Carly Tobin loves dancing for the fun and freedom it provides. During treatment for a rare pediatric kidney cancer known as Wilms tumor, the pre-teen’s passion also proved a vital source of strength.
Diagnosed in early June 2019, Carly — now 11 and cancer-free — underwent surgery, radiation, and chemotherapy at Dana-Farber/Boston Children’s Cancer and Blood Disorder Center during the next six months. Throughout this period, she rarely missed one of her thrice-weekly sessions at the dance studio she attends near her family’s Natick, Massachusetts home.
At a time when so much in Carly’s life was uncertain, the familiar rhythms of music and movement gave her comfort. So did the support of her dance friends, many of whom she has known for five-plus years and dances with competitively.
“Even after chemo, when I was feeling icky and awful, going to the studio was the one thing I always wanted to do,” says Carly. “Nine times out of ten I did go, because I just felt so loved and happy there.”
For Kerri-Ann, Carly’s mother, one moment encapsulates this period.
“We were leaving the studio, and Carly looked up at me and said, ‘Mommy, I love being here. It just helps me forget about everything for a little bit,’” recalls Kerri-Ann. “The studio is where she can be herself and do what she loves.”
First warning signs
Everything began for the Tobin family in May 2019, when Carly started experiencing lower back pain.
“We thought she pulled a muscle at dance,” says Kerri-Ann. “Then she presented with a stomach virus as well, and we got more concerned.”
Both are warning signs of Wilms tumor, but Kerri-Ann and Carly’s father, Matt, did not know this at the time. When Carly’s fever went up and her abdominal pain intensified, their pediatrician told them to go to the nearest emergency room. Within hours they were at Boston Children’s Hospital, learning Carly had a tumor the size of a softball in her kidney.
As a regional, national, and international referral center for solid tumors, Dana-Farber/Boston Children’s has extensive expertise treating children with kidney tumors — including complex tumor sub-types rarely seen elsewhere. The Tobins came under the care of a team led by surgeon Dr. Christopher Weldon, and oncologist Dr. Elizabeth Mullen, program leader for kidney and renal tumors at Dana-Farber/Boston Children’s.
After the tumor was removed, Carly arrived home from the hospital to find a surprise in the family’s backyard: colorful stepping stones decorated with the handprints of her dance teammates.
“The support from the studio and the other dance families was very much a part of how we navigated the cancer process,” says Kerri-Ann.
As she continued recovering, Carly was able to return to her dance classes and choreographing her own dance routines at home.
“It helped me let loose,” Carly recalls.
During the six months and 25 chemotherapy treatments to come, others rallied around Carly. Her big brother, Jacob, made sure she got all her assignments when she missed school. Kerri-Ann and Matt formed Team Carly’s Courage – a group of friends and family that covered the 5K route of the Boston Marathon Jimmy Fund Walk from the Dana-Farber/Boston Children’s Longwood campus to the Copley Square finish. Carly needed piggyback help from her dad along the way, but crossed the finish line herself.
This year, Team Carly’s Courage plans to take part in the Jimmy Fund Walk virtually.
Carly’s first all-clear scan, showing no signs of cancer, came on Dec. 19, 2019. Her active treatment over, she now visits Dana-Farber/Boston Children’s every three months for scans. As of now, the cancer has not returned.
As time has passed, she is feeling stronger and more confident on the dance floor. Before the COVID-19 pandemic forced the temporary stoppage of live events, one of Carly’s favorite nurses came to a February competition that Carly participated in. These days she is staying in touch with friends and taking virtual classes by Zoom.
Now, readying to start fifth grade, Carly looks forward to when she and her dance friends will no longer need to wear masks or be socially distant in class. She still dreams of a professional dance career, but is giving more thought to two other vocations: doctor and nurse.
“Everything I’ve been through made me realize how caring and loving they are,” she says.
Learn more about treatment for Wilms tumor from Dana-Farber/Boston Children’s Cancer and Blood Disorders Center.
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