Mile High Moments at the Denver Retinoblastoma Family Weekend
Thursday April 15, 2024
Fifty retinoblastoma patients, survivors, and their family members joined World Eye Cancer Hope USA in February for three days of connection and fun in Colorado’s capital. Marissa D. Gonzalez, President and Founding Board Member or WE C Hope USA, shares highlights from the weekend, and why these gatherings are so important to our community.
WE C Hope USA was excited to continue our regional family events in February, this time amidst snow flurries and sunshine in Denver, Colorado. Our previous weekends, including Chicago, Austin, Washington D.C. and the Southern California area, have proven that in-person connection in the retinoblastoma community is both vital and greatly appreciated.
Over the past 18 months, these events have drawn in over 300 patients, survivors, families and their close supporters from 25 states and D.C. – a statistic that drives home the need to continue traversing the USA to bring our retinoblastoma families together.
Getting to Know You
Friday, February 16, 2024 kicked off our Denver weekend at the Hilton Garden Inn. We dined on sliders, grilled cheese and a nacho bar while the children played and made new friends. Glowing flower crowns, glow wands and light up necklaces adorned the little ones – as well as some adults!
Our welcome dinner allowed each family and survivor the opportunity to introduce themselves and share about their personal retinoblastoma journey. We shared tears as well as laughs, especially as John Ngyuen told the group he has two “party eyes” made by his ocularist, but his wife will not let him wear them in public. John’s humor and relatability was comforting, and his three children were wonderful.
Rb survivor John Nguyen and his 5-year-old daughter Cherubim share a hug at our Friday evening mixer.
Alexander Hopper celebrated his 13th birthday at our Friday evening event where we sang Happy Birthday and handed out fruit snacks to the kids – his favorite treat! His mom, Andrea Reitzel, enjoyed watching her son experience joy with his new friends.
She said, “We’re at the retinoblastoma family weekend and Alexander is loving it. He is 11 years clear of cancer and we’re celebrating his 13th birthday with all our friends and some new ones.”
On hearing this, Alexander jubilantly exclaimed “Cancer Free!”, and the crowd went wild, sparking an immediate round of applause and cheers for the birthday boy.
Families mingle and enjoy a delicious dinner on Friday evening.
Guests spanned all ages and stages in their retinoblastoma journey, from toddlers in active treatment to adults in their 20’s, 30’s, 40’s and beyond. One survivor who flew in from Tulsa, Oklahoma to join the weekend, was Zaakirah Muhammad, a bilateral survivor and active advocate.
She shared, “This is my first Rb weekend, and I love it. Being able to connect with the faces that I met on Facebook and hug it out in person feels amazing, and I also get to travel. I love the fact that you go to different cities, and we can get immersed into the city we are in. I’m super excited to continue to partner with World Eye Cancer Hope, especially as we get to One Rb World Hawaii in October, so I’m excited to be here.”
A group of (mostly) survivors gather in front of the WE C Hope banner, including (left to right) Clayonia, Gable, Zaakirah, Aziza, her fiancé, Bruce, and Marissa.
Gable Meade, along with his wife, Lilly, reconnected in person with his teacher for the visually impaired, Lori Banos. Lori, who is an Rb mom and WE C Hope USA founding board member, was thrilled to introduce Gable to a new group of friends who understand his journey. She said, “When Gable told me he and Lilly would be attending our Denver event, I was so happy. Nothing brings me greater joy than witnessing my students grow and flourish, and now to watch Gable at his first Rb event is great.”
Gable echoed Lori’s enthusiasm, noting that, “Having recently moved to Denver, it’s very exciting to find fellow visually impaired adults I can go to with questions about local resources, blindness problems, and just to chat as friends. My guide dog even has a crush on another survivor’s service animal.”
Rb mom and WE C Hope Vice President, Lori Banos, reconnects with her former student, Gable Meade, his wife, Lilly, and service dog, Bowman.
The Collins family – parents Kelly and Leo, Rb survivor Eliza, and super-sibling Leo – pose for a WE C Hope photo at the beginning of our Friday evening event.
