Retinoblastoma in D.C. Part 2: A Capital Weekend of Memory-Making and Community Building.
Monday April 10, 2023
The fun continued throughout the Mid-Atlantic Retinoblastoma Family Weekend in early March 2023. In the second half of our weekend recap, our families take on rock climbing, explore the Kennedy Center, and continue to form vital friendships. Bilateral Rb survivor, WE C Hope USA President and Founding Board Member, Marissa D. Gonzalez, shares more highlights from this eventful and emotional weekend.
Read about the first part of our event in part one of this blog
Our guests enjoyed breakfast and an informative tour of the Kennedy Center.
Climbing to New Heights
The Mid-Atlantic Rb Family Weekend took place March 10-12, 2023 in Washington D.C., It kicked off with a welcome dinner and festive dance party on Friday evening, followed by a chilly but sunny private sightseeing tour.
Read about the first part of our event in part one of this blog.
The second half of our weekend involved a new challenge for many of our guests – indoor rock climbing. While munching on yummy Italian food, our group took over the Movement Crystal City Rock Climbing Gym. Managers Nick Gava and Brady Smith pulled out all the stops to make WE C Hope feel right at home, and we set a record for the largest group event ever hosted at that location. The Movement team went above and beyond to teach kids and adults the safety instructions then guide them up climbing walls of all difficulty levels.
This event was empowering for some of our younger climbers, as there were some levels of fear and insecurity at this scary new physical activity. Some tears were shed, but with a bit of patience and encouragement our younger ones overcame their fears and many soon looked like Spiderman scaling the walls.
One particularly impactful moment came when 8-year-old Elijah decided to give climbing a shot after watching his siblings and friends. Elijah suffers from neuropathy and has had many complications from his retinoblastoma treatments. His mom and WE C Hope USA board member, Lisa Hester, grabbed me in a tight hug with tears streaming down her face and said, “I will remember this moment for the rest of my life.”
She explained “Elijah rarely gets the opportunity to do normal childhood activities and is often sitting on the sidelines. He wanted to try rock climbing but did not make it very far up the wall and began to get frustrated and give up. But his instructor got on the floor with him, calmed him down, and convinced him to try again. With her assistance, and with so many new friends cheering him on, I watched my son rock climb. I never get to see him do normal kid activities and I am so overwhelmed that I could finally watch him having fun alongside all the other children.”
A huge part of the success of rock climbing was the sense of kinship. Families traveled from 12 states, the District of Columbia, and even Singapore to attend this event, and observing the many groups of people helping one another, yelling words of encouragement, and seeing them become one big family was extraordinary. For that was the goal of the weekend: to bring people of all different backgrounds together as a united group as we all travel down this road of pediatric cancer and survivorship.
Adult survivor, Melinda Mahoney, and her adult daughter, Nikki, joined WE C Hope in July for our Mid-West Family Weekend and couldn’t wait to continue relationship-building in D.C. After scaling the rock climbing walls, Melinda told Clayonia and me, “We couldn’t wait to connect with everyone again in D.C.
As anticipated, it was another wonderful weekend spent with other Rb survivors and their families. It’s great to see the support the young survivors have and have the ability to connect with other adult survivors. I’m so grateful that my daughter was able to join me on these weekend excursions and also grateful for the opportunity to meet the wonderful and supportive family members of other survivors.”
Rock climbing served as a catalyst for our patients and survivors to not only physically scale new heights, but mentally and emotionally as well.
Guests enjoyed scaling the walls at Movement Rock Climbing Gym.
WE C Hope at The Kennedy Center
The John F. Kennedy Center for the Performing Arts (TKC) opened its doors in 1971 and today is one of the premiere centers for theatre, opera, and dance in the country. The wonderful staff set our group up with three small private tours led by upbeat volunteer guides.
We noshed on bagels, schmear, and of course coffee, at the Center’s terrace atrium, which boasted stunning views of the TKC campus.
Relationships continued to bloom amongst our geographically diverse families. Kelly Moh, a 22-year old bilateral survivor, is a current senior at the University of Pennsylvania who plans to continue her education with a master’s in occupational therapy. Kelly attended the weekend with her mom Peggy who flew in all the way from Singapore to be with her daughter. The three of us reminisced about her physician, the late Dr. A. Linn Murphree who practiced out of Children’s Hospital Los Angeles.
College senior Kelly Moh and her mom Peggy strike a pose at the Kennedy Center during Sunday’s breakfast.
