How My Son’s Cancer Inspired Me to Help Patients and Caregivers

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”!

Organization is key when you are dealing with a serious medical condition. But at the same time, it’s the furthest thing from your mind.

At our first medical appointments, I took 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. Before long, I had graduated to a tote bug to carry all of Zach’s medical information and our comfort care items.

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. Importantly, I’m sure 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 for 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 patients and caregivers.

Losing a child is devastating. But my experience as Zach’s caregiver inspired me to help other patients and family caregivers 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.

And 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?

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. And we’re all humans who can, and do, make mistakes.

If you’ve read some of my other blog posts, 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. Clearly, these are important factors. Of course, no one wants to experience a medical error — the 3rd leading cause of death in the US. Less dramatically, but nonetheless very important, patients want the best outcome possible, and proper care coordination is a big part of that.

It’s critical for patients (and family caregivers) to remember and understand medical information. Why? 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. Yet, 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.

Lastly, effective patient-doctor communication leads to better adherence of treatment plans, better medical decisions, and better health outcomes. Certainly, anything you can do to improve your communication with your doctor is time and energy well spent.

The ZaggoCare System helps patients and family caregivers.

ZaggoCare provides tips and tools that help patients and family caregivers better manage any kind of illness or injury. Visit our Patients and Families page to learn how the ZaggoCare System can help you, or a loved one, get the best care and outcome possible.

And, it’s a feel good purchase. in honor of Zach, 100% of profits from sales are donated to the Zachary Carson Brain Tumor Fund for DIPG research.