Monday December 4th, 2023
Childhood eye cancer and its lifelong impacts can be a lonely, overwhelming experience. Connecting with others who understand is a healing balm for many. On November 4th, nearly 100 young patients, survivors, family and friends gathered to celebrate and support the amazing Rb community in Southern California. Marissa D. Gonzalez, bilateral Rb survivor and WE C Hope USA President, shares highlights from another delightful Family Day.
An overview of the event site setup at Little Cottonwood Park.
On the first Saturday of November 2023, WE C Hope USA hosted the 6th annual Southern California Retinoblastoma Family Day, bringing together almost 100 members of our local Rb community. With a crisp fall breeze in the air, we returned to Little Cottonwood Park in Los Alamitos, CA, where we enjoyed a fabulous day met last year. The stage was set with a bounce house, inflatable obstacle course, giant Jenga, giant Connect Four, skee ball game, and plenty of room for children and adults to run around in the grass.
Supporting Rb Children and Families
The Espinosa family has attended every So Cal family event since the inaugural one in 2018, including two virtual events during the pandemic. Angel Espinosa’s extended family attends each year with siblings, grandparents, cousins, aunts and uncles among his fan club. The Espinosa family are always a bright light at this event, and we look forward to continuing to watch Angel grow and succeed. And each year they bring the best fried chicken for the entire party!
The Espinosa family have been attending Family Day since its inception in 2018, with their Rb survivor, Angel. This year, 22 family members surrounded Angel and our entire Rb community with support, and supplied us all with the best fried chicken in town!
Three-year old Charlotte made the most of the afternoon, jumping from the bounce house to the obstacle course, making new friends along the way. Her mom, Cat, and grandmother, Mimi, enjoyed their second family day, and Cat expressed her gratitude for the Rb community:
“Thank you Marissa Gonzalez and World Eye Cancer Hope for another wonderful day! Charlotte had such a great time in the bounce house and obstacle course, along with all the other fun! It was great to connect with so many wonderful families and for Charlotte to meet friends who also have a special eye. Thank you, thank you, thank you! We look forward to the next one!”
Rb mom Cat Paul watches while her mother, Mimi, and daughter, Charlotte, play in the bounce house.
Another second-year attendee was Bryce Hernandez and his family. A 9-year-old bilateral survivor, Bryce is full of energy, and his excitement was palpable. His father Ruben opened up about the emotional journey of a pediatric cancer diagnosis, and the importance of connecting with others who have walked a similar path:
“We really love this event because of the community that’s here. Everybody shares their stories, everybody has the same pain that we experienced, we all get to talk about it and meet new people.”.
Dad Ruben and his son Bryce, share their enthusiasm for attending the 2023 SoCal Rb Family Day.
During the introduction portion of the afternoon, each family had the opportunity to introduce themselves and their connection to retinoblastoma. This also offered the three WE C Hope USA board members in attendance time to update the group on the organization’s busy year.
Board member and Rb mom, Lisa Hester, excitedly told folks about the One Retinoblastoma World conference in Hawaii next October, and encouraged families to join this unique global conference coming to the Pacific:
“It was at the 2017 One Rb World conference in Washington D.C. that I first encountered World Eye Cancer Hope and the tremendous power of this conference. My son’s doctors were in attendance as well as top pediatric oncologists from around the world.
I felt empowered as a parent to participate in conversations because the format of this conference puts every attendee on a level playing field. Doctors are referred to by their first name, survivors tell their stories and inform medical professionals how and what they need to shape their healthcare journey, and parents engage in breakout sessions with physicians from a multitude of countries.
I can’t wait to take my Rb survivor son, Elijah, and his siblings to Hawaii so that he can participate in the child life program that will run for the entirety of the conference and incorporates medical play.”
WE C Hope USA Board Members (Left to right) Lisa Hester, Kristen Small and Marissa Gonzalez show off the new banner and their custom WE C Hope shirts. These tops, other shirts, hoodies, caps, tote bags, mugs and more merch are available on our TeePublic store.
Director of Communications, Kristen Small, modeled her custom t-shirt purchased from our TeePublic online store and explained how guests can order their own customized WE C Hope and Know the Glow items. A board member since 2017, Kristen expressed her gratitude to the families in attendance, saying:
“It is because of your wonderful families that we organize family events, and we cannot thank you enough for attending year after year. It is wonderful to reconnect with families like the Johnsons, Campos-Rodriguezes and Solorio-Rodriguezes, and see how your little Rb warriors are growing and flourishing. We always love bringing new families into our community, so thank you all for being part of this great day.”
