Hawaii Says “ALOHA” to the 7th One Rb World Conference and Global Retinoblastoma Community

Sassy Outwater-Wright is an Interfaith Clinical Care Chaplain and Certified Patient Advocate from Salem, Massachusetts, as well as a survivor of bilateral retinoblastoma and multiple second cancers. Unable to travel due to recent chemotherapy, she delivered a very insightful virtual keynote address about living with cancer and its effects, striking a chord with many of us.

She highlighted the importance of patients, caregivers, and clinicians recognizing the individual’s capacity to take in information, manage situations, and complete daily tasks. She reminded everyone that we need to be compassionate with ourselves and others in navigating the cancer experience step by step, asking what each person uniquely needs to get through this moment or step in the process, staying mindful to how we can support the journey, and being proactive to ease distress.  Sometimes being proactive means saying “no” with grace to things that aren’t a priority to preserve one’s energy.

Following the keynote, our Survivorship Care panel kicked off with David Freyer, D.O., M.S. David is Professor of Clinical Pediatrics at the USC Norris Comprehensive Cancer Center in Los Angeles, and Director of the Survivorship and Supportive Care Program at Children’s Hospital Los Angeles (CHLA). He outlined the work done at both the CHLA and Norris Cancer Survivorship Clinics, and how each multi-disciplinary team focuses on the different needs of survivors.

He then expertly guided audience members through the risks of second primary cancer for those carrying the RB1 genetic mutation.  He highlighted the critical need to take ownership of your medical history as an adult, and learn about cancers like melanoma (skin cancer), sarcomas (soft tissue cancer), and osteosarcoma (bone cancer) that RB1 mutation carriers have a higher risk for.

Alongside the physical benefits of these centers, David emphasized the importance of psychosocial support and lifelong survivorship care for both child and adult survivors.

Social worker Susan Pultman, M.Ed. from Children’s Hospital of Philadelphia tackled the strains and benefits of navigating a pediatric cancer diagnosis in a social media world. She highlighted that although it can be an emotional outlet during stressful times and a way to connect parents and survivors around the world, social media can also lead to misinformation, bullying, and exposure to poor/different outcomes in Rb treatment. She provided alternative ways of safely connecting Rb survivors and families, including peer mentorship programs, camps/retreats, and facilitated live support groups/gatherings organized by social workers.

Zali O’Dea flew in from Australia to present about grief after eye loss, something many at this conference have experienced. As patients, parents, siblings, and adult survivors, grief about the lost eye can be complex and lifelong. Zali addressed many aspects of this experience rarely discussed in a powerful and healing exploration of life after eye loss, both for those with and without prosthetic eyes.

Parents of four-year-old bilateral survivor, Charlotte, valued learning more about both genetics and survivorship, saying,

“As parents of a young survivor, or thriver, it was impactful to hear the genetics and survivorship panels at One Rb World during the family-focused day. We learned the importance of getting a copy of Charlotte’s genetic test and how important it can be for her future. We also learned it’s never too early to start looking into survivorship programs for Charlotte. Going to this conference helped us see how connecting with the right people will benefit her future, and the future of our Rb community. Connecting with others, from all ages, and hearing stories from both survivors and parents was life changing.”