During the evening, fellow board members Lori, Clay, and I updated our guests on the exciting events WE C Hope USA has had in recent months. These include sponsoring and attending the International Society of Ocular Oncology’s first-ever retinoblastoma conference in Africa, our continued successful regional events across America, and our new Tee Public online store. And of course we encouraged everyone to attend the 7th One Retinoblastoma World conference in Hawaii this October.
Rb mom Dayna Schaef introduces her family, including 12-year-old survivor Jack and his 10-year-old sister Katherine.
Wings Over the Rockies: An Aerial Adventure
Saturday morning found our group at the Wings Over the Rockies Air and Space Museum in the Lowry area of Denver. Phil Steffes and his team of volunteers led us on a fabulous tour where we learned about historic aircrafts, artifacts and memorabilia, and explored the future of aviation. Our guides explained the exhibits on display, and encouraged everyone to touch, feel and even sit inside some of them.
Rb survivor Alexander Hopper holds up a piece of equipment to show his mom, Andrea.
Our group touches and explores real plane parts as the museum volunteers explain their uses.
One of our young survivors, Jack Schaef, is an aspiring pilot, who was able to fly with the US Air Force on his Make-a-Wish trip. We made sure Jack was front and center to soak in the knowledge.
Families, survivors, and WE C Hope USA hosts gather in front of a NASA Apollo Command Module Boilerplate and other airplane parts at Denver’s Wings Over the Rockies Air and Space Museum!
Rockin’ the Rockies
Swallow Hill Music (SHM) was our Saturday evening adventure, and a raucous one at that! Swallow Hill’s CEO, Jessy Clark, and her team at SHM put together two music classes that had the kids and adults playing instruments, dancing, singing and using their breath and bodies to control their voices.
Our Rb kiddos and their super-siblings drum together at Swallow Hill Music, as music teacher Kristen leads the beat.
Music teachers Rachel and Kristen were fantastic coaches, and led both our young and not-so-young guests in a “Shake it Off” sing-a-long. Rachel’s blue lipstick was a hit, and her beautiful voice captivated the group as she performed during the concert portion of the evening.
She even taught us about the ukulele, and performed “How Far I’ll Go” from Moana – truly revving us up for our One Rb World conference in Hawaii later this year!
Our young guests have a dance party as Rachel serenades them with a ukulele cover of “How Fall I’ll Go” from Disney’s Moana.
During our evening at SHM, bilateral survivor Aziza Rodriguez, along with her gorgeous guide dog Stella, spoke to us about her experience at her first family weekend.
“I was treated in California at Children’s Hospital Los Angeles by Dr. Linn Murphree, and I am 32 now, I’ve been cancer-free for about 30 years. It is so empowering to be here this weekend and meet people; especially to see all the babies and their families because I didn’t have that connection growing up. So, seeing them meet littles their own age, and seeing all the networking between parents is something that my mom never got to have. This is so special.”
Aziza brought her fiancé, Bruce, and his 10-year-old daughter, Rita, to the event, along with fellow Rb survivor, Adam Campfield, and his wife, Kayla.
Running Wild at the Denver Zoo
One of our favorite activities on these family weekends is bringing our group to a zoo or aquarium. Denver was no exception! The amazing staff at Denver Zoo organized two fabulous behind-the-scenes adventures for us. In our first wild encounter, the zookeepers brought in a laughing kookaburra named Adelaide – this bird sure loved to talk!
Our group met a laughing kookaburra named Adelaide in our behind-the-scenes tours of Denver Zoo!
Few people shied away from Flavio, an Argentinian boa constrictor, who felt surprisingly soft and not at all slimy or scary.
3-year-old Rb patient Klark from Utah meets Flavio, an Argentinian boa constrictor, alongside his dad Kevin.
The docile tortoise was a firm favorite. Kids and adults alike loved learning about his life at the zoo, and gently petting his shell.
Rb sibling Jack and dad Casey meet and pet a tortoise while Rb patient Klark and his dad Kevin eagerly await their turn.
Lunch at the zoo offered one final group activity, and the hugs and tears continued to flow as people exchanged contact info and made plans to see each other soon.
Our group thanks World Eye Cancer Hope for a lovely weekend while at the Denver Zoo!