A beautiful friendship was born between adult survivor DJ Burzon and 9-year-old survivor Kate Cahill and her mom Amy, who flew in from Kentucky. DJ assured Amy that Kate could always call on him for advice about prosthetic eyes, being different from other children, and that he was a safe place to turn for questions her family might not be able to answer about the retinoblastoma journey.
DJ expressed the impact of finally coming face to face with a fellow Rb survivor, eloquently saying via Facebook, “This weekend, I attended a Retinoblastoma survivor gathering in Washington, D.C. Before this weekend I had met two other people with fake eyes. My ocularist and a local woman who had lost hers in an accident. But in my youth, I never had peers, I never knew someone I could sit and talk with about things I was going through and have them truly understand. Because of this I greatly underestimated the power of human connection, but that changed this weekend.
“I met 15 other people who truly could understand a huge part of my life for the first time, and I feel so amazing. From a little one who had their eye removed in January to a grandmother. So many different lives, at so many stages, who no longer have to go it alone. We finally have our people.”
Rb survivor, DJ Burzon, made a new friend in 9-year-old survivor Kate, and her mom Amy Cahill.
Alina Comeau—who has been cancer free for 34 years (yay!)—brought her husband Kevin, son Castor, and friend Jesse to D.C. from Minnesota. Alina and Kevin founded the non-profit Providing Prosthetics, which funds prosthetic eyes for humans and animals alike. Alina gave the group an overview of the organization, which does amazing work. Alina is also ready to say “Aloha” to Hawaii in 2024 for the One Retinoblastoma World conference.
The tour of The Kennedy Center proved to be educational and very interesting. We were even allowed to check out the Presidential Box, where Presidents have entertained dignitaries and celebrities alike for decades.
Rb survivor Alina Comeau, her husband Kevin, her son Castor, and their friend Jesse enjoying a convivial breakfast at the Kennedy Center.
Our formal program ended at The Kennedy Center, where we gathered in the Grand Foyer with a 3-ton bust of JFK as the background for our tearful goodbyes. Hugs ensued as families expressed their appreciation for each other, exchanged contact information, and the kiddos ran around the expansive foyer telling us their favorite parts of the weekend. Isabel Porto loved the dance party, Kate Cahill thought the bus tour was great, and Mary Banks loved all of it!
Jennifer Ross, mom of 8-year-old survivor Marshall, reflects on her time in D.C. saying, “this is our first Rb event and it was more than we had expected. We loved every minute of it. We got to meet all kinds of families that have dealt with the same things that we have, and it was just a great place to relax and feel accepted and understood.”
3-year-old Victoria was diagnosed in January 2023, and her family has endured a whirlwind of emotions over the past 2 months. Mom, Julia, was thrilled at the timing of the Mid-Atlantic Family Weekend so her family could meet others in the retinoblastoma community. She said, “We’re just so happy we could be a part of this family, this bigger family. I have a feeling we’re going to know each other for a very long time, and I need you all, we need your support.”
Another recently diagnosed family in attendance was that of Charlotte Maille, whose diagnosis came in November 2022. Her mother, father, aunt, cousin, and two siblings traveled from Ohio and Michigan to join the event. At the conclusion of the weekend, her mom Angela became emotional when discussing the impact the weekend had on her:
“This is our first outing with the World Eye Cancer Hope group in Washington, D.C. and we thank you so much. It’s been a fabulous weekend; it’s been so nice meeting other people that Charlotte can relate to and we just thank you guys so much for doing this for us. It’s been just wonderful.”
Nikki Mahoney, whose mom, Melinda, is a survivor attended her second Rb Family Weekend and is grateful to be able to support her mom and her survivorship journey.
“This group holds such a special place in my heart, and even more importantly, a special place in my mom’s heart. Ever since I was young, my mom has talked very openly about her Rb story. It wasn’t until I grew up that I realized not all moms had an Rb story… quite frankly, my mom was the only mom with an Rb story.
“It wasn’t until I was 26 years old that I had the opportunity to meet someone else with a parent that had an Rb story. What makes this even more significant, this was the first time in my mom’s entire life that she was able to meet and connect with others over their shared experience with Rb.”
Dana Mackey, sister of unilateral survivor and We C Hope Board Member Clayonia, enjoyed meeting retinoblastoma families over the weekend. Dana, along with her parents and extended family, have watched Clayonia’s presence in the Rb community grow since she attended the 2017 One Rb World conference.
Dana said, “I am very excited to be able to have shared the weekend with everyone. I met a lot of wonderful families, I have heard some very amazing stories, and it is just so nice that everyone is able to come together and be able to be here in Washington, D.C. for the weekend.”
