Promoting Resiliency and Helping Families Thrive While Sheltering at Home
Written By: Pat Colleluori, HEADstrong Foundation, CDO & Nick’s Brother
Over the past 8 weeks, families have been tested in ways they never thought imaginable. Amidst the pandemic, we’ve been forced to learn new ways of navigating obstacles pertaining to every aspect of our daily lives. Technology has proven to be a lifeline, helping us to sustain our connections, relationships, education, vocations and interests. Despite fear, heightened anxiety and concern for the well being of ourselves and loved ones, we’re doing our best to pivot and adjust in these times. And though learning to navigate life while sheltering at home has been stressful and challenging, we’ve been resilient in adapting to the “new” normal. In many ways the bond between family members has been strengthened. And while most people are feeling temporarily inconvenienced, this experience is helping us to appreciate the little things and giving perspective to the everyday challenges of people living with cancer, comorbidities as well as other health problems. Their example of how to navigate life with a pre-existing condition through social distancing and quarantining are proving to be a tremendous resource to us all.
Over the past 13 years, my family has had the privilege of serving the emotional, financial, logistical and residential needs of those overcome by cancer through operating the HEADstrong Foundation, EIN: 26-0283021, www.HEADstrong.org. My name is Pat Colleluori and I humbly serve in the capacity of Chief Development Officer for the organization. On a daily basis we interface with people who are amidst their own or a loved ones cancer fight. Our purpose is to empower families in a time of great despair and vulnerability. Our mission is to improve lives affected by the disease. Our goal is to give families the guidance, resources and confidence necessary to go the distance against their cancer, allowing them to explore every option without the obstacles that often stand in the way. We’ve witnessed firsthand the resilience of the human spirit in wake of unplanned and unforeseen life challenges. We’ve encountered families who’ve traveled more than 2,000 miles in the pursuit of treatment, others who’ve foreclosed on their homes due to overwhelming medical debt and have witnessed firsthand the major sacrifices of families to ensure the best care for their loved ones. We’ve been there for the ups, the downs, the victories, the setbacks and unfortunately the losses. And despite having the cards stacked against them, we’ve seen families relentlessly persevere in the wake of adversity and tragedy.
Aside from the 18,000+ families that we have graciously assisted, the experience that we pull from most is that of our own. Sadly, we know all too well the realities of cancer. In 2005, our family had the rug ripped out from under us when my brother Nicholas was terminally diagnosed with non-Hodgkins Lymphoma. He was 19-years old, a student-athlete from Hofstra University. He had aspirations of becoming a teacher and coach in our home town of Ridley, located in the suburbs of Philadelphia, PA. Nicholas was an early childhood education major at the time of his diagnosis. Our family was shaken to our core upon learning the news surrounding the severity of his cancer, but refused to accept the terminal prognosis. Together, we made a pact to go the distance and promised Nicholas that he would never be alone and that we would always be by his side during the treatment and recovery process. Nicholas maintained an optimistic attitude throughout his treatment but was deeply concerned for the well being of our family. His declining health and countless rounds of unsuccessful treatment began to take a physical, emotional and mental toll on our family. Nicholas was ridden with guilt and struggled knowing that something happening directly to him was having such a devastating toll on the ones he cared most about. As family members, we were equally as distraught in watching helplessly as his cancer progressed. About the same time that we found out that Nicholas’ cancer metastasized, we hit a financial wall. The amounting medical debt that we were handcuffed to was consuming. And while every aspect of life was crumbling around us, at our core our family stayed positive. In many ways, Nicholas’ cancer strengthened the bond of our family unit. It forced us to set aside differences and support one another. We pooled resources and each of us played a unique position. We laughed a lot despite the harsh reality that was consuming our lives. We took a team philosophy in fighting cancer. We realized that our family was the one consistent variable in an ever-changing and all-encompassing situation.