Giving Back to Colorado
Guests generously brought toys and gift cards that our team gathered during the weekend and donated to the Children’s Hospital Colorado – Aurora campus, after our event concluded. We valued so much our collective giving back to the community of Colorado after this fabulous weekend of meeting friends and making memories in the Mile High City.
Board members Marissa Gonzalez, Lori Banos, and Clayonia Colbert-Dorsey outside Children’s Hospital Colorado with some of the toys and books donated by our lovely Rb families and survivors!
Denver Was Dynamite
“Each time WE C Hope visits a new area, I am blown away by the magnitude of positive impact these events have on our Rb families,” says Rb survivor and board member Clayonia Colbert-Dorsey. “I share with people that when I walked into the 2017 One Retinoblastoma World conference in Washington D.C. I ‘found my tribe’ and my life was forever changed.”
Katie Korejwo, mom to three sons, including Rb survivor Connor, marveled that she met three Rb families who live within a ten-minute drive of her in the Denver area – all previously unknown to her. This instant formation of a support group, and many future playdates, is exactly the purpose of these weekends.
The Collins are one neighboring family, whose energetic six-year-old, Leo, announced to the group that he played with his sister Eliza, now 3, during her Rb treatments. His kind spirit and generous heart were on display all weekend as he watched over sweet Eliza and had a blast at all our activities.
Cuc Tran, mom of Rb warrior Hudson, age 4, became emotional as she expressed the importance of connecting with other parents in person. She and her husband Jeffrey and children, Aria and Hudson, drove up from Austin, Texas, and we are incredibly happy they did.
Rb mom Cuc Tran recounts her 4-year-old son, Hudson’s Rb journey, and how important these family weekends are to her and her husband.
Reflecting on our sixth regional event, along with six annual Southern California days brings me the utmost pride. Adult survivors who were treated before the internet, social media and child-life programming in hospitals had little to no support system. Their parents and caregivers had no one to turn to who could share in their challenging path.
Since becoming involved with WE C Hope USA, one of my goals has been to bring together our community, both here in the USA and globally.
In March of 2022, celebrating my 30th Cancerversary, I launched a fundraiser with a goal of raising $15,000 to bring regional events and support to our families and survivors. At the time of writing, I am just shy of needing $2,000 to complete this goal. If you would like to contribute, please visit my cancerversary fundraiser today.
Special Thanks
Many people made our weekend in Denver extra-special. We have particular gratitude for:
- Patti Sloan Photography.
Jedd Snyder at the Hilton Garden Inn Cherry Creek. - Phil Steffes and the volunteers at Wings Over the Rockies Air and Space Museum.
- Swallow Hill Music: CEO Jessy Clark, Michael John McKee and music teachers. Kristin McSorley and Rachel Taulbee.
- Kelly Bockert and the wonderful zookeepers at the Denver Zoo.
Read About Our Other Recent Regional Events
Fun in the So Cal Sun: 6th Annual Southern California Retinoblastoma Family Day
On November 4th, 2023, nearly 100 young patients, survivors, family and friends gathered to celebrate and support the amazing Rb community in Southern California…
Retinoblastoma in D.C.
Part 1: A Capital Weekend of Friendship, Community and Fun
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…
Part 2: A Capital Weekend of Memory-Making and Community Building.
The fun continued throughout the Mid-Atlantic Rb Family Weekend. In the second half of our weekend recap, our families take on rock climbing, explore the Kennedy Center, and continue to form vital friendships.
Laughter, Life Lessons and Love Take Root at the Texas Rb Family Weekend
On December 2-4, 2022, the Lone Star State shone bright as World Eye Cancer Hope USA welcomed survivors, patients and families from across the state for a festive weekend of fun and friendship.
Midwest Retinoblastoma Family Weekend: Friendships Formed in the Windy City
On the weekend of July 8-10, 2022, patients, survivors and families gathered for the first-ever Midwest Retinoblastoma Family Weekend, just outside Chicago. A celebration of friendship, support, hope, and fun shared together.
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. She was Event Chair for the One Retinoblastoma World Conference in 2017 and 2021, and also for this year’s conference in Hawaii. In her downtime, Marissa enjoys travelling and going to Disneyland. Read Marissa’s story:
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