Our family discovered after our daughter Jennifer’s diagnosis with GBM Brain Tumor that taking care of a loved one with an illness like a brain tumor brain cancer was a daunting experience but knew that we needed to immerse ourselves into understanding our families journey ahead and yes, it’s a journey.
As parents of a child with a terminal illness, you never question what your priorities are in becoming a care giver but need to seek and understand the seconds, days, weeks and months ahead. The most important lesson we learned is that you should surround yourself with professionals whose life is dedicated to not only managingcuring the tumor or cancer but also to lean on your family and organizations that are dedicated in offering their time and support to you as caregivers. We were blessed to have Jennifer’s “guardian angel. Dr. Allen Waziri Co-Director of the Inova Neuro-Oncology Program and Director of the Inova Brain Tumor Laboratory, the INOVA Health System, Capital Caring, social workers, as well our family and friends network that walked by our side for the seven months while Jennifer battled her fight against GBM. The key to living with the new norm is to attempt to understand the diagnosis, tests, surgeries, treatments and care options that are available to you.
In our story, once the initial shock of the diagnosis of (Stage IV) GBM was presented to Jennifer and our family, we naturally felt our world crumble around us and looked around in disbelief of the news. In fact, the silence in the room was deafening and our physical, emotional and psychological presence was similar out an “Out of Body Experience” with extreme thoughts of disbelief and denial. Once we woke from our shock, our next thoughts where how is Jennifer reacting to this news that her diagnosis is terminal with a life expectancy of 12-15 months at the age of 38 and her path ahead is to face multiple brain tumor extraction surgeries, radiation and chemotherapy.
Then reality sets in with every emotion imaginable from grief, anger, disbelief, struggles, loss to deciding how to get your arms around the inevitable and making every second of every day count like it’s your last breath with your loved one. When your child has a brain tumor, it affects the entire family. Stress and anxiety levels are at a daily high, you become sleep deprived, worried and stretched beyond your personal capacity, however as we learned there is a wide range of support services for parents, caregivers, patients and others.
Our Foundation is here to provide the support to you from a family that has walked this difficulty journey
Sometimes the very best support comes from someone who truly has lived the life with a brain tumor, being a care giver and understanding what you are experiencing to offer the support from first-hand knowledge of what’s expected ahead as a “Warrior in Grey”.
Our goal is to put you in contact with other families who are in a similar situation through our INOVA network or other organizations like the American Brain Tumor Association , and their Connections Online Community, powered by Inspire and National Brain Cancer Tumor Society. It is comforting to talk to other parents about the challenges they have overcome, to share practical advice, insight and friendship. Many Connections participants are inspired by the people they meet and the experiences they share.
Our family found the below LINK as a helpful guide to understanding a diagnosis of Cancer.
Last, please take time to read the “Orientation to Care Giving, A Handbook for Family Care Givers of Patients with Brain Tumors”.
Please feel free to reach out to our foundation if you need any assistance in finding support or information for your family from our family’s journey with our daughter Jennifer.