Mark Unger - A Thrilling, Miraculous Real-Life Story of Courage and Determination
This first book by father and author, Mark Unger, was born from his burning desire to document their incredible journey of heartbreak and ultimate triumph. It will be an inspiration to those dealing with unimaginable medical hurdles either themselves or in their families. Today, Mark and his family live in Bethany, Connecticut where he is a Director and Owner of his family business, Unger Global, and active in a number of charities. Mark and Mary Ellen enjoy traveling to explore new places, playing golf, fishing, and riding snowmobiles. And of course, they love being with their sons, Harry and Louis. As our Author of the Day, Mark tells us all about the book, First Survivor.
Please give us a short introduction to what First Survivor is about.
This is a real-life thriller about a family’s battle to save their son from a “zero chance of survival” diagnosis. With the world’s best doctors and the advocacy of his parents, Louis Unger would fight the battle for his young life. His grit and incredible attitude led to a breakthrough that would change how cancer is treated today. This is not a medical journal or a how-to guide. It is a true page-turner that gives you a front-row seat to a miraculous story of courage, inspiration, and determination.
What made you want to write this book?
I wanted to tell this incredible story in order to give others hope and inspiration to never lose hope even if a diagnosis is very poor. Advocating for your child, parent, or loved one is a critical part of a caretaker's responsibility. Often one doctor may say there is no cure, no path forward, while another doctor has a possible treatment that can be a cure. It is up to us as caregivers to find alternative paths.
What was it like for you as a family to get that "zero chance of survival" diagnosis?
Simply devastating. To be told that your son, after 1 year of intense treatment is going to die – from the best doctors in the world, was hard to absorb at first. When the words and meaning sunk in we were in mortal fear. In my book, I describe what it felt like for me, alone with Louis in a hospital room late at night. After some time the emotions turned to determination and rejection of the verdict.
How did Louis handle all the treatments at such a young age?
He was always a fighter with a great attitude. He wanted to play and get all of the medial stuff out of the way of his goals. He was incredibly tough and pain resilient. A true warrior.
The proceeds for this book go to the Carrot Seed Foundation. Why do you find it so important for people to donate to this cause?
My wife and I started this foundation to fund clinical trials for kids with Neuroblastoma. We want to help other kids survive.
At which stage did the doctors accept that Louis is, indeed a survivor?
In 2008, 5 years after his relapse in 2003
You were very involved in the choices around Louis' treatment plan and wrote down things the doctor said, to look it up later. Why was this so important to do?
I have a poor memory, especially when it comes to information from medical doctors. There are many terms and phrases I had never heard before so writing it down helped me to remember it and gain a depth of the terminology. I would highly recommend this to anyone faced with a serious medical situation – take notes – lots of them and ask lots of questions.
You must've done a ton of research. How did you end up picking a specific clinical trial for Louis to take part in?
You will have to read the book about this.
How did the other participants in this clinical trial fare?
Louis was the first to ever survive a brain tumor relapse from his cancer. Now nearly 70% of children survive using the protocol he trailblazed.
What carried you, personally, through this ordeal?
Determination and a burning desire to see my son survive and our family stay intact.
What is your favorite motivational phrase?
Every day is a great day – we used this every day to help us stay focused on the hear and now and not worry about tomorrow too much.
Why did you decide to keep a diary, early on?
It was part of my note-taking.
What would your advice be to other people who are going through a similar experience?
During the first few weeks, the shock and stress of a critical diagnosis make it hard to think. The needs of your child or loved one will drive decision making that you are not qualified to make – doctors will try to explain but the medical world is like being in a different country – everything is new and different. Nurses are the best way to stay informed and true caregivers around the clock. Take notes. Once the fog settles do research on the diagnosis and start to ask the doctors questions about the treatment plan, what their experience is with the disease, survival rates of the institution. Look online for foundations that focus on the specific illness and call them for help. They are there to help you. Strongly advocate on behalf of your child or loved one to ensure they have the proper care. Initially being faced with a life-threatening disease is like a tsunami. After the first wave has subsided it becomes a long term war – you vs. the disease. Endurance and resilience is a must since there are lots of up and downs.