By Lauren Spiker
“If you’ve learned anything from me through all of this, do something with it. Something to make a difference, to make things better.”
When your dying, 19-year-old daughter challenges you with these words, there is only one response.
“I promise.”
Little could I have imagined how that late night conversation would change the direction of my life.
Today, 13thirty Cancer Connect, the organization I established after Melissa’s death 24 years ago, is a nonprofit leader in adolescent and young adult (AYA) oncology. Our work to support the nearly 90,000 AYAs diagnosed with cancer each year in the United States takes center stage in April — AYA Cancer Awareness Month.
AYAs, lost in the great divide between pediatric and adult medicine, continue to experience serious gaps in relevant medical and supportive services.
Relative to young children and older adults, AYAs have seen less improvement in survival and are at high risk for recurrence, secondary cancers and complicated, long-term late effects. Because their unique challenges continue to be inadequately addressed, they suffer emotional and psychological distress, social isolation, diminished education and career opportunities and serious financial hardship.
13thirty Cancer Connect plays an important role in helping AYAs meet these challenges and successfully transition from cancer patient to, hopefully, healthy survivor.
Through a comprehensive array of essential resources, we help AYAs with cancer, aged 13-39, live their very best lives throughout the entire continuum of their cancer experience. Our peer support programs provide social and emotional reprieve from the debilitating effects of cancer while helping develop life-long health maintenance behaviors and coping strategies. Workshops for the healthcare teams who care for them and in-service presentations to school mental health teams, administrators and faculty are designed to help providers better address their needs.
Recent data shows the incidence of early-onset cancer is rising at an alarming rate, with cancer in young adults, aged 30-39, growing by the largest percentage.
This increasing cancer burden among AYAs has important medical, societal and economic implications and we must pay attention. This vulnerable segment of the cancer population has been overlooked for too long and they deserve better.
For 24 years, with the help of many, I’ve done my best to keep my promise but much more needs to be done. Together, we can keep “making a difference and making things better.”
Learn more at 13thirty.org.
Lauren Spiker is the founder and executive director of 13thirty Cancer Connect, originally named Melissa’s Living Legacy Teen Cancer Foundation. In addition to her work at 13thirty Cancer Connect, Spiker serves on the board of the national AYA Cancer Coalition, leads the CNY Cancer Alliance and is active in many community and healthcare collaborations.