesthesia.”

Enthusiastic Leader

The mentoring program found its stride last summer when 7-year-old Ario Nour arrived for treatment in August. Ario, who hails from the Boston area, underwent neurosurgery at MassGeneral Hospital for Children to remove a brain tumor just above his spinal cord. When he arrived subsequently for proton therapy, there was no child to mentor Ario, but Rachel Bolton suspected the proton therapy team would be

able to coach him through treatment without anesthesia. Ario’s mother, Zohreh Nour, remembers, “When Rachel asked him he was super excited.” She adds: “He always likes to lead and so he was very happy to be the teacher.” Ario went on to teach another boy, who was able to stay in school during treatment because hospital visits were shorter without anesthesia. Ario also taught Mia. “It makes the kids more comfortable and seeing them comfortable makes us sleep better at night,” Mia’s mother, Pamela Vaske, says. “I didn’t think Mia would be able to do it without being sedated and just watching Ario helped, they continue to amaze us. I don’t think we give them enough credit or know what they’re capable of doing.” Ario was recently able to apply his experience of completing proton therapy without anesthesia to a two-hour MRI session, his mother says, demonstrating that the courage her son shares with Veronica and Mia will continue to help them through future treatments.

Family-Centered Care in a World-Class Academic Medical Center

Before arriving at Mass General, all patients receive a video that explains the proton therapy procedure. Once they arrive, they meet with the care team and talk at length about the care plan. With help from the care team, Ario’s proton therapy treatments became opportunities for space travel, where the proton room was a space ship. At times numerous family members, from cousins to family friends, walked Ario into the room before treatment. “The extended family is affected by the child's illness,” social worker Evelyn Malkin says. Though Ario was fortunate to have family nearby, many patients travel hundreds of miles to Mass General, without their complete support system.

Mia’s mother, Pamela Vaske, was six months pregnant with her fourth child when she brought Mia to Boston this summer from their home in Iowa. “Your stomach drops with everything you find out,” she says, becoming emotional. “But you get out here, and I can honestly say we’re going to leave friends here. You meet people that you are going to stay in contact with for the rest of your life.” When Pamela Vaske arrived, the radiation oncology team set her up with an obstetrician. “You don’t have to worry about anything, it’s all lined up for you,” she says. Speaking to pediatric nurse Rachel Bolton and social worker Evelyn Malkin, Mrs. Vaske adds: “You guys make every day manageable.” Veronica’s mother, Leigh Padro, arrived from Florida, leaving her 4-year-old and 11-month-old children with their father.

“Walking in here, with everybody having open arms and saying we’re here to help, there’s not enough words to say thank you,” she says, adding, “Anything you need is right here.”

From MRI procedures to hematology-oncology specialists, patients have direct access to the rest of the MassGeneral Hospital for Children services while receiving treatment in the proton center. “We’re getting spoiled here. It’s just, everything is so smooth,” Mrs. Vaske says.

While receiving treatment, patients also have access to music and art therapy programs, holiday events, a playroom, and the center’s toy chests, from which patients choose a new toy for themselves and for each of their siblings every Friday. On a recent Friday before treatment, Mia and Veronica proudly shared their new acquisitions and skipped through the hallways back to the playroom. “They’ve now become fast friends. It makes a difference when you have other kids that you can hang around with,” Rachel Bolton says, echoing the comments of Mia and Veronica’s mothers.

Rachel Bolton is optimistic that more children will have the opportunity to be part of the mentoring program: “I think it will just keep flourishing if we can do it over a great period of time,” she says. Other staff who contributed to the success of this innovative approach: Katie Carpenter and Ed Kielty.

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