No one would choose the way Glen Jusczyk and Greg Kelly became friends: at the bedsides of their little girls with cancer. Yet these extraordinary circumstances created not just a friendship, but a desire to give back to the place providing their children’s care.
On April 16, these dads, who consider themselves “out of shape,” will run the 116th Boston Marathon® as two of more than 550 runners on the Dana-Farber Marathon Challenge team to raise money for the Claudia Adams Barr Program in Innovative Basic Cancer Research at Dana-Farber.
Jusczyk’s daughter, Malia, was diagnosed with neuroblastoma, a cancer that forms in nerve tissue and mostly affects young children, when she was just 2 years old. The family moved from Orlando, Florida, to Boston shortly after the news so she could be treated in the Neuroblastoma Program at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center, which provides research and the latest treatments.
“We packed our bags as soon as we could,” recalls Jusczyk. “We have family in the Boston area and we wanted Malia to be at the best cancer center in the world for her disease.” There, Jusczyk met Kelly, whose 5-year-old daughter, Charlotte, was across the hall fighting the same type of cancer.
After more than two years of treatment, Charlotte Kelly passed away age 5, snuggled with her parents on their couch at home. It was the way she would have wanted it, said her father.
Malia, who turns 4 in June, received very aggressive treatments, including several rounds of chemotherapy; surgery to remove the tumor in her belly and, later, a kidney; a stem cell transplant; and radiation therapy, explains her doctor, Dr. Joanna Yi, a fellow working with neuroblastoma expert Dr. Lisa Diller. Malia is now getting an antibody therapy to make sure all her cancer cells are gone.
“It took a very extensive team to care for Malia,” says Yi. “In addition to Dr. Diller and me, she needed coordinated care from a surgeon, radiologist, radiation oncologist, pathologist, and transplant specialist, and we held frequent conferences about her care.”
Yi adds that the inpatient and outpatient nurses are skilled in caring for children with neuroblastoma, and that a psychosocial team is assigned to each family to help them cope.
“Neuroblastoma strikes young, innocent children before they are old enough to complain about symptoms,” says Kelly. “It makes me wonder, ‘Who’s next?’ Someone out there will always be next until a cure is found. There is nothing we wouldn’t do to help another family or child fighting this disease.”
Such as running a marathon.