Grace Suomi: Ewing's Sarcoma No Match for Five-Year-Old Survivor


Brain Cancer Survivor Grace Suomi
Clare and Grace Suomi

Grace Suomi was five and had just finished the year at Curtis School in Los Angeles when she started exhibiting strange symptoms. They started with terrible nightmares that caused the child to thrash and scream in her sleep.

Her mother, Clare Suomi, attributed the bad dreams to anxiety, as Grace was scheduled to start camp soon. Then her right jaw started hurting, her appetite disappeared and her personality seemed somehow off. Since the family was headed out on a three-week vacation the following week, Suomi decided Grace needed to see her doctor.

The pediatrician diagnosed a sinus infection and during a physical exam found swelling on the right side of Grace’s face above her cheek bone. The swelling wasn’t painful to the touch, but the doctor recommended that Suomi take Grace to an ear, nose and throat specialist, who found nothing that merited postponing the family vacation.

Once the family settled into their northern Wisconsin vacation, Grace’s pain spiked and her nightmares got worse. She couldn’t chew on the right side of her mouth. So the family sought out a doctor in a nearby town, who ordered a CT scan.

“We were in the waiting room and the doctor walked in and said we needed to go home immediately, that she had found a tumor in Grace’s head,” Suomi said. “She sure sucked all the air out of the room with that announcement.”

Stunned, Suomi called her husband, Marvin, who was waiting for a report.

“I was hysterical,” she said. “You don’t expect this, that your child may have cancer.”

The Suomis started making phone calls to doctors in Los Angeles, packed up their things and climbed into their rental car to collect their son from a nearby camp.

They flew home to Beverly Hills that day and the next morning Grace was admitted to a Los Angeles area hospital, where doctors ordered an MRI that confirmed the tumor. The Suomis still didn’t know if their child had cancer or not. The doctors needed to biopsy the tumor, but to do that they had to do surgery to remove the growth.

“It was a really bad time. We were in such shock with all of this and the hospital’s pediatric surgeon was on vacation for two weeks,” Suomi said. “They said wait until he comes back and we said no way.”

The Suomis went to another Los Angeles area hospital, where the surgery was performed on July 7, 2010. The surgeon said he’d be down from the operating room in two hours to give them the biopsy results. The two hours stretched to six.

“We were so anxious. At that point we assumed he had taken out the tumor and everything was good,” Suomi said.

It wasn’t.

The doctor escorted the Suomis to a private room, where he told them the tumor was malignant and that Grace needed to start chemotherapy immediately. The news, Suomi said, sent them further into shock. Grace was facing a year of treatment, and she couldn’t go to school because her lowered blood counts would put her at risk for infection.

The Suomis decided to move Grace’s care to UCLA after they were referred to Dr. Noah Federman, a pediatric oncologist and a researcher with UCLA’s Jonsson Comprehensive Cancer Center. On July 13, 2010, they sat down with Federman to discuss Grace’s care.

“He spent three hours talking to us and he was nothing short of amazing,” Suomi said. “It made us feel confident that he was confident in what he planned to do with Grace.”

Grace was admitted to UCLA the next day, and her year-long journey to fight her Ewing’s sarcoma began. It was a journey with more than a few bumps in the road and dozens of hospitalizations.
Doctors wanted Grace to undergo six weeks of radiation. Because the location of the radiation sometimes affects a patient’s ability to eat, a feeding tube was inserted into Grace’s stomach, another source of multiple hospitalizations down the road when the tube became infected.

They tested Grace’s bone marrow to determine if the cancer had spread, which would make her cancer much more challenging to treat. Finally, some good news—the cancer remained localized in her skull.

Chemotherapy began on July 17, 2010, in the hospital. After the chemo was finished within three to five days, Grace and her mother, who never left her side, got to go home for a week. Then it was back to the hospital for another round. Grace was having trouble tolerating the therapy and suffered severe vomiting and diarrhea. That resulted in further hospitalizations while doctors tried to determine the cause of her severe reaction to treatment.

Federman finally determined that Grace had picked up a parasite somewhere, which needed to be addressed with additional medications. Infectious disease specialists conferred with Federman to determine a course of treatment that would continue fighting the cancer and attack the parasite without putting Grace at too much increased risk.

“She was so sick and in pain and I felt helpless,” Suomi said. “I had to watch all these doctors try to take care of my child, which is my job, and there was nothing I could do.”

Grace was in and out of the hospital, which meant her mother was, too, for nearly all of July, August and September. The child was scheduled to start radiation while still on her chemotherapy, but Federman decided it might be too much because Grace was still being treated for the parasite.

Chemotherapy was stopped and radiation began, a traumatic procedure that called for Grace to be locked to the table with her face in a tight fitting mask to keep her from moving. But the child handled it very well, her mother said, and didn’t need to be sedated.

Postponing chemotherapy did the trick, Suomi said. By the time radiation was ending, tests for the parasite came up negative. Chemo could resume.

November 2010 came and with it, Grace’s sixth birthday. The family, which includes Jacob, 9, and Joshua, 12, did it up big. They had another reason to celebrate. Federman thought Grace was ready for outpatient chemotherapy, meaning she could go home afterward. Her mother would have much to do to prepare her for the treatment and deal with its aftermath. Suomi embraced the opportunity.

“It was such a blessing to finally be involved with Grace’s treatment,” Suomi said. “Before, I had no control over what was happening to her. Now, I got to care for her.”

Suomi gave Grace medication on a strictly timed schedule and hooked her up to IV bags for hydration. With the parasite gone, Grace rarely got sick after chemo. She was a regular kid, her mother said, “running around with an IV attached to her chest.”

The rounds of chemo stretched out ahead of them, and Grace sometimes took longer to recover and get her blood counts high enough to get another treatment. There were infections, but there were fewer hospitalizations.

“The family got to eat dinner together and Grace was home with her family at night, sleeping in her own bed,” Suomi said. “It was so much better.”

Grace completed treatment in May 2011 and she’s currently in remission, meaning there are no signs of cancer in her body.

“It’s our hope that that continues and the cancer doesn’t come back,” Suomi said. “But cancer doesn’t follow a normal path.”

Grace gets scans every three months, and sees Federman once a month for check-ups and blood tests. She was home schooled for most of the year she underwent treatment, but was well enough to make it back for the last three days of school.

Now in the first grade, Grace’s hair, lost early on during chemotherapy, has started to grow back and things have settled into a long-awaited sense of normalcy.

“For all that time, Grace and I and my husband and the boys, we did it together, and I don’t ever want to forget one minute of it, because it was so profound,” Suomi said. “We don’t think about tomorrow. We’re just so happy for our good fortune today. We count our blessings every day.”

By Kim Irwin, 2011