One of the core elements of The Fly A Kite Foundation Is to advocate for parents, families and children suffering from Pediatric Brain Cancer. When I first identified the need for this to be a valuable service, I wasn't sure exactly how and what the "service" would have to offer. Would I be required to connect with the family's oncologist and intervene where I see a need? Was I supposed to get on the phone with the families insurance company and fight for coverage?
The concept of advocacy is defined by Oxforddictionaries.com as, "the act of pleading or arguing in favor of something, such as a cause, idea, or policy; active support. Public support for or recommendation of a particular cause or policy."
Over the past 24 month, I have spoken to over 100 families at all levels of their journey. From initial diagnosis to end of life discussions. I have not had one argument over the hundreds of conversations. I think most importantly, The Foundation become a long-term outlet for families to share their experiences, vet ideas, listen to their plan, and provide solicited feedback from someone who has walked in the families shoes.
I recently connected with a mother who was in the early stages of her child with DIPG. I learned through my conversation, the mother was bankrupt, lost her job to be with her child, had to sell her house and move in with a friend and is going through a divorce. All of their individual obstacles are traumatic enough, but I marvel of the courage both mother and child have and the steps they have and will take to move their journey forward.
When I communicated with the mother, I was very clear with my suggestions. I educated her on all the support groups out there that could help feed, shelter and cloth her family. Daycare options so she can look for a job that provided flexibility, recommendations for advanced treatment through her oncologist that would provide hope for the family and grant extra time for her child. We worked together to build out a 30 day life plan to start getting her organized for what will lie ahead. The list was very clear.
- Whom is your support person? The person who you can lean on 24/7, 365
- Have you fully learned the services your insurance company provides and what treatments will they cover?
- Do you have an insurance case manager? Someone who will be assigned to you when you have insurance issues or questions.
- Do you have an outlet for treatment discussions? A team of doctors to vet idea off as a second or third opinion.
- Do you have a stable environment to manage your child's care?
- Have you set-up a funding site for medical bills and life expenses?
- Have you gone online to different support groups that can share experiences and feedback?
- Have you connected with your religious leaders to provide communal support among its members?
- What are you doing for yourself? How are you separating to give yourself a chance to breathe?
I asked her... "how come none of this was discussed with your oncologist or social worker who could be an invaluable resource in time of need. Her response was... "I didn't know what to ask."
Often when we are challenged with life changing events, many of us sit back and wait for others to guide us with the hope that the information we seek would be the correct path. I've realized early on in my journey, when it comes to inoperable life threatening illnesses, there is no right or wrong. No matter what, the outcome will be the same but the journey we take get there can take so many paths.
Due to our ignorance, we put a lot of confidence in our medical providers to help guide us through the turbulent waters. Sometimes, we just don't know what to ask. We often dismiss our own questioning for fear we may not have the answers or insights. We trust others around us who we feel are the resources we need to solve the problems we face. I find there is more confusion then ever and partners need to be assigned when discussing matters of health to make sure the decisions are in the best interest of the patient.
I recently asked my friend Stacy to share with me her own journey with cancer at a young age and the connection she had with her father. Her father Philip was born on May 28th, 1922 and pasted on August 10th, 2015 due to cancer. Devoted husband, father, scientist and philosopher. Philip was compassionate and caring, missed by many. Like many "daddy's little girl," Philip was her hero. "The smartest person in the world," she adds. It's seemed my father was ahead of his time and just knew everything about everything. The bond was special and the passing heartbreaking. One of the questions Stacy asked her father during his final days were... "Daddy, How will I ever be as smart as you?" his response was... "Always Be Curious."
I find this simple but impactful exchange reminds us that we are in control of our life. From seeking the right medical treatment, to making life changing decisions, the idea of asking questions, pushing for a response that instinctively you want to hear and the continuation of always being curious will provide clarity to unanswered questions. It will give you more control over situations and provide better decision making for the outcome you desire. The outcome may not always be positive, but at the end of the day, we have control over our journey vs the control of others. As the foundation continues to define our "advocacy" purpose and role, we continue to empower families to take control of the situation and move down a path they feel is right for them. Not everyone is on the same path but everyone should "Always Be Curious."