Retinoblastoma in D.C. Part 1: A Capital Weekend of Friendship, Community and Fun
Friday March 24, 2023
Over the weekend of March 10 – 12, 2023, 80 retinoblastoma patients, survivors and families from across the US East Coast enjoyed monuments and landmarks around Washington D.C. while making new friends in the retinoblastoma community. Bilateral Rb survivor and WE C Hope USA President and Founding Board Member, Marissa D. Gonzalez, recaps this eventful and emotional weekend in this two-part blog.
Please Note: this article includes two YouTube videos that may not play directly on our website. Both video panels include a link to view the short videos directly on our YouTube channel.
The sightseeing tour made its final stop at 1600 Pennsylvania Avenue, where our families bundled up against windy weather outside of the White House.
Party in the USA
With cherry blossoms beginning to bloom along the streets of Washington D.C., seeds were being planted at the Crystal City Marriott in Arlington, Virginia in early March 2023. These seeds were the beginning of life-long friendships among members of the retinoblastoma community at different stages in their cancer journey.
We were overwhelmed at the tremendous response to our Mid-Atlantic Rb Family Weekend, with 80 attendees who flew, drove and rode the train from 12 states, the District of Columbia, and even one amazing mother who flew from Singapore to join her daughter for the weekend.
We kicked off the event with a welcome dinner and wild dance party! As families mingled and began to get to know one another, they enjoyed a buffet dinner, a toy table with treats for the kids and of course dancing.
During the formal introductions, WE C Hope board members Clayonia Colbert Dorsey and Lisa Hester joined me in welcoming the group, which included large groups from Clayonia and Lisa’s families. I gave an overview of World Eye Cancer Hope USA’s activities including the One Retinoblastoma World conferences, our participation in this summer’s International Society of Ocular Oncology conference in Kenya and discussed my fundraiser in honor of 30 years being cancer free, with proceeds funding our regional family weekends.
Clayonia shared that 2017 was the first time she met another retinoblastoma survivor, at the One Rb World conference, in the very same hotel ballroom we were all gathered in that evening. “I met my tribe at that event and my life has not been the same since finding my people,” she revealed. Showing loads of support for Clayonia were her two children and their spouses, her grandchildren, sister, brother, and their families. Her wonderful husband, Neal, and her son, Duaeno, were hard at work spinning tunes as the evening DJ’s.
Neal said, “The DC event was my first exposure to what my wife has gained since finding this strong group of retinoblastoma survivors and families. I was proud to be part of the weekend’s support network! I was able to witness how everyone came together – from all different backgrounds; I also sensed an overwhelming calm or peace, that these families and/or their survivors were no longer alone. The love and joy was truly genuine throughout our entire time together!”
Lisa also recalled meeting her first group of Rb survivors at the same conference in 2017 as a mother of a newly diagnosed Rb patient. Lisa emotionally told the group, “If you have never attended a One Retinoblastoma World conference, you really need to. I was able to sit at the table with some of my son’s doctors and learn about their research and talk with them as an equal.” Lisa’s husband Ben, her Rb survivor Elijah and her other 7 children were all in attendance, and were incredibly helpful to the event execution.
We C Hope USA board members Lisa Hester, Marissa Gonzalez, and Clayonia Colbert-Dorsey at the Washington Monument.
7-year-old survivor, Isabel Porto, loved getting a Worry Eater stuffed animal, and poses at the Friday evening dance party.
Getting to Know Each Other
Each family then shared their retinoblastoma experience – an exercise that included many tears, hugs and created instant bonds.
Jonathan White remembered the challenges his family faced when now 13-year old son Shawn was diagnosed. Jonathan’s heartfelt introductions of his son, his daughter Phoenix and son Andrew, and his wife Christine made the room swell with emotion as he discussed how tough it is for him to talk about Shawn’s Rb journey – a sentiment many other parents could relate to.
16-year old survivor Shana from the Boston area shared her vision of starting a teen and young adult survivor group to offer a safe place for survivors to relate to each other’s experiences as they mature into young adults.
16-year-old survivor, Shana Moser, speaks at the Welcome Reception about her interest in forming a teen and young adult survivor support group.
The Maille gals, Charlotte, Emma and mom, Angela, get down on the dance floor at Friday’s welcome reception.
Philip Banks brought his daughters, 2-year old Anita and 4-year old Rb patient Mary to the event along with his parents, brother and twin nephews. As Philip held Mary in his arms during their introduction he remembered fighting to have her seen after noticing the white glow in her eye. Knowing something was wrong, he refused to leave the hospital until she was seen, and immediately diagnosed with retimoblastoma. The Banks family showed their support for Mary and illustrated how important family support is when going through treatment. Mary is one lucky little girl to have such wonderful people around her.
