Monday September 12, 2022
This summer, patients, survivors and families gathered for the first-ever Midwest Retinoblastoma Family Weekend, just outside Chicago. WE C Hope USA President and Rb survivor, Marissa Gonzalez, reflects on the friendship, support, hope, and fun shared, and the importance of coming together in person as a community. She also gives an update on more events coming soon to other regions across the USA.
Adult survivors Melinda, Marissa and Clayonia pause for a photo at the Brookfield zoo with current patient Camila, and 8 year old survivor Max.
Over a sunny weekend this past July, World Eye Cancer Hope USA hosted a Midwest Rb Family Weekend, bringing together 24 guests outside of Chicago. Families drove and flew from Ohio, Iowa, Minnesota, Illinois, Maryland and California for this inaugural regional weekend. Attendees included four adult survivors, three children in active treatment and close follow up care, and two school-age survivors.
The festivities kicked off Friday evening with dinner from famed pizzeria Giordano’s. We all mixed and mingled in a relaxed environment, and got to know each other while enjoying delicious Chicago-style deep dish pies. We were so busy enjoying the moment, we forgot to take photos!
Five year old Lyra and her parents, who drove in from Minnesota, were thankful for the timing of the weekend, as Lyra had only had her eye enucleated two weeks prior.
This adorable little girl quickly befriended me, and we bonded over light up glow sticks and princesses. Lyra’s parents were able to ask questions of the adult survivors and other parents about prosthetic eyes, the process of being fitted for an eye, and what to expect for her first year in school.
Twenty-one year old survivor Sena Graham from Iowa offered helpful advice to Lyra’s parents, and to the family of six month old Freya. They talked at length about adjusting to prosthetic eyes, involving teachers in their classroom journeys, and navigating the school years as a visually impaired cancer survivor.
Sena’s mom, WE C Hope USA founding board member, Lori Banos, walked us through the importance of advocating for your child with IEP’s, and working with the teachers as partners in your child’s schooling. As a teacher for Visually Impaired and blind students, Lori is perfectly placed to give valuable insight and advice about forming a team around your child’s education, and making sure the child has a voice in the process.
WE C Hope USA board member, Clayonia Colbert-Dorsey, shared that her first interaction with another retinoblastoma patient or survivor was at the One Retinoblastoma World conference in Washington D.C. in 2017. She told us all about the profound impact that event has had on her life.
“Before One Rb World I had never known anyone with retinoblastoma. During the conference, I met medical professionals from around the world whose cutting-edge treatments were saving eyes and lives of this generation of Rb patients. Spending time with fellow adult survivors helped me know that I was not alone as an Rb survivor. Over the past five years, I have maintained many of the relationships formed at the conference, and now I am thrilled to give back to the Rb community as a board member, and help plan these family weekends.”
Lori and her daughter, Sena, an Rb survivor, enjoy Medieval Times.
On Saturday, each family shared their retinoblastoma story over breakfast, and we met members of patients’ extended support teams. Six month old Freya was accompanied by her parents and grandmother, and two uncles also joined them throughout the weekend. Looking back on the weekend’s events, Freya’s mom, Emily, says:
“It was so nice being able to talk to other families, and just the overall understanding of each other’s situations. I really hope Freya can have more experiences like this.”
During breakfast, I explained that some of the monetary costs of the week end were supported by my personal fundraiser for World Eye Cancer Hope USA. I told the group that as a child undergoing treatment in the 1980’s, there were no child-life specialists, internet support groups, or in-person opportunities to meet other Rb families outside the hospital. My single mother had no place to turn to for mental health supports, for either parents or for the children in active treatment.
As a teenager and young adult, I knew zero other cancer survivors. Once I began to feel confident in my survivor status, I found these groups exist now, and they are vital. This is why I began my advocacy work. I personally fundraised $7,500 for WE C Hope to host a Family and Survivor Day at the 2017 One Rb World conference.
In honor of celebrating 30 years being cancer-free in March 2022, I embarked on a $15,000 fundraiser with the goal of hosting regional family meet-ups to introduce patients, survivors and their families to each other, and foster our retinoblastoma community. We can all learn from each other’s experiences, and having friends, survivors and parents we can turn to is vital.
A group photo at Medieval Times
A long and fun-filled day of adventure followed for our group. After breakfast, our group headed to the Brookfield Zoo, which proved to be a gleeful outing. Eight year old bilateral survivor Max was over the moon excited when a private tour of the education center brought him up close and personal with a corn snake named Omaha. He was fearless in petting Omaha, and both he and Lyra were able to hold and touch pelts, skeletons, and antlers; and learn about different animals from the zoo’s wonderful docents and staff.
Adult survivors also took the opportunity to bond while exploring the zoo, including Melinda Mahoney and her daughter Nicole. Melinda had never met another retinoblastoma survivor or patient, and she and Nicole were a joy to get to know.
One year old bilateral patient Camila and her three year old twin brothers, Manny and Tony, had a blast running around the zoo with their mom, Janet, and teenage cousins. Janet expressed her gratitude for being able to meet other parents of children in active treatment in the Midwest area.
Rb Survivor Max, who had both eyes removed to save his life, was delighted to meet Omaha.
Lyra cautiously said hello to corn snake Omaha, and learned there was nothing to fear.
Young Rb survivors Lyra and Max pose with a Brookfield Zoo docent after having a tactile experience touching pelts, antlers, skeletons and even a live snake.
Adult survivors Melinda, Marissa and Clayonia pose with a Brookfield Zookeeper and corn snake, Omaha. The adults were not nearly so brave with Omaha as the kids!
A rousing spell of knights, princesses and jousting was in store for Saturday evening as we all attended dinner and theatre at Medieval Times. Costumes, crowns and glow sticks adorned both children and adults as the knights fought for their teams, and World Eye Cancer Hope was announced over the loudspeaker as a group of special guests.
Rb survivor, Freya and her parents enjoy Medieval Times.
Sunday morning brought more sunshine and networking before our guests caught flights and drove home.
It was such an honor to be able to fundraise to cover the cost of the activities and some meals for this family weekend. I was thrilled at its success, and together with Lori and Clayonia, I cannot wait to bring our community together in California, Texas, and the mid-Atlantic area.
World Eye Cancer Hope USA as will host the following three regional events in 2022. Click on the links to find out more and register to join us.
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.
The events detailed above are funded by generous donations from the retinoblastoma community and our friends, in conjunction with Marissa Gonzalez’s 30th Cancerversary Fundraiser. Please consider a financial contribution to ensure the longevity of these events, and so we can reach 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.
Rb survivor, Princess Lyra, following dinner at Medieval Times.
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.