Roberta Carson
In 2005, my 17-year-old son Zachary was diagnosed with a DIPG, an inoperable, terminal, malignant brain tumor. We were devastated when they told us Zach had just 4-6 weeks to live.
We found out at the pediatrician’s office that Zach had a brain tumor on a Wednesday afternoon. The next morning, after a sleepless night, we were getting ready for appointments with brain tumor specialists. I was barely functioning. I tried to make coffee in my simple-to-use one cup coffee pot. I couldn’t do it. I literally couldn’t figure out where to put the water and coffee and how to turn it on. I was functioning at the level of a 2-year old.
Yet, this same day, with my mind spinning, we sat with our new doctor and heard terms we couldn’t understand, while he described the tumor, the negligible survival rate and treatment options. Then he asked us which chemo we wanted for Zach. This decision could determine how long our child will live, or what side effects he might have to endure, and I couldn’t even figure out how to use my simple coffee pot! We did what many others do – we asked our doctor which one he would choose if it was his child.
The severity of Zach’s case left no time for research or to get second opinions. Zach started chemo and radiation two days after diagnosis. I was completely overwhelmed that my son, who had been healthy until just one week before, was likely going to die soon. And there was little to nothing we could do.
Zach endured 32 days of radiation, daily chemo pills, frequent doctor’s appointments and MRIs every 6 weeks. I quickly learned that when navigating healthcare, the adage “You don’t know what you don’t know” is highly relevant. We made our fair share of mistakes, including ones that made our lives more difficult. Toward the end of Zach’s life, he became paralyzed from a fatty deposit of tissue, caused by high steroid doses, that pressed on his spinal cord.
His physical degradation started with falls, and within 6-8 weeks, he couldn’t walk, swallow or talk. Not only was this emotionally devastating, it was also physically hard for me since Zach was 6’5” tall and weighed 200 pounds. By now we were in the cancer center each week for a chemo infusion. He was in a wheelchair, and I needed help transferring him to the bed for his transfusion. After about 4 weeks of this, our nurse asked us where Zach was sleeping. I told her we couldn’t get him upstairs, so Zach slept on the den sofa and we slept on the floor next to him. She asked why he didn’t have a hospital bed. I was dumbfounded. How had we missed this obvious solution? We were so overwhelmed with keeping him alive from minute to minute, we were incapable of stepping back and seeing the bigger picture.
Although Zach received excellent care, his paralysis led to a deep vein thrombosis which traveled to his lungs and caused a pulmonary embolism. He died of respiratory failure at age 19.
My experience taught me that managing a serious illness or injury is hard work for which no one is prepared. As I became more interested in helping others navigate the medical world, I learned just how much patients and families struggle. I knew I had to do something. And I knew Zach would want our tragedy to mean something.
The statistics are staggering. Preventable medical errors are the third leading cause of death in the United States. 40-80% of what patients hear in doctors’ offices is forgotten immediately — and even when information is remembered, almost 50% is remembered incorrectly.
Without clear understanding of medical information, patients are more likely to skip medical tests, go to the ER more often, and have difficulty managing chronic illness. A recent report found that family caregivers feel unprepared for medical responsibilities, including medication management and coping with the lack of care coordination.
Additionally, studies show that effective patient-doctor communication leads to better adherence of treatment plans, better medical decisions, and better outcomes. Yet, this is easier said than done. Doctors struggle with time-limited slots. Patients and families are so overwhelmed they can barely understand, never mind process, the information presented. Additionally, more patients recover at home for medical conditions previously treated in hospitals, forcing families to manage complex care.
After Zach’s death, I started Zaggo, a non-profit organization dedicated to empowering patients and families to help them manage the often-challenging road that is dealing with managing illness and injury. I created the ZaggoCare System®, a how-to Guide with organizational tools, to help patients and caregivers be more engaged members of their medical team – whether they’re dealing with acute or chronic illness, or serious injury.
100% of profits from sales of ZaggoCare Systems are donated to Zach’s Fund for innovative DIPG research.
Together, I know we can help children with DIPG – the deadliest pediatric cancer.