Thursday November 17, 2022
In-person contact with other families and survivors affected by childhood eye cancer is life-changing. On November 5th, World Eye Cancer Hope USA hosted 80 retinoblastoma community members for a picnic party in glorious fall sunshine. Marissa D. Gonzalez, bilateral Rb survivor, and President and founding board member of WE C Hope USA, shares highlights from the day of sunshine and smiles.
Like all children, survivors, and parents who join our Family Days, Angel is surrounded by the power of his extended family’s love and care. “Extended family” includes both relatives and close-knit retinoblastoma community!
On Saturday, November 5, 2022 in Los Alamitos, California, current patients, survivors, friends and family members gathered to celebrate our Southern California retinoblastoma community.
With 80 attendees, including 13 Rb warriors in various stages of treatment or survivorship, the Little Cottonwood Park was a loud, boisterous and fun setting for this fifth annual event. Many families had attended previous events, and were returning for a second, third or fourth time, including the Espinosa Family and their Rb kiddo, Angel. Around 20 members of his extended family came along to show their support for his cancer journey.
For others, like survivor Indy McLeod and his parents, this was their first time attending our Family Day. 11-year old Indy began his retinoblastoma treatments in Vancouver, Canada, before moving to Portland, Oregon, and then to the Los Angeles area. He was apprehensive at first about being around so many people in the Rb community, but he quickly warmed up, even speaking about himself during the introductions.
Marissa with 11-year old Indy and his mother Dawn.
Lindsey Johnson and her 9-year old bilateral survivor daughter Evie have been involved with World Eye Cancer Hope USA since soon after its inception and Evie’s diagnosis. In this video, both mother and daughter speak about their time at Family Day, and the importance of having a community.
WE C Hope USA’s Director of Communication, Kristen Small, noted:
“It’s been wonderful watching this event grow over the past few years. Seeing new people and returning attendees chatting while the kids run around and play together just reaffirms how valuable these events are. I feel honored to hear everyone’s story, to see extended families attend in support of a loved one, and to watch the kids get to just be kids and have fun. It’s a truly memorable experience.”
WE C Hope USA Board Members Lisa Hester, Marissa Gonzalez and Kristen Small.
The day’s festivities included a Disney themed moon bounce, giant versions of Connect Four and Jenga, freshly made popcorn, fun face masks, buckets of toys the kids could delve into and take home, WE C Hope swag bags and a delicious lunch. A playground and rock climbing wall rounded out our wonderful activities at the park.
We paused during the event for formal announcements and introductions. I shared about WE C Hope’s recent Midwest Family Weekend, our Texas Family Weekend coming up on December 2 – 4, and our Mid-Atlantic Family Weekend planned for March 2023. Plus the One Retinoblastoma World conferences in Ottawa, Canada in October 2023, and Honolulu, Hawaii in October 2024.
The central focus of our shaded picnic area, where families gathered for lunch and introductions.
Plenty of shaded seating created a relaxed atmosphere with lots of opportunity to mingle and chat.
Yummy lunch items included Subway sandwiches, fried chicken, chips, fruit salad and a selection of cookies and crackers.
We extended Hallowe’en with our fun mask play station, which proved popular with kids and adults alike.
During the introductions, each family and survivor had the opportunity to share their Rb story, and many of the children shared their own status and story.
Isamar Campos, mother of 4-year old Celeste, was emotional when sharing this was her first in-person Family Day, having attended virtually during the pandemic. She said: “You are never prepared for this diagnosis, and knowing there is a community is so important”.
Mom Isamar, 4-year old Celeste and their family attended their first Family Day virtually during the pandemic.
The Chan Family shared daughter Ruby’s journey and experiences at Children’s Hospital Los Angeles (CHLA). “CHLA is the best place to be!” gushed Ruby’s mom, Nellie.
Parents Nellie and Michael Chan pose with daughter Ruby, their Rb survivor, and super-sibling Rock during lunch.
Kristy O’Malley shared her personal battle with retinoblastoma, noting that her mother also had the cancer, and her 7-year old son, Evan, is also a survivor and doing great.
Rb survivors, mother Kristy and son Evan, with dad Christopher and super-sibling brother, Sean.
Rb mom Heather Fox Busquets attended with her mother and her 9-year old bilateral survivor Helena. Heather recalled meeting my mother, Marty Gonzalez, at Dr. A. Linn Murphree’s retirement party in 2013. She said:
“Helena had just been diagnosed, and I had no idea what the future held for her. I remember Marty telling me, ‘She is going to be OK’. I have never forgotten that, and 9 years later here we are, and we are OK.”
Helena was excited to meet others with prosthetic eyes, and was inquisitive about other kids’ vision status. I shared with her my own vision struggles, and am so thankful that she felt comfortable asking questions and openly discussing vision and prosthetic eyes with other attendees.
We were thrilled to have three WE C Hope USA board members in attendance: myself, Kristen and Rb mom Lisa Hester. The Hester clan rallied around survivor Elijah during his treatment, and continue to support him as he struggles with neuropathy. This nerve damage can occur after chemotherapy or radiotherapy, causing weakness, numbness, and pain, and sometimes impairing body functions like digestion and circulation.
Lisa shared with the group:
“I found WE C Hope by attending the One Retinoblastoma World conference in Washington D.C. in 2017, and this conference continues to be a wealth of information for Rb families around the world. I am so honored to serve on the board of this organization, and see first-hand the impact that our Southern California event has on families every year. Even the two years that the event was held virtually created an opportunity to connect with other families.”
