Aaron and his dad Terry
by Terry Edquist, Bereaved Father
My journey starts as most others do, getting married and raising a family. My wife and I had two wonderful sons. I was the breadwinner and she was the stay at home mom that she always wanted to be. We were able to go to our sons’ school functions and sporting events… life was good. Just a normal couple, rough spots included, who never expected our lives would take such an unexpected turn.
Our eldest son Aaron had to have his appendix taken out at age 19. A simple, routine surgery, they do this all the time, our baby will be fine, we thought. The CAT scan revealed a mass in his liver, unrelated to his appendix. The local doctor didn’t have the expertise for dealing with the liver, so he recommended a doctor four hours away. Being scared now, but understanding the situation, we wanted the best for our son; a four hour trip was worth it. The doctor was a wonderful lady, she made us feel comfortable. We needed to trust somebody, so we put our faith in the doctor who exuded so much confidence. The day of surgery we were confident our baby would come home and we would return to our normal lives. The biopsy revealed the mass in his liver was cancerous. Our doctor, being a liver specialist, comforted us that she could remove the tumor and the liver would grow back. We agreed to have her do what she had to do, we trusted her.
The recovery went well, but because the tumor was cancerous, CAT scans were scheduled every 4 months to start. We were now going to the hospital’s cancer center. Wow who would have thought this! The first scan was ok. Great! Life will get back to the way it was, our baby will be fine. The next scan broke our heart, the cancer was back. The doctor revealed the rare form of cancer our son had, and clinical trials were our only hope. We were scared again, but we trusted the experts to make our son well. Two years, another major surgery to remove another tumor and three clinical trials later, we were told they had run out of options. They recommended another cancer hospital with more clinical trials and expertise. So off to the next hospital my son and I went.
We had transferred all the information from the last hospital, to the new cancer center. We were greeted, introduced to the head of the cancer center, and the doctor who would be in charge of my son’s treatment. Again I had to trust someone, they exuded confidence and not having much choice, I trusted they would make our son better. They started a new trial, we had to wait and see if this would work or not. It didn’t so we did a repeat on a new trial. In the meantime, our son had more surgeries. Our son always made it through these trials, tribulations, and setbacks. We still had confidence that he could beat this.
I had researched other cancer centers and found one that had a doctor who knew of this disease, as rare as it was. So we made the decision to try this one. Little did we know the hour glass was running out of time. This whole process was taking time, which we thought we had; we were six and a half years in already. This hospital was 15 hours away, so only my son and I were able to go. My wife stayed home, took care of our other son, animals, bills, etc. We all were scared, but we had to play the cards dealt us. I called my wife everyday with any news and to assure her that I loved her and everything would be ok. God wouldn’t take our son! Two weeks passed, and they were doing what they could.
Then our world changed. I was called to a private meeting room to be told there was nothing else they could do for our son. On one hand, I never thought that day would come, but on the other hand I remember being told at the start this treatment could only give him six months. I made the dreaded call to my wife to give her the news. I was in New York, she was in Michigan, I couldn’t hold her or our other son. The best thing that happened was a friend drove out my wife and son. It is also hard to believe that fifteen of my son’s friends came to say good bye. It was truly a sight to see and comforting to us. But God called our son, with his mom and dad by his side. The journey is far from over, really a new phase has started. It’s been almost four years, we still love him and miss him terribly.
Aaron (left) and Zach at Cancercon
What did I learn from this journey? The bond of a mother to their child, was something I could never imagine. I now know and my love for my wife has grown. She was a real trooper through this. To be blunt, life does go on. It hasn’t been easy, but if you don’t try to move on it will consume you. If it’s a baby step, so be it. You will have bad days, but keep pushing forward.
What would I do differently? No one expects their child to die, but cancer is a killer. You do hear success stories, but what about us? I wish we had advised my son to create a living will, trust, or medical power of attorney, it would have made things simpler. Our son had frozen his sperm prior to his treatments, just in case he lost his fertility. We had no legal right to it, because there was nothing in writing. The same with organ donation. We wanted to give the gift of sight to someone from our son. Yet again, because we had nothing in writing, I had to jump through hoops after our son died, just to be able to donate his eyes. You need to have that talk if it is age appropriate. Do not forget the other siblings, they are hurting too. Our other son still struggles not only with his brother’s death, but with why no one ever asked how he was doing. It didn’t dawn on any of us, that while we were focused on the sick kid, there was another confused and hurting child. Please remember to not leave anyone out, there are other ones that are hurting also.
So we have started this new chapter in our life, without our son/brother. The days go by like pages in a book. We choose to celebrate his life the best way we can every day. We also realize and accept, that not every day will be sunny, there will be stormy days. You will find a way to get through an ordeal like this. You just have to take it day by day. From my family to yours, prayers and find your peace.
My name is Terry Edquist, I live in Niles, Michigan with my wife of thirty one years; Tracie. We have one son Zachery, who just got married and left our nest. I have worked as a quality engineer in a steel mill for the last 20 years. I also am the caregiver to my 95 year old father. I go to the Stupid Cancer summit every year, to try and let parents and caregivers know they are not alone. I do this in honor and memory of my son, Aaron. Locally I have spoken to many parents who have lost a child, regardless of how. It is something no one ever imagined would happen, but it does. It gives me a sense of closure in helping those that are starting a chapter in their life, they never dreamed was possible.