Oftentimes, it’s hard for me to believe that on September 19, 2007, my son Zachary lost his life to a terminal brain tumor. As his caregiver, I felt overwhelmed with all that is required to navigate the medical world. My experience inspired me to help patients and caregivers get the best healthcare possible.
In June of 2005, Zachary, a previously healthy 17 year old, was diagnosed with a DIPG, an inoperable, malignant brain tumor, with a survival rate of less than 2%. Our world crumbled when we learned Zach had 4-6 weeks to live. My husband and I are grateful Zach lived for 27 months, dying at age 19.
I could barely function, yet we had to make an important decision.
We found out at the pediatrician’s office that Zach had a brain tumor on a Wednesday afternoon. The next morning, after a night of no sleep, we were getting ready to see a brain tumor specialist. I was barely functioning. Making a cup of coffee in my simple-to-use one cup coffee pot seemed impossible. I literally couldn’t figure out where to put the water and coffee, or how to turn it on. Yet, this same day, with my mind numb, we were going to make important decisions.
Our conversation with the doctor was full of terms we couldn’t understand. Zach’s new doctor described the tumor, the slim survival rate and treatment options. Then the doctor asked us which chemo we would like to try. The doctor was actually asking us a question which may 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 other patients and families do – we asked our doctor which one he would choose if it was his child. We didn’t have any time for a second opinion – Zach was dying. Zach started chemo and radiation on Friday, two days after we learned he had a brain tumor.
My first thought was not “let’s go to an office supply store”!
I was taking notes on scraps of paper. A few days in, my sister told me we needed a notebook. How had I not thought of that? I found an old school notebook, taped in my scraps of paper, and organized my notes. A few weeks in, I realized I needed a bigger purse so I could carry all of Zach’s medical information with me. About 4 weeks later, I realized I needed a tote bag, which I dubbed our “chemo bag”.
I became a scribe – writing down everything we heard at each appointment.
I took detailed notes at every appointment. It was helpful to be able to accurately report conversations with doctors, medications prescribed, test results and other issues to each doctor on our team. I am confident that staying organized, taking detailed notes, and taking it all with us whenever we went to a medical appointment saved us. I know it helped us avoid dangerous drug interactions, unnecessary tests and other possible hiccups along the way.
We adjusted to our new normal.
In the beginning, it seemed like we were not going to be able to do this. It seemed too overwhelming and too sad. However, like everyone else dealing with a health crisis, we just got up every morning, put one foot in front of the other, and soldiered on. Before long, Zach’s cancer was our new normal. We adjusted to our new routine that included 32 radiation sessions, daily chemo pills, frequent doctor’s appointments and regular MRIs. It was important to us that Zach had joy and fun in his life. We even arranged a test drive in a Ferrari – a dream come true for Zach.
I was struggling to manage Zach’s care more than I realized.
When navigating the healthcare world, the adage “You don’t know what you don’t know” really plays an important role. Unfortunately I didn’t realize this right away. I honestly felt like I knew what I was doing, asking all the right questions and keeping track of everything in my notebook. However, I wasn’t as “with it” as I thought. As time passed, we encountered situations where we asked ourselves “Why didn’t anyone tell us this?” or “Why didn’t we think of this sooner?” I have to admit, Zach was sick about 9 months before I realized I wasn’t earning a “caregiver superstar” award. For instance, no one told us we shouldn’t handle Zach’s chemo pills without wearing gloves and a mask. Why would I think to ask that question? A caring nurse at Zach’s school mentioned this to us in passing, assuming we knew.
Zach’s cancer inspired me to help others.
Losing a child is devastating. But my experience as Zach’s caregiver inspired me to help other patients and families better manage medical conditions. I know how hard and overwhelming it is to be a patient or family caregiver. And, no one feels prepared. I founded Zaggo, a nonprofit organization, to help other patients and family caregivers be more engaged, empowered, effective members of their medical team. I created the ZaggoCare System which features a how-to guide, along with organizational tools, to empower patients and their caregivers.
Why is patient empowerment so important?
If you’ve been reading my blogs over the past years, you’ve heard the statistics. Studies show that patients who are engaged in the process have better care coordination and a reduced risk of being a victim of a medical error. Additionally, effective patient-doctor communication leads to better adherence of treatment plans, better medical decisions, and better health outcomes.
Yet, managing a serious medical condition is hard. Doctors struggle to see patients in time-limited slots. Patients and families feel so overwhelmed they can barely understand, never mind process, the information presented. Additionally, we’re all humans who can, and do, make mistakes.
How does this impact patients?
The statistics are staggering. Hospital-based medical errors are the third leading cause of death in the US. And, research shows that 40-80% of what patients hear in doctors’ offices is forgotten almost immediately — and even when information is remembered, almost 50% is remembered incorrectly. Without clear understanding of medical information, patients are more likely be hospitalized, take medications improperly, skip needed tests, go to the ER more often, and have poorer health outcomes.
The ZaggoCare System can help.
ZaggoCare’s tips and tools can help patients and family caregivers managing any kind of illness or injury. And, in honor of Zach, 100% of profits from sales are donated to the Zachary Carson Brain Tumor Fund for DIPG research.