There are lots of ups and downs for families with children who have life-threatening illnesses. The Hallisy family of San Francisco, California, faced plenty during their daughter, Kate’s, decade-long battle with eye cancer.
One constant that guided the family through the ordeal was “seeking the best information and weighing all our options carefully,” says Julia Hallisy, Kate’s mother.
Throughout Kate’s illness, her parents had to make several life-altering treatment choices for their daughter. It all began when Kate was diagnosed at 5 months with malignant tumors in both eyes. After a successful initial treatment, the cancer returned in Kate’s right eye at age 2.
“We had to decide how aggressive we wanted to be in attempting to save her eye,” Julia relates.
“It was because we were so diligent about learning our options that our daughter had the best quality of life possible throughout treatment.”
Doctors near their home in San Francisco recommended immediate removal of the eye. “We relied heavily on the advice of Kate's eye doctor,” says Julia, recalling the importance of having a strong working relationship with Kate’s physician. “We trusted her judgment, and she understood our treatment goals and why those goals were important to us.” But, she remembers, “We did not want our daughter to lose a part of her body—even an eye that had less-than-perfect vision.”
So the Hallisys took several more steps before making a final decision. To see if it was possible to stop the tumor while still saving Kate’s eye, the family decided to seek another opinion from a specialist at Children's Hospital Los Angeles. The alternative was a new procedure, a radioactive implant.
They spoke with the Los Angeles specialist on the phone, researched his reputation, read his published research, and consulted with other doctors. The Hallisys also spoke to another family who had been treated by the same specialist.
Based on that collective information, they tried to save Kate’s eye. “Unfortunately, ultimately, it was not successful, and we had to remove her eye,” says Julia. But their strategy and approach to weighing Kate’s treatment options, says Julia, “gave us the peace of mind we needed to move forward and feel comfortable in our decision.”
Their considered approach helped their daughter on several occasions, including when Kate was 8. Her then-pediatric oncologist recommended that she stop taking a combination of three drugs designed to prevent the cancer from worsening or spreading to the bones. One of the three drugs in her “maintenance chemotherapy” cocktail caused Kate to lose her hearing. The doctor did not want to proceed with just two of the drugs, and recommended pain medicine for when the cancer would likely surface in her bones.
“There was no evidence of cancer in her body at that time,” Julia says. The family wanted Kate to continue on two chemotherapy drugs. Although they knew Kate’s illness was terminal, “we wanted to avoid” particularly painful bone cancer, she says.
They sought a second opinion. A pediatric oncologist at Stanford told them while the two-chemo drug therapy was not a cure, the treatment could help to extend Kate’s life in a meaningful way. Treatment continued.
“Seeking a second opinion is important,” Julia says. “Things happen over the course of treatment. You can lose confidence in a doctor. Or perhaps your goals or situations change.”
“Our daughter lived a very nice life for 19 more months,” Julia says. “She went back to school and walked without crutches.” The family, which also included two brothers, went on several vacations, including a trip to Disneyland. There was love, laughter, and a chance for the girl’s youngest brother to get to know his sister and create memories of her during her final months.
“We always knew that we may not make perfect decisions, but we didn’t want any regrets about not getting the best information and weighing all the options carefully before making a choice,” says Julia.
Today, it’s easier than ever for patients to weigh their treatment options. Patients can get information from numerous places—disease-specific groups, consultations with doctors, second opinions from specialists, and even other patients facing the same illnesses. “You just have to jump in and start looking to see that good information is right at your fingertips,” Julia says.
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