As Tim’s parents, our journey with synovial sarcoma presented challenges and hardships every step of the way.
We want to share some of these experiences and what we learned with the desire to help you navigate your own difficult journey as parents with understanding and courage. When we heard the initial diagnosis from the doctor, our entire world changed in a moment, everything was turned upside down. We experienced disbelief, denial, anger, confusion, sadness, and then resolve…to find a cure.
Upon Tim’s diagnosis, we found ourselves interacting and depending on an entirely new group of people outside of friends and family – doctors, nurses and other medical professionals.
Nothing was the same!
We discovered at this stage of our journey that friends, family and community were empathetic and made efforts to support us, but were incapable of answering the profound questions and deal with the grief we were experiencing.
We had no choice but to totally rearrange our priorities. We plunged into intense research for the best doctors and best treatments. We had one priority, to find a cure. We became intense researchers with focus and energy. Through it all, we made every effort to create an environment at home which was as normal as possible for both Tim and our younger son, Patrick. Outwardly, we carried on our typical activities – work, school, sports, friends and community, yet there was always the underlying reality that cancer was now a part of our “normal”.
We also discovered that although we encountered the same experiences, we responded differently, we grieved differently – and we learned to allow those differences. We also discovered that each of us related to Tim differently and Tim related to us differently. It changed all of us physically and emotionally. Being nonstop alert. For years Tim’s condition and situation contained all our thinking. At times it would make us afraid to leave his room or leave him alone.
Watching our son go through relentless treatments was the most difficult and painful experience imaginable, in our case 7 rounds of chemotherapy, 33 rounds of radiation, several surgeries, reoccurrences, many more chemo’s and its side effects, etc.
As a growing teenager into a young adult we always tried to support his decisions along the way. We observed how quickly he matured and became capable of making important decisions, both medical and non-medical.
Never give up hope.
This can be difficult as the condition worsens and you’ve tried everything. As Tim would say to us; “You never lose, even if the journey ends, you continue on to a new journey!” As treatment options were exhausted, we had to face certain realities, which in our case included considering hospice service to support Tim living at home comfortably in the final weeks of his journey. We consider ourselves blessed to have Tim stay home in the final months of his life.
Tim passed away on January 10, 2016 and left a powerful imprint on others and us. Once again in just one moment our world was turned upside down into a total unknown phase of life; “grief”. To be honest, grief is immensely painful especially because we loved our son deeply. But in the grief we find comfort in the mission Tim left us. Tim made us promise to find a cure for synovial sarcoma and inspire people to “live for others”!
We hope that our experiences will help you wherever you may be in your own journey. We want to walk this journey with YOU!