A diagnosis set off a chain of events that could have claimed Cami de Leon’s life. The South Carolina teen was experiencing leg pain, so her mom took her to the pediatrician. An X-ray revealed a mass growing in her leg, prompting a referral to MUSC Shawn Jenkins Children’s Hospital.
“I met Cami as a referral. Her primary care provider sent her to see me because they found a mass, which is a parent’s worst nightmare,” said Anca Dumitriu, MD, a pediatric hematologist oncologist at the hospital.
Cami was diagnosed with Ewing sarcoma, a rare type of bone and muscle cancer that affects about 225 kids each year. “It’s a very, very scary diagnosis,” said Cami’s mom, Claudia. “You never think it will happen to your child, but it happened to her.”
One complication after another
Claudia said Dr. Dumitriu eased their minds by explaining how the treatment would unfold in detail. First, Cami had surgery to remove the tumor; chemotherapy was next to eliminate any trace of cancer. Though successful, the cancer treatments damaged her heart. Two months after her final chemotherapy treatment, Cami’s heart failed due to cardiotoxicity.
“One of the worst side effects of chemotherapy is toxicity to the heart, which happened in Cami’s case. It became apparent that she was going to need more than just medicines. We recommended surgery to place a ventricular assist device, which is a heart pump that would take over the work of her heart,” said Heather Henderson, MD, the medical director of heart failure and transplant pediatrics at MUSC Shawn Jenkins Children’s.
Six months later, Cami experienced an unexpected setback. A stroke paralyzed the left side of her body.
“I had to learn how to walk again so I did a lot of physical therapy,” Cami said. “Before everything happened, I didn’t really appreciate being able to walk and everyday things. I was just grateful that I was able to walk again.”
Cami’s challenges didn’t end there. Since her heart was not able to recover from the effects of chemotherapy, Henderson recommended a heart transplant.
Gift that keeps on giving
Miraculously, a heart became available for Cami within 24 hours of being added to the transplant list. It was two days before Christmas.
“We’ll always remember when her doctor came to her room at 7 o’clock that morning and told her they have a heart for her,” Claudia said. “I was very emotional. We all cried. We were so happy. We were nervous, too.”
Her mom may have been scared, but Cami wasn’t. Her experience had prepared her to face this hurdle with confidence. “When I was getting a heart transplant, I wasn’t really that scared since I had been through worse than that,” she said.
That confidence may have helped Cami recover as quickly as she did. Within a week of receiving her new heart, Cami was home.
“She’s doing well. She’s thriving. She can be a kid, a teenager with a normal life. That’s what we celebrate,” Claudia said.
Watch a video of Cami's story and other patient stories from CHA's Made Possible campaign.
