Walking the path through childhood cancer brings monumental emotional and financial challenges to a family. From first hearing those frightening words, “Your child has cancer,” to navigating job and income loss at a time of skyrocketing medical bills, the road is fraught with anxiety. We invite you to walk in the shoes of some of our Tom Coughlin Jay Fund families as they share their personal journey through the short- and long-term effects of childhood cancer.
Araya’s Story
Amy’s Story
Araya’s Story
Suffering in silence has become all too familiar to me. Locking my pain and fears away seemed like the only way to navigate the horrors of childhood cancer. Friends, co-workers and even some family members were unaware of the difficult road my family and I were traveling, but my stoic silence came at the cost of my physical and mental health. So, I now share what it has been like to walk in my shoes — to hear those devastating words, “Your baby has cancer.” I have learned we have a compassionate community of support around my family and that no one fights cancer alone.
I was speechless as I walked out of the hospital room 18 months ago. My world and my hopes and dreams for my sweet baby boy shattered into a million pieces as the doctors told me my 15-month-old son, Joey, had retinoblastoma. I had noticed some subtle changes in the alig
nment of Joey’s eye and, thinking it could be signs of amblyopia (commonly referred to as “lazy eye”), I scheduled an appointment with a retina specialist. That visit was followed by a whirlwind trip to the emergency room and then an excruciating two-hour drive to Wills Eye Hospital in Philadelphia. After x-rays, MRIs and too many doctors to count, we were told the devastating diagnosis.
Within days I was pacing the floor of the hospital as my baby was wheeled into the operating room to have his right eye removed to prevent further spread of the cancer. When we were given the go ahead to comfort him in the recovery room, I shook nervously, too afraid to pick him up and cause more pain to his heavily bandaged face. This began my months long journey through childhood cancer.
Joey’s diagnosis and treatment plan was an enormous financial and emotional hardship for our whole family. I quit my job and twice a month pulled my older son, Jeremiah, out of school so we could make the two-hour trek to Philadelphia for Joey’s chemotherapy. My husband James was forced to stay at home to continue working to ensure we still had income and health insurance to help pay for the skyrocketing medical bills. Gospel music and prayer kept me company on those frightening drives, knowing that Joey would soon be facing dreadful side effects from the toxic drugs required to save his life.
The costly road trips required a three-night hotel stay, or lodging at a Ronald McDonald House when available, as well as added food and transportation costs. The Jay Fund was a vital lifeline, helping to pay our household expenses and grocery bills, as well as providing avenues to nurture m
y mental and physical health.
Feeling uplifted after a caregiver retreat hosted by the Jay Fund, I shared my family’s story for the first time with a local reporter. Broadway performer Jeff Gorti happened to see the resulting article, and our story resonated deeply with him. Like Joey, Jeff was diagnosed with retinoblastoma as a toddler and had his right eye replaced with a prosthetic. Jeff reached out to me and we both cried as he shared his triumph over childhood cancer and determination to achieve his dream of becoming a Broadway performer, despite his limited vision.
Jeff invited our family to watch him perform the lead role of Billy Flynn in the Broadway production of Chicago. At the conclusion of the show, we joined the packed house in a standing ovation and were filled with renewed hope for the future as Joey’s little feet ran to meet Jeff and his castmates. With chemotherapy and surgeries now in the rearview mirror, and the inspiring words of encouragement from Jeff Gorti, I am ready to continue my path forward and am reveling in the resilience and spirit of my little boy.
–Araya, mom to Joey, age 3
Amy’s Story
Black New Balance sneakers, those were the shoes I was wearing the day my two-year-old daughter Kyla was diagnosed with leukemia on June 10, 2022. Looking at those shoes, I am reminded that it has been a journey defined by a single, all-encompassing emotion: Fear. It has become my relentless companion, a shadow that looms over each step, each decision, each moment of this marathon with no apparent finish line.
Everything happened so quickly after Kyla’s diagnosis, faster than my New Balances could keep up. There was no time to process or train for what lay around the curve in this fork in the road. It was on a Friday we were told she had cancer, and by Monday doctors had started chemotherapy.
There were no real choices regarding which direction we would proceed. From the moment doctors said those heart stopping words: “Your child has cancer,” my family’s life transformed into a series of hospital visits, chemotherapy sessions, and the heart-wrenching cries of a two-year-old facing needles and medical procedures. Me and my New Balances have yet to have a moment to truly slow down and catch our breath.
But that hasn’t been the most difficult part of this never-ending course. In April 2023, my husband Roger and I received news that after 10 months of treatment, Kyla’s cancer returned in her spinal fluid. This brought a new wave of fear, intensifying the anxiety that preceded every medical appointment. Fear even crept into our monthly bills, adding strain and another layer of burden on our financially and emotionally fatigued family.
In our quest for a solution, we explored options with Kyla’s care team at Nemours Children’s Health. We discovered hope in the form of CAR T-cell therapy, available through a clinical trial at the Children’s Hospital of Philadelphia. This innovative treatment became a lifeline and path forward; however, it was quickly riddled with hurdles in the form of travel and living expenses. Flights to Philadelphia, accommodations, and day-to-day necessities strained our resources. Sadly, often-overlooked costs associated with childhood cancer—the expenses of daily life–persist even in the face of a life-altering illness.
The Tom Coughlin Jay Fund became our lifeline. It has helped us cover our mortgage and auto repairs and provided holiday meals for our family. As we continue to travel to Philadelphia for follow-up visits, the Jay Fund gives us hope as well as the opportunity to have date nights and outings where we can bond with other parents of childhood cancer patients.
As much as I try to stay positive, my fear has not faded, but my New Balances still have plenty of wear in them. Despite the persistent fear that lingers when Kyla mentions an ache or pain, or during each medical appointment, the knowledge that we are not alone buoys our spirits. With my husband, children, Kyla’s dedicated care team, and the Jay Fund by our side, the path ahead becomes more bearable.
No one can walk in another person’s shoes. We each have our own race to run, yet it is in the race itself we’ve found community with others willing to run alongside us. Through this support, we find the strength to keep putting one foot in front of the other, knowing that the burden of the race is shared, and hope propels us forward.
–Amy, mom to Kyla, age 4