Rb dad Philip Banks introduces his family at Friday’s welcome dinner. His 4-year-old daughter, Mary, a current Rb patient, loved the weekend.
Adult survivor Emily Conta was excited to finally meet another retinoblastoma survivor. She traveled to D.C. from Wisconsin with her two children to seek a community she had never had. Her fellow adult survivors welcomed her to the club with open arms and hearts.
Melinda Mahoney and her daughter Nikki attended WE C Hope USA’s Midwest Rb Family Weekend in July 2022 in Chicago. Similar to Emily, Melinda had never met another survivor and was so impacted by the experience that they both joined us again in D.C., and plan on attending the One Rb World conference in Hawaii in 2024.
Following introductions we turned up the volume, busted out the glow necklaces and adults and kids alike had a great time on the dance floor!
Kids and adults alike had a blast dancing at Friday evening’s welcome reception.
Double Decker Fun in the Capital
Saturday morning brought chilly but sunny weather as our group boarded our own private double decker red sightseeing tour bus complete with a fantastic live guide. We noshed on bagel sandwiches, juice and coffee as we set out across the Potomac to our first stop, The Washington Monument.
9-year-old bilateral survivor Elijah Hester channels his inner Iron Man.
First stop on the sightseeing bus excursion: the iconic Washington Monument.
A poignant stop along our tour was at the Dr. Martin Luth King Jr Memorial, where our Rb patients and survivors took a photo with Dr. King. Mom Nellie Jaikaran was pleasantly surprised that her 6-year old survivor son, Robin, opted to take part in the retinoblastoma photo, as it is tough for him to open up about his cancer story.
Nellie shared that Robin was not looking forward to the weekend since its focus was on retinoblastoma, but she and her husband, Chris, were so excited that Robin and his sister, Libby, had fun.
The apprehension of talking about one’s retinoblastoma experience is common in both children and adults, and I was the same way as a child, so it warms my heart that Robin came to identify our weekend as a fun outing and was able to simply be a kid with fellow young Rb patients and survivors.
The retinoblastoma survivors in the group gather for a photo at the Dr. Martin Luther King Jr. Memorial.
Our tour bus wound through the streets of D.C. allowing us to disembark at the Lincoln Memorial, the Korean War Veterans Memorial, the FDR Memorial and our final stop was The White House. Guests quizzed secret service members for top secret info (denied!) as everyone took in the expansive lawn and front portico of 1600 Pennsylvania Avenue.
As the tour ended it was an opportunity to reflect on the first part of our weekend, not only the sightseeing and dancing, but the relationships that were forming. Parents of newly diagnosed little ones conversed with adult survivors and saw firsthand that their kids were going to be OK. Grandparents, cousins, aunts and uncles fellowshipped with other family members about their vital roles in a family’s Rb treatment and beyond.
Children of adult survivors witnessed their parents lives evolving as they were embraced by others who have walked a similar course in life. Siblings bonded over the complicated role brothers and sisters play in an Rb journey. Young Rb patients were able to simply be kids alongside others with prosthetic eyes, glasses and the shared knowledge of this complex disease.
I close part one of this weekend recap with five wonderful testimonials from attendees.
Julia Kubica, mom of newly diagnosed Victoria, reflects on their 2023 Rb diagnosis, enucleation, and the importance of finding this Rb community as they walk through this cancer journey.
Philip Banks and his four-year-old daughter, Mary, brought their extended support group to our Mid Atlantic #retinoblastoma family weekend, including Mary’s younger sister Anita, grandparents, uncle, and twin cousins. The Banks family reminded us how important family support is when living with an Rb diagnosis, and it was beautiful to watch them continue to untie for Mary. In this video father and daughter reflect on the weekend’s fun.
Jennifer Ross, mom to 8-year-old Rb survivor Marshall, shares her gratitude at finding a Rb community where other children have experienced similar journeys as her son has.
9-year-old survivor Kate Cahill especially enjoyed the double-decker bus sightseeing tour of monuments and landmarks with other Rb families.
Dana Mackey, sibling of an adult Rb survivor, reflects on the family weekend while at the Kennedy Center.
Read Part Two of our Weekend Recap
The fun continued throughout our Mid-Atlantic Rb Family Weekend as our families took on rock climbing, explored the Kennedy Center, and formed vital friendships.
Retinoblastoma in D.C. Part 2: A Capital Weekend of Memory-Making and Community Building.
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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.
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