Extensive inpatient treatment helped Nicholas and our family to better understand the complexities of the disease, the lack of available resources for families as well as the range of family dynamics and situations on his oncology floor. And while the hospital was close in proximity to our home, this proved to be the most exhausting time for our family. My parents were managing their jobs, the responsibilities of caring for a home, my mother was finishing her degree and caring for a terminally ill child, all at the same time. In our greatest time of need we turned to social workers, friends and family for financial support. There is certainly an element of humility in swallowing your pride and having to ask for help, but that is exactly what we did, because we had no other choice. Heading into a stem cell transplant we were rescued by the generosity of our extended family, friends, neighbors, teammates and community in a time when we needed it most. This unconditional love bestowed on our family, not only gave us hope but confidence to keep fighting. While being quarantined for 45-days in the wake of receiving an autologous stem cell transplant, Nicholas created the HEADstrong Foundation, to serve as the resource that he wished existed for our family. His vision was simple yet critical; helping real families when they needed it most, providing support so that families may live with a greater dignity and normalcy. He fought to improve the inpatient experience, the affordability and accessibility of care and tackled the general concerns facing the patient population. Understanding the ripple effect and impact that a cancer diagnosis had on a family, he championed efforts to support caregivers and capital projects to improve accommodations.
Sadly, Nicholas’ stem cell transplant was unsuccessful and at that point, we were faced with two options, 1) hospice care or 2) a clinical trial in another state. When you’re in a race against time with your mortality at stake, you don’t necessarily think about ramifications beyond seeing another day. And for those living with cancer and comorbidities they’re forced to live day-to-day, which makes planning for an uncertain future nearly impossible. We found ourselves in Maryland, clinging to prayer and one another. Once again we were faced with a lack of affordable and suitable accommodations. Nicholas was facing additional challenges with his kidneys and unfortunately was not a candidate for the trial. Emotionally, physically, mentally and financially drained, we returned home with no options except to make Nicholas comfortable. He was frail, required a wheelchair and physically needed assistance. We played our position as each one of us took turns caring for him. We made necessary preparations at our home, including transitioning my downstairs bedroom into his, because he could not make it up the stairs. I cannot think of a greater pain than watching someone that you love unconditionally struggling. But despite what he physically went through, Nicholas had wisdom beyond his years. He was mature, he understood that his cancer was beyond his control and he accepted his fate. On November 28, 2006, Nicholas passed away peacefully in my father’s arms but prior to taking his final breath, he asked our family to see his vision of HEADstrong into fruition and for us to see it to unprecedented heights. It’s that promise that we hold close to our hearts and one that allows us to move forward through life without Nicholas.
In the end, while Nicholas’ cancer fight and passing were the most devastating experiences of our lives, we’re at peace and comforted in that:
1) We went the distance against the disease.
2) We have absolutely no regrets.
3) Nicholas enriched our lives, collectively made us a closer family and individually made us better people.
4) He taught us how to live in the moment and to the fullest.
5) This experience aided us in creating solutions to real and often overshadowed problems facing the patient population.
6) Nicholas gave our family a beautiful gift in the HEADstrong Foundation which keeps his spirit and legacy alive.
While navigating the grieving process, our family began to deconstruct every hardship that we encountered during our battle and countered those challenges by constructing HEADstrong’s service portfolio to alleviate those issues for families. Today, the HEADstrong Foundation proudly stands a symbol of strength, hope and love. We are a patient-facing organization with accessibility as our highest priority. We proudly grant financial assistance to ease the burden placed on families. We provide guidance, mentorship and consulting for those navigating hardships. We offer logistical resources to aid in transportation expenses associated with treatment, we have inpatient programming which enhances the hospital experience encompassing family meals, care-packages and outlets of entertainment and most notably we proudly operate Nick’s House, a residence which provides over 2,500 nights of complementary lodging for families displaced in the pursuit of lifesaving cancer treatments. All real, tangible and critically needed solutions for those in the fight of their lives.
While we are witnessing rather unprecedented times, it’s important to understand how you can play your position as part of a family system while sheltering at home. I am proud to share my family’s story in hope of providing inspiration in a much needed time. Below you will find 10 recurring themes in our journey against cancer that I hope will serve as a positive reference for staying resilient and navigating life’s unplanned for obstacles.
- Approach situations optimistically.
- Exude patience and understanding.
- Take it day-by-day.
- Don’t live with regret, go with your gut instinct.
- Find the humor in a situation and laugh.
- Be all in. Never give up.
- Everyone plays a position on a team.
- Don’t be afraid to swallow your pride and ask for help.
- There is someone out there who can benefit from your experience.
- Find peace through acceptance.
To learn more about the HEADstrong Foundation and how you can get involved please visit www.HEADstrong.org or follow on Facebook, Twitter and Instagram @HEADstrongFnd.