Our group thanks WE C Hope from the Kennedy Center.
Angela Maille, mom of recently diagnosed Charlotte, gets emotional recounting her daughter’s Rb journey and how meaningful it was to meet fellow survivors and families as they navigate Charlotte’s treatment.
Dominique, niece of Rb survivor Clayonia, expressed her gratitude in attending the family weekend.
7-year-old survivor Isabel Porto exudes excitement while sharing how much she loved the dance party alongside her mom, Natanya, and sister, Sofia.
Alina Comeau can’t wait for the One Retinoblastoma World conference in Hawaii.
Rb survivor DJ Burzon reminisces about his first ever Rb event.
A Monumental Weekend
As I stood in the parking lot of Union Station on Sunday afternoon and bid a fond farewell to my fellow board members Lisa Hester and Clayonia Colbert Dorsey, it finally hit me what the incredible WE C Hope USA board had just accomplished. The three of us stood crying and hugging each other and few words were exchanged – they did not need to be said as the emotions spoke for themselves.
We had a huge void over the weekend since Founding Board Member and Rb Mom, Lori Baños’ flight was cancelled and she was unable to travel from Iowa for the event. We missed her terribly but felt her with us in spirit (still not the same though.)
Executing four retinoblastoma family events over the past seven months, in Chicago, Southern California, Austin and D.C., we have had 200 attendees from 15 states, the District of Columbia and Singapore. When I set out last March to raise funds to host regional Rb events, I had no way of predicting that one year later our organization would have made such vital connections with 200 members of the Rb community.
Typing this blog, I still struggle to dictate how proud I am of WE C Hope USA and the fierce tribe of women that have been there every step of the way in the planning and execution of these events.
Lori Baños: You are an unstoppable force in the Rb world and such a role model to fellow parents struggling with an retinoblastoma diagnosis. I am so thankful to have been on this crazy ride with you by my side.
Clayonia Colbert Dorsey: You are my sister in life, and you changed all of our lives for the better when you first walked into the ballroom at the Crystal City Marriott for One Rb World 2017. Your tribe loves you.
Lisa Hester: You are the best cheerleader in the world! And one insanely awesome mama bear to Elijah and your other beautiful children.
A huge thank you to our board members, Kristen Small and Mark Billings, for all of your work on behalf of WE C Hope USA, you both are so appreciated, and we could not run this organization without you.
And to the founder of World Eye Cancer Hope, Abby White, in England. Your contributions to the global retinoblastoma community are immeasurable, and your presence and leadership are felt at every event here in the USA. I hold Rati close in my heart and hope that with each event we honor Rati and Daisy as the beautiful story behind our organization.
Thank you to all of these incredible board members.
It is my sincere hope that this generation of retinoblastoma patients and young survivors know that they have a community that supports them and is here for them. And that the adult survivors, who like me did not have social media, the internet or Facebook groups to turn to for support, know that we are a tribe and a family, and you are not alone. That parents and caregivers know fellow parents have your back, and many have been down this road already and are here to lend a hand or a shoulder to cry on.
And to extended family members and friends – you play a crucial role in the life of a cancer patient and survivor; it takes a village, and every family needs one. That the siblings of an Rb patient or survivor know that sometimes it just isn’t fair that your sister or brother gets so much more attention, they need you just as much as you need them even if it can be hard at times.
And to the children of adult survivors – your parents are warriors and have survived cancer, be proud of them and your support is integral to their continued growth as a survivor.
Finally, thank you to every single person who attended our Mid-Atlantic Retinoblastoma Family Weekend! It was a rousing success, and I am grateful beyond belief that WE C Hope brought so many families together.
Fundraising and Corporate Thanks
This event was supported by donations to Marissa’s 30th Cancerversary Fundraiser, and a generous donation from The Danhakl Family Foundation, with additional funds provided by World Eye Cancer Hope USA.
If you would like to ensure future regional retinoblastoma family events continue, please make a financial contribution here.
Thank you to the following groups who provided discounted or free services or tours to World Eye Cancer Hope USA:
Arlington Convention and Visitor’s Bureau
Background Solutions Entertainment
Big Red Bus Washington D.C.
Crystal City Marriott at Reagan National Airport
Emma Hester Photography
Movement Crystal City Rock Climbing Gym
Smithsonian’s National Postal Museum
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.
Read more about Marissa’s personal retinoblastoma journey, and her fundraising to support regional Rb family events.
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