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Rhabdomyosarcoma Survivor

Garrett Clarke

  • Diagnosed with RMS, a rare soft-tissue sarcoma, soon after his sixth birthday
  • Successfully treated with chemotherapy and proton therapy over six months

Garrett Clarke is “easygoing and kindhearted and happy-go-lucky,” said his mom, Monica. You’d never know from his buoyancy and brightness that he’s battled a rare and rapidly growing soft-tissue cancer. Called a rhabdomyosarcoma (RMS), the tumor, attached to his tear gland, pushed out of his right eye. Garrett eventually named his tumor “Bob.” “Our goal,” said Monica, “was to kill Bob.”

The Clarke family’s cancer battle began two days before Garrett’s sixth birthday in 2013. “Garrett was unable to open his right eye all the way, so we took him to our regular eye doctor,” explained Garrett’s dad, Gregor. “He referred us to a pediatric specialist, who sent us straight to Seattle Children’s—Garrett had an MRI on his birthday, April 24th.” From there, it took three weeks and two biopsies at Children’s to confirm the RMS diagnosis.

Treatment of RMS typically combines surgery, chemotherapy, and radiation. But because the tumor was so close to Garrett’s eye, it was inoperable. 

Support from Every Direction

In recounting the story of Garrett’s treatment, Monica talked about how fortunate she and Gregor feel. Garrett’s treatment team was able to destroy his tumor in less than six months with chemotherapy and proton therapy.

Those months were exhausting, as Monica and Gregor juggled their jobs, along with managing Garrett’s treatment and trying to maintain a sense of normalcy for both Garrett and his twin sister, Addisyn. They settled into a routine, with Gregor getting up well before dawn. He needed to start his work in the engineering department at Boeing at 4 a.m. and be back at 8 to relieve their amazing babysitter and to get Addisyn to school. (Garrett missed school—and summer—during the six months he was getting treatment.) Monica’s employer was also very understanding about her need to maintain a flexible schedule, including having the ability to miss work to be there for Garrett.

“We had support from every direction,” Monica said, “and Garrett never complained.” She’s grateful for Garrett’s cancer treatment—and the level of caregiving he received—at Children’s and SCCA Proton Therapy, A ProCure Center. And grateful for the fact that Garrett, despite everything, kept bouncing back. She pointed out that many families contending with their child’s cancer face a far more difficult course of treatment—and a more difficult prognosis. “We were very fortunate to only have to go through 24 weekly chemo treatments,” she said. “And to get the news of Garrett’s clean scans on October 24th.”

Chemotherapy

Garrett began his treatment at Children’s under the care of Douglas S. Hawkins, MD

Garrett had a Port-a-Cath surgically inserted into his chest to allow a direct path for the chemotherapy “cocktail” to enter his bloodstream. The following day he began his first eight-hour infusion as an outpatient. “The first one went fairly well,” Monica recalled. “He really didn’t get that sick from it and bounced back quickly. But with the second, third, and fourth ‘cocktail’ treatments, he ended up having a reaction to the chemo. Each time he was transferred to the ER, and they made the call to admit him, which meant a minimum 48-hour inpatient stay.”

Garrett ultimately lost his hair, but never his spirit. “Garrett never once said he didn’t want to go, and he never once put up a fight,” said Monica. “Fortunately, he was never in any pain—and he was never frustrated. He just went with it. Gregor and I took on all the frustration ... sadness—more anger and worry, really—behind closed doors so that Garrett wouldn’t have to take it on. I guess it worked.” 

Proton Therapy

During five weeks in August and September, Garrett received proton therapy along with chemotherapy. Proton therapy, which targets radiation to the precise tumor location and spares healthy surrounding tissues and organs, was used to destroy any residual cancer cells that might remain. Compared to conventional radiation therapy, proton therapy gives kids better odds of avoiding many of the long-term side effects of radiation, explained Garrett’s radiation oncologist Ralph Ermoian, MD.

Monica and Gregor appreciated how Dr. Ermoian and the staff at SCCA Proton Therapy worked with Garrett to find a way for him to avoid anesthesia for his 25 daily proton treatments. Many six-year-olds need to be anesthetized because they can’t hold still for long enough to ensure the proton beam is spot on. But Garrett was able to show that he could. In addition, he could gaze in a direction that was helpful for targeting his tumor. “His brain had very limited exposure to the radiation,” said Monica.

“The staff at the SCCA proton center was impressed with him—and we are, too,” said Gregor. Monica added, “Both Dr. Ralph and Sue, Garrett’s nurse practitioner, said how Garrett came to be an inspiration to other patients coming at the same time for treatment each day. Garrett became friends with some of the adult patients. One older gentleman made Garrett a birdhouse. The radiation’s supposed to make you tired, but it didn’t affect him at all.”

Tears of Joy

Garrett now faces some side effects of his treatment. He used to have coarse brown hair; since his hair grew back after chemotherapy, it’s become soft wavy blonde. More seriously, the radiation to his tear gland caused dryness in his right eye. “We’ve been using eye drops about four times a day. This may resolve, or he may need them for the rest of his life. We don’t know yet,” Monica said. “But his vision in that eye is almost back to 20/20,” said Gregor.

Garrett will return to Children’s for periodic scans for five years, as is customary to check for signs that the cancer might have returned. Typically, if RMS doesn’t recur within that time frame, the prognosis for a complete remission is good.

For Monica, perhaps the biggest change of all in Garrett’s life was how much he matured in six months’ time. “The day that they told us he was cancer free, I was crying. And the next day, when he was getting his chemo port taken out, he looked up and said to me, ‘Yesterday, those were tears of joy, right mom?’ And I said, ‘Yes.’”

Ellie Sheldon

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