What’s the best news ever? Ask any family whose child has faced cancer and the answer is invariable: clean scans. That’s the news seven-year-old Sophia Thompson and her parents, Devin and Ingrid, received in December 2012.
Sophia was diagnosed with orbital rhabdomyosarcoma (RMS), a rare soft tissue sarcoma, on June 13, 2012. Sophia’s tumor was located behind her right eye. Treatment of orbital RMS typically combines surgery, chemotherapy, and radiation. But surgery couldn’t be performed without the loss of Sophia’s eye. The combination of chemotherapy and advanced proton beam radiation enabled her medical team to kill the cancer and preserve her eyesight.
The Thompsons were able to secure the most effective treatment for Sophia’s condition, including care at Seattle Children’s and proton therapy at ProCure Proton Therapy Center in Oklahoma City (SCCA Proton Therapy Center had not yet opened). Her experience from mid-June to December 2012 offered so many highs and lows that much of the time, says Devin, “it felt like drinking through a fire hose.” What often helped lighten their journey is Sophia’s irrepressible spunk—and her ability to find reasons to keep giggling.
The first day of summer break
In the summer of 2012, Sophia had just finished first grade at her Montessori school in Burien, Wash. Bright, observant, and constantly changing gears, she’s deep into a book one moment and doubled over with laughter the next. Sophia likes art and reading—especially Geronimo Stilton, Rainbow Magic, and American Girl books. And playing Wii and Playmobil Hospital. And telling funny stories.
Sophia’s parents first noticed a change in her eye during Sophia’s last week of school. “There was just something different about it,” says Ingrid. RMS is a rapidly growing cancer, and the tumor was pushing her eye out of position. The Thompsons were able to have Sophia seen by her pediatrician at 9 a.m. the following Monday. “It was the first day of my summer break,” says Sophia.
“By 10:15 Sophia was getting an MRI,” says Devin, “and by 10:30 we learned they’d found a two-centimeter mass behind her right eye.” A biopsy was performed two days later. “They knew right away,” says Devin. “There are two different types of RMS, and they had to biopsy it to know which. Once we got to [Seattle] Children’s they told us, ‘It’s embryonal RMS, and if you’re going to have RMS, this is the type to have.’” Adds Ingrid, “They call it the low-risk one—but it’s still very aggressive.”
A temporary setback
Immediately after the biopsy, the Thompsons made plans to have Sophia admitted to Seattle Children’s. She was an inpatient there for six days while she underwent tests, her treatment team advised the family on the best course of treatment—and she began chemotherapy. “I had an MRI and a CT and a PET scan,” says Sophia.
“In the course of the first scans that Monday,” describes Devin, “they noticed something in Sophia’s abdominal region. So the next day they did some more scans. What they ended up finding were some masses, actually quite a few, in the abdominal region and up into Sophia’s chest and spine.”
At that point, it was impossible to know whether those masses were also sarcomas. Finding them was a devastating piece of news to Sophia’s parents. The following day another surgery was performed, both to place Sophia’s line for chemotherapy, and to perform biopsies on these tumors. The three-hour surgery became a six-hour surgery, but the outcome brought good news. These growths were not sarcomas: They were benign. The Thompsons had once again gone from a terrible discovery to a more promising prognosis.
Soldiering through chemo
Two days later, Sophia started chemotherapy. She would ultimately be on chemo for 24 weeks. Every three weeks she was given three different drugs as a “cocktail” for one week; the other two weeks she was treated with just one. Sophia can tell you their names; she was sick from nausea virtually non-stop.
Both Ingrid and Devin work full-time, and they spent much of the summer taking turns away from work to be with Sophia. Sophia has a small frame, “and then she lost so much weight that she had to get a feeding tube in,” says Ingrid. For several months the family and their treatment team “tried every kind of nausea drug. She would take something every two or three hours and we switched formulas several times.”
Sophia soldiered on. “That was the hardest part, that we can put a man on the moon—but we can’t keep a kid from feeling absolutely miserable,” remarks Devin. “Sophia’s doctors and nurses did a remarkable job. They did everything they could.” Mid-way through chemotherapy, it was time to begin planning for the next treatment step: Radiation therapy.
