Never in his Acute Lymphoblastic Leukemia (ALL) journey did Joe’s care team present information in the context of ALL being rare. Yet, it is classified as a rare condition. And as Joe shared his experience with me, I was struck by the number of similar undercurrents there were with many of the rare patient communities I’ve learned from over the years.
Most notable, among a wide range of potential feelings and reactions one could expect upon receiving such a shocking diagnosis, Joe tells me he felt a sense of relief. Regardless if symptoms persist for years, months, or just a few weeks, a diagnosis brings with it an answer. “When the oncologist gave me the news, I wasn’t overly emotional,” Joe says. “I had an inkling it was something more than a viral infection or mono. My initial reaction was to get right into what I should do next.”
What did Joe wish he realized sooner in his ALL journey? His response again reminds me of another red thread among rare patient communities. Fourteen years ago, as a freshman in high school about to undergo several years of intense treatment, Joe says he didn’t fully appreciate all the support opportunities, like live groups available through his local treatment center. Community is critical to anyone facing a health condition. However, through our work we’ve learned that the rarer the condition, the greater the need for connection and sharing through community.
Joe can attest. While he was in remission within a year, full treatment protocols required he complete 3.5 years of treatment. This led us to chat about how the need for support extends well beyond the patient, especially in the case of childhood cancer. Joe says that often, his own strength kept his parents and younger sister strong. He goes on to say he often felt like the adult in the room when surrounded by other much younger patients, which is an untimely position for teens and adolescent young adults to concede with. What he’s pointed out so eloquently is the importance of supporting one’s support networks and their unique perspectives, concerns, and fears as they stand beside their loved one on a harrowing and unpredictable journey.
Despite many efforts, there remains a lack of awareness that pediatric cancer is a rare condition. A few years ago on Rare Disease Day, we had the opportunity to speak with Kim Buff, Founder and Executive Director of Momcology. She explained that, “People don’t necessarily think of pediatric cancer as rare even though the numbers dictate they should. I think there is a tendency to group all cancers and childhood diseases into larger buckets instead of considering the needs in the context of specific rare conditions. For example, how the trajectory of the childhood cancer experience impacts future adult life when or if survivorship is achieved. There remains an opportunity for greater awareness on how childhood cancer is vastly unique from adult cancers.” She went on to drive home the importance of community as integral to the advancement of advocacy around rare diseases. She spoke about how isolation isn’t rare in rare diseases and when someone feels alone, it is community that begins to negate those feelings.
Looking back, Joe says he should have taken greater advantage of support services but has grace for his younger self, a typical teenage boy who was more comfortable retreating at times. He goes on to say he wishes he realized sooner that there were support groups and patient advocacy groups available outside his treatment center. He notes his experience opened his eyes to the importance of advocacy, including funding pivotal research to develop life-changing treatments and providing him a platform to pay it forward by sharing his experience in the hope of helping others.
When Joe learned about the research the Leukemia & Lymphoma Society (LLS) was supporting and their many events, he did get involved. His high school formed a team in honor of him to fundraise for the “Light the Night” walk. The “Marzella Members” went on to raise over $13,000. His senior year, he was able to lead his school as team captain. Over 70 students, faculty, family, and friends came out to support him. He was determined to participate, walking on crutches for the entire two miles around Verona Park in New Jersey. Their team was one of the top 3 fundraisers for the Family and Friends Division of New Jersey that year, raising over $18,500. To this day, Joe remains actively involved in the LLS North Jersey Student Visionaries of The Year Campaign as a Leadership Team member, supporting the annual fundraising of over $1.2 million.
When chatting about how surviving cancer changed his outlook on life, he takes a little bit of an uneasy and deep breath that tells me instantly there is no single or straight answer to this question. He responds thoughtfully with, “In so many ways. I have a different perspective. I’m more mellow. Every day is an opportunity. I pay attention to small things that most people take for granted; small things make a big difference.” Then, as if trying to find the one thing that could summarize his experience, he says, “It was the best and worst thing to happen to me.”
He talks about his journey using adjectives like grueling, noting that regular treatments became the new norm, but several serious and life-threatening side effects marked many dark days. He spent several birthdays in the PICU but never gave up, stating very little came easy for him, even before his diagnosis. From academics to sports, the option to give up was never an option. This outlook and perseverance served him well and continues to serve him well today. He acknowledges there are things he had to leave behind like baseball, but he is more open to new experiences and has new passions.
To that end, I asked Joe what message he has for his younger self. He would say thank you for your strength and resilience and for always pushing forward but push harder to get out more and participate in more events. As I immediately follow with another unplanned question and ask if he is always this hard on himself, Joe reflects on his overall experience with empathy acknowledging that there were periods where he needed to completely focus on healing. It immediately occurs to me that as a supporter of cancer communities and an active fundraiser for LLS myself, his is a perspective I cannot fully understand. In Joe’s own words, every day is an opportunity and small things matter.
To close, I’d like to share an excerpt from Joe’s Eagles Fly for Leukemia essay that earned him a full scholarship to St. Joseph’s University:
During my treatments, I read Quiet Strength by the former NFL Coach Tony Dungy. His story of hardships, disappointments and triumph related so closely to me. His positive approach to life, even when everything seemed awful, was inspirational. I too have a quiet strength. Learning to embrace and accept what has happened to me, put me on a path to helping others as well. My life experiences with leukemia may have affected my health in a negative manner; yet, this experience has positively affected and shaped who I am today and who I will continue to be forever. I have a newfound confidence that will carry me through any challenge. Quiet strength, perseverance and confidence are all qualities I maintain today. Leukemia may have forced me to mature faster, yet I do not feel cheated; rather, I feel fortunate. Strong friendships developed that will last throughout my life. These obstacles have continued to guide me on a path full of gratitude for everything and everyone in my life. Cancer has clearly taught me and confirmed that God, family and friends are central in my life. I look forward to continuing my education and helping others who have been through a similar experience. Cancer has shown me firsthand that you can be devastated, but resilient at the same time.
The Eagles Fly for Leukemia scholarship aims to help childhood cancer patients and survivors achieve lifelong dreams. Joe honors this mission every day. He pursues his passions with zeal, from obtaining a master’s in clinical and translational research to being an avid baseball fan and card collector with a collection of over 50,000 cards, to spending time with those he loves. Joe continues to be well and help others and looks forward to even more exciting milestones like getting married this fall to his fiancé Marissa.
For friends and family reading this, please know the special place you hold in Joe’s heart for all your support. It is clear he is eternally grateful for his community—mentioning several friends, teachers, and family members that helped him through his journey.
I want to thank Joe for taking time to chat with me and sharing his story in honor of Rare Disease Day. His voice is helping drive awareness of the unique needs of childhood cancer survivors, his efforts continue to raise critical funds, and he is truly an inspiration to others.
Joseph Marzella, MSHS, CMPPTM, is Associate Account Director, Client Strategic Services at Lumanity. He joined the Lumanity family in July of 2018 and can be reached at joseph.marzella@lumanity.com.