I highlighted WE C Hope USA’s participation at the first-ever International Society of Ocular Oncology (ISOO) conference focused on Africa. Learning first-hand about the immense challenges of pediatric oncology presents in Africa was both heartbreaking and life-changing.
Before joining the conference in Mombasa, Kenya, back in August|, I visited the eye ward at Kenyatta National Hospital in Nairobi. My visit, and meeting children who are in hospice for retinoblastoma, will stay in my heart forever. Being at the hospital opened my eyes to the reality of pediatric oncology in developing countries like Kenya, and the importance of global collaboration to improve outcomes for African children.
Representing our wonderful charity at ISOO Africa, and our growing partnerships gives me so much hope for the future of eye care and retinoblastoma in Africa. WE C Hope USA is already aiding early detection through our new partnership with the Arclight ophthalmoscope and Know the Glow, and we will continue to support our colleagues across Africa and around the world.
It was wonderful to welcome new families to the event this year, including the Kish crew. Keith and his brother, Daniel, are both adult survivors. Keith attended with his wife, Robin, and daughter, Riley. Keith and I discussed the importance of survivorship follow-up care, and bonded over both being seen at the Survivorship Clinic at the USC Norris Comprehensive Cancer Center.
Adult survivor, Keith Kish, attends his first SoCal Family Day with his wife and daughter.
Another first-time group was the Kaderka family, whose Rb survivor son, Travis, was on vacation with his grandparents during the event. To support him and meet fellow parents and siblings, Tiffany and Justin brought their daughter, Amelia. We look forward to meeting Travis next year!
Rb parents Tiffany and Justin Kaderka, and their daughter Amelia, enjoy their first Family Day event.
Alex Paulos, who has volunteered twice at this event, recounts her interactions with both children and parents:
“Meeting so many new families who are still on their cancer journey, or just out of it, is so inspiring. Their children are such bright souls, and it never ceases to amaze me how resilient they are.”
Jeannie Balms attended the first So Cal Day in 2018, and returned this year. She is an adult survivor of bilateral retinoblastoma who was treated at Children’s Hospital Los Angeles (CHLA). She recalled having very caring nurses and doctors at CHLA who made her time in the hospital positive rather than traumatic. She loves to snowboard and may soon join WE C Hope again at our Denver Rb Family Weekend in February.
Adult Rb survivor, Jeanne Balmes, attended the first Family Day in 2018. She returned this year to meet more families and offer guidance as a survivor.
The Fox-Busquets clan have attended three years in a row, and survivor Helena beams with confidence when telling people she is a cancer survivor. Helena was accompanied by her mother, aunt and grandmother, and their family support for Helena showcases how vital it is to have an extended support system for a child with cancer and their immediate family.
The mom of a 9-year-old boy diagnosed with bilateral Rb, who wishes to remain anonymous, became emotional when reflecting on her son’s journey:
“I never thought I would have a child who is blind in one eye, who struggles in school and who began therapy at age 6. Retinoblastoma has infiltrated every part of our life. These community gatherings show him there are other children with vision loss who have also survived Rb.”
Dressed in yellow princess attire, 4-year-old Isla Huffman and her 2-year-old brother, Declean, loved all of the activities and played nonstop. In her video, mom Erin explains how attending the SoCal Family Day in 2019, when Isla was only 1-month post diagnosis, was crucial to their cancer journey.
Mom, Erin, and 4-year-old Rb survivor, Isla reminisce about Isla’s cancer journey and how attending the SoCal Family Day shortly after Isla’s diagnosis benefitted them.
Leading the Macleod Family, 11-year-old survivor Iain brought his dog along with his parents, Dawn and Alastair. At last year’s event, Iain was reticent to mingle, and found it difficult to speak about his cancer story. What a difference a year makes! It was admirable to see how he engaged with the group, even using humor amongst his fellow survivors to bond over their journeys. We have a comedian on our hands!
The Macleod family, including parents Alastair and Dawn and their 11-year-old Rb survivor, Iain, attend their second SoCal Rb Family Day with their pup, Luna.
The 6th annual Southern California Retinoblastoma Family Day was another huge success! With almost 100 attendees, the connections formed over the years continue to grow stronger as new families are welcomed into the fold.
We are so proud of this event’s longevity, and thankful to our wonderful Rb community in Southern California.
We hope to see everyone at One Retinoblastoma World 2024 in Hawaii!
About the Author
Marissa Gonzalez resides in Southern California and is an event director. She is a founding board member, and current President of World Eye Cancer Hope USA, and was Event Chair for the One Retinoblastoma World Conference in 2017 and 2021. In her downtime, Marissa enjoys travelling and going to Disneyland.