Beyond Retinoblastoma: Celebrating Cancer Survivorship; Advocating Lifelong Care.

Thursday March 28, 2024

At seventeen months old, Marissa Gonzalez was diagnosed with bilateral retinoblastoma – the first turning point in her lifelong journey with this cancer syndrome.  Today, as President of WE C Hope USA, she celebrates 32 years free from eye cancer, and shares the latest chapter of her cancer survivorship story, with two appeals to all in our community.

Marissa wears a pistachio green sundress and smiles broadly. The background is a beach scene with blue ocean under a clear sky and people sitting in chairs under deep blue parasols.NYT Pic

Another Milestone of Cancer Survivorship

Yesterday, I celebrated my 32nd Cancerversary from bilateral retinoblastoma!

One year ago I was diagnosed with a second primary cancer that was caught early and successfully treated. The melanoma was found on my nose and I had about one third of my nose removed and reconstructed last June.

This was a very difficult surgery because when you grow up with a significant facial and eye deformity, so many people point at you and comment that you look different. After a dozen facial reconstructions, the mere thought of having a large piece of my nose removed dissolved me into pure devastation.

I am now nine months post-op with my new nose looking great, thanks to a skin graft from behind my left ear.

My second primary cancer was only diagnosed because I vigilantly meet with my cancer survivorship team, including dermatology. My survivorship team also includes my genetics team, my ocular oncology team, my retinoblastoma team, my neuro-ophthalmology team, my ocularist, my general practitioner, and last but certainly not least, my therapist.

If you think that is a long list of medical professionals, you have no idea what it takes to care for a pediatric cancer survivor.

To read more of my experience with retinoblastoma, loss of my remaining sight decades later, and survivorship care insight, check out my three blogs:

Advocating for Cancer Survivorship Care

For survivors, knowing our genetic status and individual second cancer risks is critical to advocate for lifelong care. To learn more about the second cancer risks associated with retinoblastoma, please check out the Second Primary Cancers page and Retinoblastoma Genetics section on our website, or the blog: Living with the Retinoblastoma Cancer Syndrome.

As the leader of the USA chapter of World Eye Cancer Hope, it is both a privilege and an honor to work alongside the global leaders in retinoblastoma care, survivorship, and genetics. As well as advocating in the vast arena of mental health issues that accompany a pediatric cancer diagnosis.

In August last year, I travelled to Kenya to speak about WE C Hope and One Retinoblastoma World at the first ISOO Africa congress.  The International Society of Ocular Oncology is the global professional body for all who treat and research eye cancer, and I was honoured to spend time with retinoblastoma specialists from across Africa and around the world.

While in Kenya, I was interviewed on several prime-time TV programs about my Rb experience and advocacy, alongside Dr. Kahaki Kimani, retinoblastomas specialist at Kenyatta National Hospital, Nairobi.  Here is our interview from Citizen TV.

Building Hope for Families and Survivors

I began a fundraiser for WE C Hope two years ago on my 30th cancerversary, to finance regional family and survivor events.  Since my fundraiser began, we have hosted events in Los Alamitos (California), Chicago, Washington D.C., Austin, and most recently Denver (report coming April 15).  These events have brought vital support to more than 250 young patients, family members and survivors across the country.

We are also working with several retinoblastoma centers to develop information support packs for newly diagnosed families.  Support packs will include information about treatments, genetics, family support, child life, and mental health resources.

Our supporters are vital, helping us provide information at critical times in care, and events in different locations across the country where all families and survivors can meet, find hope, and navigate Rb together.  Your support helps our community heal and thrive.

I wish to complete my fundraising goal by the end of World Retinoblastoma Week (May 18). If you would like to contribute and help us build support and advocacy for our Rb family and survivor community, please follow the link below. Your donation will directly impact young patients, survivors, and their families, along with children who have yet to be diagnosed with retinoblastoma.

I also encourage you to read an important article the New York Times published last October, highlighting the need for greater investment in pediatric cancer survivorship care, support, and research. This eloquent Opinion section cover story shines a light on retinoblastoma and its lifelong effects in particular.

New York Times Opinion | It Takes a Lifetime to Survive Childhood Cancer

Marissa wears a red and white baseball shirt, bearing the World Eye Cancer Hope logo. Smiling broadly, she holds up a copy of the New York Times Opinion section, dated Sunday, October 6, 2023. The cover features a large, shadowy photograph of Marissa in profile, a single beam of light illuminating her eyes and nose. The slightly obscured headline reads: The Price of a Cure.

Marissa holds up a copy of the NY Times Opinion Section from October 6, 2023, featuring her photograph on the cover.

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.

Marissa, smiling and wearing a fascinator

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A Milestone Anniversary: Celebrating 30 Years Being Cancer Free

For many children and their families, eye cancer diagnosis begins a lifetime journey, with many twists and turns through treatment and long after being declared cancer free. World Eye Cancer Hope USA President Marissa D. Gonzalez reflects on three decades being cancer free from retinoblastoma, the journey of a cancer survivor, and the future with her cancerversary fundraiser.

Living With Vision Loss: Challenges and Changing Perspectives

For many survivors of bilateral retinoblastoma, vision changes throughout life. This may be due to treatment late effects, eye health, or other medical events. World Eye Cancer Hope USA President and founding board member, Marissa D. Gonzalez, recounts her journey with vision loss during two different seasons of life, and her difficult course with acquired blindness as an adult after decades of good sight.

7 Survivorship Tips and Tricks: navigating the adult post-retinoblastoma world

Diagnosis and treatment of eye cancer in early childhood is only the start of a lifelong story for many individuals affected by retinoblastoma. Marissa Gonzalez, Rb survivor and President of World Eye Cancer Hope USA, shares seven tips for being an active participant in your retinoblastoma survivorship journey.

Living with the Retinoblastoma Cancer Syndrome

For individuals living with the retinoblastoma cancer syndrome, childhood eye cancer is only the start of the story. Sharing personal experience and insight from fellow Rb survivors, WE C Hope CEO Abby White explores (part 1) the risk and who it affects, the challenge of establishing personal risk, provision of lifelong follow up care, and early detection of second cancers; (part 2) key challenges encountered along the way, from working with doctors who do not understand the risk, to psychological impacts, and the need for more effective care.

Part 1: Understanding the Risks and Lifelong Care

Part 2: Risks, Impacts, Challenges and Opportunities

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