Protons: The right kind of radiation therapy for Sophia
Like many families, the Thompsons had never heard of proton therapy before Sophia was diagnosed with RMS. Ingrid recalls sending out emails describing Sophia’s condition to her friends when she was first diagnosed. “One good friend is a nuclear physicist. He wrote back and said, ‘you have to ask about proton therapy, because it’s the right kind of therapy for her type of cancer.’ We brought it up in one of our first meetings with Dr. [Douglas] Hawkins at Seattle Children’s.”
In Sophia’s case, proton therapy was the best approach. Sophia’s pediatric radiation oncologist, Dr. Ralph Ermoian, advised that she be treated with proton therapy at the Oklahoma City ProCure Center. With her tumor so close to her right eye, protons posed less risk of radiation exposure to the eye, as well as other healthy tissue nearby. And proton therapy would also reduce the chance that Sophia would develop a new tumor later in life because of the radiation treatment. The Thompsons began making plans for a short-term move to Oklahoma City.
One plus for the Thompsons was that Devin’s company has a distribution center in Oklahoma City; Devin would be able to continue to work there full-time—while Ingrid took a leave of absence from her work managing the costume shop at the Seattle Opera. Before they left, the Thompsons’ friends held a fundraiser at a local restaurant to help defray their expenses. “They also set up a website on gofundme.com,” says Devin. All told, 160 people contributed to help the family be able to set up a temporary home in Oklahoma while Sophia received treatment. The Thompsons say they were blown away by this generosity. “That was the amazing part. Many of those who contributed—we don’t even know them,” says Ingrid.
Part of a family
They moved to Oklahoma City on October 8. Devin recounts how ProCure patient services manager Nycke White met them at the airport. He had been to Oklahoma City many times for work and “I know my way around,” he says. “But when she met us there it was more like—from that very first meeting you felt like you were part of a family.”
The Thompsons quickly fell into a comfortable routine in Oklahoma City. Ingrid says she valued the tutoring that ProCure made available to Sophia to keep up with her schoolwork. But just as important for her was the opportunity to meet other families whose children were also being treated at ProCure. “Every week, they offer many events, meals and social occasions, to bring families and patients together.”
Ingrid had originally been looking for a support group for Sophia back in Washington, “but I realized, what these kids really need is just .... to hang out together. And so I found the experience in Oklahoma was—for all of us—the best thing we could have done. There was less stress because I wasn’t working so I could concentrate on Sophia, and she got to be with other kids who were going through the same thing she was.”
You can’t laugh during proton treatment
Sophia’s treatment consisted of 28 sessions—five sessions a week. She says some of her favorite things about Oklahoma were the tornado warning sirens, playing Wii in the children’s waiting room with her friends, and sharing jokes with her treatment team. “When I think of Sophia, I see her laughing,” says Nycke White. “She has the cutest little giggle. My office is right off the lobby, and I always knew when the Thompsons were there because I could hear Sophia giggle.”
Sophia nicknamed Dwayne, one of her radiation therapists, “Patrick” after a character in Sponge Bob. “And it stuck,” she says with a grin. Another time, she snuck a whoopee cushion into her treatment session. “I was laughing my head off,” she remembers. “It took me a while to calm down because if I laugh during treatment my head will move. And you have to stay very still during treatment.”
With proton therapy, “there weren’t any major side effects,” says Ingrid. “Only with Sophia’s eye, there was some short-term redness and tenderness that appeared about halfway through the 28 treatments. And she lost her eyebrow and eyelashes.” Ingrid also points out that “Sophia had, I think, more energy when we were there. Spending time with her new friends there was definitely healing.”
The road ahead
The Thompsons returned home to Burien in early December. Following her clean scans at that time, Sophia will continue to go for scans every three months for the next year and a half—and move to a more elongated monitoring schedule after that. Her family’s quick response to her symptoms and the treatment she received have given her good odds of having RMS be a thing of the past. Sophia says she’d like to be either a meteorologist (“I’m crazy about wild weather!”) or a nurse when she grows up.
Many things have contributed to getting the Thompson family through their cancer fight, not least the powerful bond they share. Devin and Ingrid say they’re sharing their story in the hope of helping other families who are going through a similar experience. “We’ve been lucky enough to be the recipients of this technology and the help of great people,” says Devin. “This is one way of giving back.”