Mom Tara Crow agreed:
“I highly encourage everyone to attend in-person or virtually each One Rb World conference because there are so many things the medical professionals do not tell you about when your child is diagnosed. I had no idea this cancer would become a lifelong part of our lives, I did not know my son would need survivorship care, mental health care, and help with anxiety due to his Rb. One Rb World helps prepare me to better support and advocate for my son.”
We were delighted to have a special guest join us for all of the announcements and introductions; CHLA Rb ocular oncologist Dr. Jesse L. Berry, whose 3-year old was sadly home sick and couldn’t join in the fun. Dr. Berry said hello to the group, and listened close as each family shared their experiences.
The Espinosa Family showed their support for Angel by wearing matching shirts that read, “I Wear Gold for Angel Salvador, Retinoblastoma Awareness.” Angel’s mother, Maria, has been a steadfast supporter of our Southern CA Family Day, bringing dozens of family members through the years, along with excellent fried chicken for the group!
Above: Rb survivor Angel’s extended family.
Below: Angel’s mother, Maria, explains what Family Day means to her.
Two year old Charlotte Cox and her mother, Kat, enjoyed the playground and being with others from the So Cal area who have walked a similar path. During introductions, Kat described the feeling of relief she had once the difficult decision to remove her daughter’s eye was made; she could focus solely on the rest of Charlotte’s Rb and healthcare journey. Little Charlotte was dressed to the nines, and cried when it came time to leave the park, as she was having such great fun!
2-year old Charlotte and her mother Kat had a blast on the playground, and little Charlotte did not want to leave!
11-year old Hanna Artz moved to the Los Angeles area three years ago. At our Family Day, she and her father, Andrew, were finally able to gain a local support network. They even set up a future play date with Helena!
Many of the children were so open about their prosthetic eyes, and having cancer; it surprised me! Sweet 7-year old Bryce Hernandez was so thrilled to be at Family Day. When I met him he excitedly told me, “I had cancer, and I have a prosthetic eye!” I replied that I’d also had cancer and then high-fived and hugged him. The thought of me as a child being able to tell someone that… It’s something I never could have done. He was so happy to meet other young cancer patients and survivors.
Just knowing how isolating the retinoblastoma journey is for so many kids, parents and survivors makes me sad. I walked that road for two decades, as did my mother, before I found any type of support network. To now witness children and families breaking bread together, laughing and crying together, is nothing short of a miracle.
Bilateral Rb survivor Bryce Hernandez and his family enjoyed the afternoon.
Personally, this day is one of the events I am most proud of. As a professional event planner, I have planned events for thousands of people; events for celebrities, dignitaries, and everything in between. However, it is the impact this event continues to have on children, families, and adult survivors that touches my heart so deeply, and leaves me lost for words.
Listening to the laughter of Rb kids and non-Rb kids playing in the moon bounce, blowing bubbles and eating popcorn together brings me to tears. I have no idea how different my life would be if social media, support groups, child-life specialists and events like this had existed during my treatment and the first decade of my survivorship journey. While I cannot dwell on that, I can make sure that such resources are readily available to the retinoblastoma community today, both here in So Cal and around the country.
In celebration of being cancer free for 30 years, I launched a fundraiser with the goal of raising $15,000 for WE C Hope USA to produce regional family and survivor events, and to develop retinoblastoma support packs for families at diagnosis and in treatment.
You can read more about my Rb journey in these two recent blog posts:
(March 15, 2022)
(October 24, 2022)
To contribute financially and help us ensure these wonderful family events continue, please visit my 30th Cancerversary Fundraiser.
Read more about our other recent and future events:
Retinoblastoma is not a club any of us wants to be in – it is not something I would wish on anyone. We all deal with the reality of the disease and its aftermath in different ways, and I think I’ve tried just about every way of coping. But I firmly believe in my heart that I was chosen to have a genetic mutation that resulted in retinoblastoma in order to help other families who share in this path.
It can be excruciatingly challenging at times to learn of newly diagnosed babies, children who relapse with life threatening cancer after eye-salvage therapy, and adult survivors with late effects of radiation, and of our shared Rb1 gene complications. It can also bring me to my knees with gratitude that I have decided to make being an advocate, an ally and a warrior a huge part of my life. This Family Day more than any other really drove home what an honor it is to to play a role in so many lives, and hopefully to make their journey with retinoblastoma a little bit easier.
Having a support network is vital to any cancer journey. As I introduced some of my amazing friends and their children who were there to support me, my mother and this organization, my mother summed up her journey with these succinct and poignant words:
“I am so happy for all of you mothers, fathers, grandparents and family members that you have a support network like this, because when Marissa had Rb, there was nothing like this. And I can tell you all that you are going to heaven, because you have already been to h#%^.
Please help us to create more connections and stronger circles of care across the USA!
In-person support for patients, survivors and families is vital during and long after treatment for retinoblastoma. WE C Hope is the only organization providing support specifically tailored to our community across the USA.
Our events are funded by generous donations from the retinoblastoma community and our friends and supporters. Your financial gift will ensure we can plan well and continue reaching, connecting, and supporting more families and survivors living with childhood eye cancer and its effects across the USA. Thank you so much!
If you would like to discuss a company matching donation, or have questions, please email Marissa at marissa(at)wechope(.)org.
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.