During summer break from Johns Hopkins University, Alexandra Capellini volunteers at Memorial Sloan Kettering’s Patient Recreation Pavilion, helping patients and their families with art projects to pass the time and relieve stress.
If they notice her prosthetic leg, they may have an inkling that she knows about facing difficult times.
At age 6, Alexandra developed swelling behind her right knee. An x-ray came back with alarming results. “The orthopedist was very upset. He said, ‘She needs to have a biopsy. Have her go to Memorial Sloan Kettering,’” recalls Alexandra’s mother, Dianne.
The family was overjoyed when the tumor was diagnosed as noncancerous. MSK orthopedic surgical oncologist John Healey removed the growth, and Alexandra wore a cast for several months as her leg healed.
A Rapid Return
Seven months later, the family was on a Disney cruise to celebrate Alexandra’s recovery and relaxing by the pool when her mom again noticed swelling in Alexandra’s leg. They hurried home to Brooklyn and quickly got an appointment with Dr. Healey. Plans were made to remove the tumor a second time.
But during the operation, Dr. Healey determined the tumor had grown more aggressive and now involved the large blood vessels and nerves of her leg.
Another biopsy confirmed the tumor was now in fact an osteosarcoma, a type of malignant bone cancer. To remove it, the doctors told the family they would need to amputate Alexandra’s leg.
Amputation, says pediatric oncologist Paul Meyers, who oversaw Alexandra’s care, “is a decision we come at very, very reluctantly.”
“Every time we see a child with osteosarcoma, it’s our intention to remove the osteosarcoma while preserving the limb. But saving the life of the child is our foremost priority,” Dr. Meyers says. “It takes precedence over everything else. If amputation is the right decision, we tell the family it’s what we recommend, and we will support you and help get you through it.”
Knowing how painful a decision it would be, the doctors wanted Alexandra’s parents to feel sure they were doing what was necessary to save their daughter’s life. The team encouraged the family to get second opinions, which they did — 13 of them, from cancer institutions throughout the United States and Europe.
Seven pathologists agreed with the MSK team that the tumor was cancerous. Six believed it to be benign. “It was a really horrendous decision to have to make,” Dianne says. “If it was benign and we did the surgery, she would lose her leg unnecessarily. If it was malignant, and we did not amputate, we could lose her.”
Even as they struggled to decide which diagnosis to accept, Dr. Meyers and Dr. Healey urged the Capellinis to start Alexandra on chemotherapy.
“We have learned from decades of treating this disease that every child already has microscopic spread at the time of an osteosarcoma diagnosis, even though the spread may be too small to show up on a CT scan or a bone scan,” Dr. Meyers explains. “There is no such thing as an early-stage osteosarcoma.”
Alexandra began four months of chemotherapy, and was often hospitalized because of side effects from the drugs. Nurse practitioner Karen Allison worked closely with her and her family on coping with osteosarcoma treatment and the disease itself. A tutor helped her keep up with her schoolwork, and she developed close friendships with other children undergoing cancer treatment, including Michael, a 7-year-old Yankees fan who became her constant companion, and Hannah, her roommate, who comforted her one difficult night.
“My mom had run out to buy a pair of pajamas so she could stay over, and I started running a fever,” Alexandra recalls. “Hannah was in the midst of her own treatment. She went through the cabinets and found me a big blanket, put it over me, and hugged me to keep me from shivering until my mom got back.”
Putting Their Faith in Dr. Healey
Meanwhile, her parents were agonizing over the amputation and trying to come to terms with it. Twice, Dianne met with Dr. Healey, Dr. Meyers, and the cancer care team with the intention of signing the consent forms.
Twice, she left, unable to put pen to paper.
Her husband, she says, finally gave her the strength to choose by reminding her how much more was at stake. “He said, ’I’m not playing Russian roulette with my daughter. If it’s cancer and we don’t get rid of it she will die. We’re not taking any chances.’”
“We put our faith in Dr. Healey,” Dianne says. “We made our decision to go forward.”
After surgery, Alexandra was soon using crutches to get around. Because she still had several more months of chemotherapy ahead, being fitted for a prosthetic and intensive physical therapy would have to wait until she finished treatment and regained her strength.
Returning to School and Life Outside the Hospital
Midway through her third grade year, Alexandra’s cancer was in remission, and she was cleared to return to school. Initially, she found her prosthetic uncomfortable and at times painful, and wore it only a couple of hours a day.
That changed when she started going to summer camps run by the Amputee Coalition of America and attended a special ski program where she learned how to hurtle down black diamonds. She and the other kids bonded quickly, swapping tips on taking care of their prosthetic and limb.
“Skiing was the first time I could move really, really fast,” she says. “That was when I really started gaining my confidence back in terms of physical appearance and ability. And at amputee camp, I could walk around not feeling anxious if my limp was obvious or if my prosthesis was showing.”
Eye on the Future
In high school, Alexandra played clarinet in a prestigious youth orchestra and was editor of the school newspaper. She went on an all-expense-paid trip to watch the 2008 Paralympic Games in Beijing, her prize for winning an essay contest. She also led her school’s Cambodia Club, which raised money to build a school there, and went on a two-week visit to meet the students.
During her time at Johns Hopkins University, Alexandra volunteered with pediatric cancer patients in multiple settings. Her goal is to become a pediatric oncologist.
“Dr. Meyers is really the reason I want to go into medicine,” she says. “It took so much skill to design the treatment plan that saved my life. But he also knew how to speak to me. When I would tell him I was feeling good and was getting to go home for the weekend, I saw a sparkle in his eyes, like that was the best news he could hear.”
She is well on her way: In 2018, Alexandra was accepted to the Icahn School of Medicine at Mount Sinai in New York. She shared the good news with Drs. Meyers, LaQuaglia, and Healey, whom she said “shared the joy with so much support.” Dr. Healey even attended her White Coat Ceremony in September 2018, which marked her entry into the field of medicine.
“I credit so much of the person I am today to those kids and caretakers I had at Memorial Sloan Kettering,” Alexandra says. “I’ve never had that feeling that I wanted to be done with the community of kids with cancer.”