Monday December 19, 2022
In-person contact with other families and survivors affected by childhood eye cancer is life-changing. On 2-4 December, the Lone Star State shone bright as World Eye Cancer Hope USA welcomed survivors, patients and families from across the state. Marissa D. Gonzalez, bilateral Rb survivor, and President and founding board member of WE C Hope USA, shares highlights from the festive weekend.
Young Rb survivors Violet and Theo, with violet’s super-sibling, Ophelia.
The Texas Hill Country was a gorgeous backdrop to WE C Hope’s first-ever trip to the region. Families drove and flew to Austin where they were treated to a full three day weekend of outings, bonding, and of course some Texas BBQ.
The fun began at the welcome reception on Friday, December 2 in the Domain area of Austin, and included yummy food from Austin’s Pizza. 7-year old unilateral survivor Theo was especially excited to attend the event. His mother Lauren said, “Theo has never met another retinoblastoma survivor, and has only met one adult with a prosthetic eye.”
Theo, Macy, Ophelia, and Violet explore their goodie bags.
Theo melted my heart when he was sorting through his goody bag that we provided and noticed a toy truck only had three of its four wheels. Theo looked at me and said, “My truck is missing a wheel, but it’s OK because I am missing an eye.” I knew immediately that he and I would be buddies for a very long time!
Most of our group, including five Rb survivors, at the Austin Aquarium. It’s always better to be with others in the jaws of a shark!
Saturday brought an early morning outing to the Austin Aquarium where our group had a private behind-the-scenes tour prior to the aquarium opening to the public.
4-year old Violet, an aspiring veterinarian, and her almost 3-year old sister Ophelia loved feeding the animals, petting a red tail boa constrictor and exploring with their parents and baby sister Willow. Violet, a unilateral Rb survivor, got up close and personal with sting rays as they splashed people and ate krill out of the kids’ hands.
Our aquarium tour guide Meg encouraged kids and adults alike to learn about aquatic birds, even telling us phrases the birds would repeat to us. She provided a very descriptive and tactile experience for the group, which concluded with a group photo in the jaws of a shark!
Rb Family Days are important opportunities for dads to meet one another, gain and share support, and relax.
Rb survivors Violet and Theo had fun with this light-up shapes game, learning about the underwater world of bioluminescence.
Some of our younger attendees had a blast playing with these light up seats at the aquarium. Each time they touched the seat, it lit up, creating luminescent fun.
Saturday evening found our group at the Westgate Lanes for bowling, along with the highly anticipated meal from Slab BBQ. The younger ones used bowling lane bumpers for assistance, and the adults became competitive. During our game, I was able to connect with Theo’s wonderful grandmother Carolyn, who for the record, whipped all of us at bowling!
The multi-generational support system for any cancer patient is so important, and it was wonderful to witness Theo, his mother, Lauren, and grandmother, Carolyn participating in the weekend’s activities.
After some strikes as well as gutter balls, we dined on chicken, brisket, pulled pork, macaroni and cheese, potato salad and green bean casserole. I think I gained an entire bowling ball in weight just from that wonderful meal!
Our younger survivors, Theo, Violet and Macy, along with Violet’s sister Ophelia, were able to enjoy the games while spending time with Rb survivors around their ages.
Everyone had fun at the bowling lanes. Parents and survivors bonded over fun and friendly competition.
Rb grandmother, Carolyn, and Rb mom, Lauren, enjoyed the welcome reception, where their survivor, Theo, played with other kids.
Once the younger children went to bed, Rb moms Courtney, Jenifer, Lori, and adult survivors Clayonia and myself gathered in the hotel lobby for wine and candid conversation. Jennifer expressed her concerns about daughter Macy carrying the RB1 mutation, and what challenges lay ahead of them due to this. Macy will begin seeing a survivorship specialist in 2023, and I was happy to hear that her family would have professional guidance in this area.
Courtney and Jennifer explained to the group that their families initially met at a Houston area event hosted by the organization Sunshine Kids that brings pediatric cancer families together. Their daughters just so happened to be the same age and both with retinoblastoma. Now their new friend Theo will be able to join in the friendships with both girls, and their families have each other to lean on, compare notes or simply socialize.
Rb survivors, WE C Hope Directors, and event hosts, Marissa D. Gonzalez and Clayonia Colbert-Dorsey, at the festive State Capitol.
Unilateral survivor and WE C Hope board member Clayonia Colbert-Dorsey, said of these connections:
“After our Midwest Rb Family Weekend in July, we witnessed first-hand the need for events like these weekends to bring together Rb patients, survivors and families of all ages to increase our support network.
“Being in Austin and watching this magic happen again reaffirms how vital it is to continue to connect our Rb community. I am personally excited to bring World Eye Cancer Hope USA back to the Washington D.C. area so that families along the East Coast are offered the same opportunity to connect.”
Sunday took us to the Texas State Capitol with a private tour of the visitor’s center and the Capitol, which boasts a statue of the Goddess of Liberty atop the dome. She holds a single gilded star high to represent the Lone Star on the state flag. Holiday decorations brightened the lobbies of the Texas Senate and House of Representatives, and offered a festive backdrop to our final activity of the weekend.
Rb survivor Macy and her parents at the welcome reception. Rb Family Days are vital support for both parents and children.
Following successful Midwest and Texas Rb Family Weekends, and a record crowd of 80 at our fifth annual Southern California Rb Family Day, we are excited to return to the Washington D.C. area for the weekend of March 10 – 12, 2023. WE C Hope welcomed the international retinoblastoma community to the same location in 2017 for the One Retinoblastoma World conference.
We welcome patients, survivors, families and medical professionals from the Mid-Atlantic, East Coast and other areas to join us for a fun-filled weekend of camaraderie, friendship and life-long bonds.
My aunt, Jeanne Luethke, shared with the Texas families, “The One Retinoblastoma World conference is the best place to meet the top retinoblastoma medical professionals across the globe. It brings parents, survivors and medical professionals together on a level playing field to openly discuss treatments, advancements in care and survivorship care. As a member of my niece’s support system, The One Rb World conference in D.C. was an influential experience.”
World Eye Cancer Hope USA relies on donations from our supporters to make these events possible. If you would like to provide financial assistance to support our family events, please visit Give Hope hub to donate or find out about fundraising.
On behalf of Lori, Clayonia, and the entire WE C Hope USA board, I extend my appreciation and gratitude to our support community here in the United States, and to our WE C Hope team in Canada, Kenya and the United Kingdom.
It takes a village to support families and survivors living with retinoblastoma, and professionals advancing care. Through all our efforts, along with other brilliant partner organizations, we are doing vital education, and supporting the needs of our wonderful national and international retinoblastoma family.
Happy Holidays to all!
Rb survivors Violet and Macy.
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.
This year’s events were funded by generous donations from the retinoblastoma community and our friends, in conjunction with Marissa Gonzalez’s 30th Cancerversary Fundraiser. Please consider a financial gift 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.
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.