My daughter, Katherine Eileen Hallisy, fought cancer five times by the time she was ten years old. As is so often the case, it is the extraordinary strength and profound wisdom of a child touched by hardship that inspires those around her to channel their grief into action.
In October of 1989 our second child, Kate, was diagnosed at five months of age with bilateral retinoblastoma after malignant tumors were discovered in the retina of each eye. Normally, retinoblastoma is a treatable and usually curable type of cancer. The doctors were encouraging and told us optimistically, “If your child has to develop cancer, this is the kind to have.”
Unfortunately, this was not to be our daughter’s destiny. Kate’s disease was extraordinarily aggressive and she experienced several recurrences, which necessitated the removal of her right eye and two years of chemotherapy and radiation treatments. The aggressive treatment seemed to be successful and for a few precious years our interaction with the health care system was limited to MRI scans, bone marrow biopsies and several reconstructive surgeries.
In 1997, our world came to a screeching halt when Kate developed leg pain that was diagnosed as osteosarcoma. Children afflicted with retinoblastoma are particularly susceptible to developing bone cancers, but we had always hoped that our daughter would be spared. Kate was rushed to our local medical center for a biopsy to confirm the presence of the potentially life-threatening tumor.
In addition to coping with the horrors of dealing with metastatic cancer, we were immediately engulfed by formidable and unforeseen enemies – medical error and hospital-acquired infection. Kate was infected with Staph aureus while in the operating room for a “routine” 30-minute biopsy procedure. Blood tests taken 48 hours after surgery revealed an elevated white blood count and signs of impending kidney failure. Kate was rushed to the Pediatric Intensive Care Unit and began to deteriorate rapidly. Within hours, her kidneys and lungs were failing, she required medication to maintain a blood pressure and she was placed on a ventilator to breathe. Doctors told us they didn’t expect her to make it through the night.
Kate did survive the night but her recovery would include seven weeks in the PICU, kidney dialysis, emergency surgery to treat the infection in her biopsy site, bed sores and excruciating pain as she was weaned off the ventilator. Kate came home from the hospital for two short weeks to regain her strength and then had to return for an above-the-knee amputation of her right leg. It was a crushing blow after she had overcome almost impossible odds to survive the septic shock, but my husband, John, could always pull me out of the sad, sorrowful depths by saying “We’re not going to mourn for her while she is still alive. We’ll have the rest of our lives for that. Our job is to make the most of every minute we do have.”
It was many weeks later that Kate began to verbalize her profound thoughts on her disability. “You know, I will be able to walk again with a prosthetic leg. Some people lose both legs or a leg and an arm. I have it easier than they do.” One of the many mercies Kate was shown was the inheritance of her father’s remarkable outlook on life. What else could I do but follow her lead in the presence of such an indomitable spirit? I wouldn’t allow myself to spend much time in dark, hopeless places when I could instead choose to see the world through Kate’s eyes. She was, and still is, my beacon, my shining star and my glimpse into heaven.
Kate’s treatment for the osteosarcoma involved more chemotherapy treatments. We checked into the hospital every few weeks with her pillow, an array of stuffed animals and a notebook to start writing down what we had learned about staying safe in the hospital. We both felt the need to document our hard-won lessons, and over time, our efforts segued into a plan for a book.
Kate lost her battle with cancer in February, 2000, but she lived to ring in the millennium, which was one of her last goals. We have dozens of photos of Kate and her brothers wearing head bands emblazoned with the number 2000, waving noisemakers and hamming it up for the camera. I had promised her that I would finish the book so others could avoid many of the adversities she had faced as a medical patient. As important as it was to be true to my word, there was a price to pay. Putting words to paper forced me to relive so many horrific experiences and it kept the floodgates of painful memories open. It also meant that my two young sons had to sacrifice time with their mom when we were all struggling to find our place in a world that no longer included Kate.
My younger son, Kevin, was only six years old when he lost his sister, but he took her death particularly hard. He spent over a year sleeping in her bed, cuddling her precious stuffed animals. At first, my husband and I tried to gently dissuade him from doing this, but it was clear that he took great comfort from physically putting himself in the places Kate had been, where he felt close to her presence.
As the years have passed, I realize that I have done almost the same thing by leaving Kate’s room untouched. The door remains open and it is the first place I look to each morning. After eight long years, sometimes it still surprises me that she isn’t there. When my husband lost his mother two years ago, he brought home one of her prized possessions: the family bassinet. We put it in Kate’s room and it makes me happy to think that one day it might welcome our grandchildren. And as soon as they are old enough, they can learn about their remarkable aunt and see and touch the things in her room that were precious to her.
While my little six-year-old seemed to understand that the book represented an almost sacred vow to his sister, he still regularly encouraged and reminded me to finish as quickly as possible. I didn’t blame him for being weary of the sacrifice involved in believing and making sure that the short life of a ten-year-old girl could have a positive impact on the world. There were times when I had to put the project aside to regain an emotional equilibrium, and, in the end, the project took eight years to complete. Kevin was fourteen when I could finally announce a publication date and his impatience had evolved over the years into unwavering support.
One of the greatest rewards of the book project is that it taught my sons that our tragedy didn’t have to define us. In fact, the book became a vehicle to help us channel the pain of our loss into actions that would honor Kate’s memory. We had held on to the beauty and the meaning in our lives and I hope that in any future struggles, our sons will be able to draw on that experience to sustain them and those they love.
Once I became involved in patient safety efforts, legislation for HMO reform, and in working to pass a Patients’ Bill of Rights, I began to feel stronger as my voice was heard by legislators, union members, the public and the media. I feel fortunate to have found my path early and easily. In fact, at times the work to improve patient safety seemed to choose me once I made up my mind to keep moving forward. Others should know that they may need to be patient while they search for their voice. Start by telling your story, sharing your tragedies and your triumphs – even if they seem small or insignificant. Anyone is capable of making a deliberate decision not to be consumed by anger, despair or hopelessness. Know that your sorrow, pain or hardship can be the genesis of lifelong passion and commitment.
Dr. Hallisy’s book is entitled “The Empowered Patient: Hundreds of life-saving facts, action steps and strategies you need to know.”