Ewing Sarcoma: Sean’s Story
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In Sean Carey’s dreams, he’s standing on the Beaver Stadium football field at Penn State, with 106,000 fans screaming for him to make the game-winning field goal for the Nittany Lions.
He measures his steps, approaches the ball, and with his right leg planted firmly in the grass holding all his weight, his left leg swings like a powerful pendulum as it makes contact. The ball sails through the air . . .
That dream was put on hold, along with all physical activity, as Sean fought Ewing sarcoma and booted it into remission.
It all started in the winter of 2014-15, when Sean began having pain in his hip. At first his parents thought it was growing pains since he’d sprouted 3 inches over the prior six months. Or, as a football and street hockey player, they attributed it to the typical hits he’d taken.
But when it wasn’t any better by mid-February, a trip to the doctor was in order. An X-ray did not show any obvious problems, so his doctor gave a preliminary diagnosis of bursitis and recommended physical therapy, with the caveat to come back if the pain didn’t resolve.
In fact, it got worse. Sean went to the Penn State’s Blue and White spring game in April, and by the time he got home to Somers Point, NJ, he was in a lot of pain and had a hard time walking. An MRI showed a lesion in his right pelvic bone with a mass extending into the surrounding tissues. His local doctor referred him to the Bone and Soft Tissue Tumor Program at Children’s Hospital of Philadelphia (CHOP).
The program brings together oncologists, orthopaedic surgeons, radiologists and pathologists with expertise in benign and cancerous tumors to diagnose and treat kids like Sean.
Anne Marie Cahill, MD, Chief of CHOP’s Division of Interventional Radiology, and her team excel at minimally invasive needle biopsy and hand off the specimen to experienced musculoskeletal pathologists, who can make a diagnosis from a tiny sliver of tissue. Sean had a needle biopsy, a procedure where the doctor inserts a small needle into the lesion to withdraw a small sample of the mass in his hip. Pathology found it was Ewing sarcoma, a rare solid tumor.
Sean faced a choice for his treatment. After an initial seven rounds of chemotherapy, he could either have surgery to remove the tumor-riddled bone and surrounding tissue, or he could undergo radiation therapy to kill off tumor that way.
The family met with the CHOP Radiation Oncology expert, who explained radiation would allow Sean to maintain full function of his hip — critical for a kicker. But it carried secondary risks of the treatment itself and a slightly higher risk of the cancer returning compared to surgery. “With Ewing sarcoma, if you don’t get it all, it comes back fiercer,” says his mother Jennifer. “While radiation is less invasive, it scared me that the cancer could return.”
As for surgery: “Dr. Weber showed us on a pelvis model how much of his hip she would need to take and what would be left. It was scary,” Jennifer says. If you think of the butterfly shape of a pelvis, all of the top right “wing” and all of the surrounding muscles had to be removed to eradicate the cancer. “She told us the cancer would be gone, but he probably wouldn’t walk normally again and that kicking would be very difficult.”
Sean contemplated his options, then told them: “I know I may never kick again, but I want the surgery. I don’t want to live the rest of my life worrying the cancer will come back.”
Sean’s father, Glenn, says, “We were proud of him. That was a tough call for a 14-year-old with dreams of being a college place kicker.”
To prepare for the surgery, Dr. Weber ordered special images — 3D reconstructions of a pelvic CT scan and an MRI — and reviewed them with CHOP’s musculoskeletal radiology experts to determine where to make the precise surgical cuts to balance complete removal of the tumor with maintaining of as much postoperative function as possible.
The surgery lasted five hours, and a nurse came several times to the waiting room to update Jen, Glenn and his sister Sabrina. Dr. Weber sent a series of biopsies to the pathology lab during the operation to make sure she cut out all of the sarcoma, from both the bone and the surrounding muscle. The final pathology results revealed 100 percent necrosis (death) of the tumor and negative (clear) surgical margins. Success!
Then Naomi Balamuth, MD, stepped in to oversee the post-op chemotherapy, another seven rounds.
Initially, Sean was so weak he used a wheelchair. He graduated to crutches, then to walking with a bad limp. It took 2 1/2 months after surgery, with countless hours spent in physical therapy, to get back on his feet.
“With all the muscles Dr. Weber needed to take, he had to retrain the remaining muscles to take over those functions,” says Glenn.
“It was tough, especially not being able to walk at first,” a normally active Sean admits. “I would slowly get better, then make a jump in progress. Then slowly get better, then another jump. It was about a year after my diagnosis when I started kicking again.”
An unrelated setback — he broke his toe jumping into a pool — knocked him out for the start of the 2016 season, which might have been a blessing in disguise, says Jen. “It gave him another year to get stronger.”
For the 2017 football season, Sean, a junior, was the starting kicker for Mainland Regional High School. With the team’s struggling season, he didn’t get many opportunities, but he did kick off, and hit his one field goal attempt, a 20-yarder, and 9 of 11 PATs. In practice he boomed field goals as long as 53 yards, however, showing he’s got some power.
He hasn’t given up on his dream of kicking for Penn State, but he’s open to other colleges, too, most in the Mid-Atlantic Region. “We’ll see what happens,” he says. “I’ve learned that plans change and you’ve got to work through it.”
Sean and his parents credit CHOP’s Bone and Soft Tissue Tumor Program for the fact that he can even entertain the idea of kicking at the collegiate level. Two years post-treatment, he’s cancer-free and strong.
“From start to finish, CHOP took care of everything, before you even think of it,” says Jen. “They took care of us medically and emotionally. Dr. Balamuth was terrific about explaining what to expect. Dr. Weber was so encouraging, she gave Sean — all of us — hope.”