Tag Archive for: cancer survivor

A faded portrait of a toddler Marissa and her grandmother, sitting together on outdoor steps.

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.

Image: A group of people gathered under a tree are smiling at the camera. On the left, Melinda wears a blue top. In the middle, Marissa wears a One Retinoblastoma World t-shirt and holds a white cane. To the right of the frame, Clayonia holds Camilla and waves at the camera. Max stands in front of them, holding his white cane. Behind them, a bright blue sky sweeps over rich foliage and red-roofed buildings.

Midwest Retinoblastoma Family Weekend: Friendships Formed in the Windy City

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.

Marissa and her mother are smiling at the camera. Marissa is wearing a black and gold number 6 USC football jersey. Her mom is wearing a cardinal USC shirt. Behind them stands the statue of Tommy Trojan on the USC campus.

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.

A young girl with a dressing over one eye sits on her mother's lap, while a medical professional crouches so his face is level with hers. He offers his open hands to her, palms up. All three people are African.

How to Advocate for Child Life Support in Your Child’s Medical Care

Parenting children through retinoblastoma is tough.  Being their chief advocate is one of your most important roles throughout their cancer experience.  Rb Survivor and WE C Hope CEO, Abby White, discusses why parents and caregivers should advocate for child life support, how to ask for child life services, and how to work effectively with child life professionals for the best outcomes.

A high doorway is framed by two Christmas trees, each standing about 10ft tall. They are exquisitely decorated with hundreds of gold lights, pink glass roses, and other ornaments that reflect and refract the light. A large banqueting table is set up in the centre, surrounded by high back red velvet chairs that contrast beautifully against the glittering gold candelabras. Gold crackers and sparkling goblets at each place setting hint at the anticipated party. Along the centre of the table, intricate models in cream, glitter and gold show scenes from the story of Cinderella. On the left of frame is the glittering expanse of a fairy-tale castle. To the right, two ladies gesture and watch the pumpkin carriage racing away over a bridge. Further right, Prince Charming stands below a clock tower as the hands point to midnight, and Cinderella races away down a flight of stairs, a single glittering slipper lost behind her. Almost off-frame, a chair is pictured, in which someone is sitting to try on a shoe. The overall setup is glittering splendour. The high doorway, significantly higher ceiling, very large, tall trees, and several statues between them, give the impression of a grand, spacious room out-of-frame.

12 Ways to Inclusive Festive Fun: How to Celebrate the Holidays with Your Child Who Is Blind or Visually Impaired – Part 2

The glorious visual spectacle of this Holiday Season can exclude and isolate a child with vision loss from retinoblastoma, but we can experience these traditions with all our senses. In part 2 of this festive blog, bilateral Rb Survivor, Abby White, shares six more ways to include blind and visually impaired children in Holiday traditions, creating delight for the whole family.

Six soft jute cloth bags in colours of earthy red, green, and gold sit in a row. They showcase two displaying kinds of tactile embellishment. On 3 bags, carved wooden tags shaped like a gingerbread man, Christmas tree and star clearly display the dates as raised tactile numbers. On the other three, foam stickers shaped like a tree, love heart and stocking, the numbers are large tactile cut-outs.

12 Ways to Inclusive Festive Fun: How to Celebrate the Holidays with Your Child Who Is Blind or Visually Impaired – Part 1

When a child has vision loss from retinoblastoma, highly visual aspects of this Holiday Season can be challenging, exclusionary and isolating. But a little thought and creative adaptation can completely change the experience. In part 1 of this 2-part blog, bilateral Rb Survivor, Abby White, shares 12 ways to include blind and visually impaired children in traditional Holiday activities.

A slide from Sarah’s presentation, titled “Thank You”, with a single photo and the One Rb World 2021 Logo below. In the photo, Sarah sits on a rock structure at the top of a mountain. Her body is facing to the left, her legs outstretched, and her feet resting on a different rock. She is leaning against the rock she is seated on, looking away from the camera at the view. Slivers of blue sky peak through the blanket of clouds, and in the distance, many trees, farms, fields and national parkland can be seen from this high vantage point.

One Rb World 2021: Planning, Creating, Sharing and Raising Hope Together

On 1-3 October, we hosted a hope-filled One Rb World 2021 meeting. Planning and hosting is always an adventure, and the 6th One Rb World was especially so! Co-Chairs, Dr. Sandra Staffieri PhD, Rb Care Co-Ordinator, Royal Children’s Hospital, Melbourne, Australia, and Marissa Gonzalez, Bilateral Rb Survivor and President, World Eye Cancer Hope USA, share behind-the-scenes insight and conference highlights.

The book When sadness is at your door by Eva Eland sits on a child’s lap as they hold it. The book is opened to a page showing an illustration of a child standing on a tree stump hugging a blue shadow that is their sadness. The text on the page reads “Maybe all it wants to know is that it is welcome”.

How to Help Your Child Work Through BIG Emotions

Young children are often overwhelmed by big emotions in the natural process of their development. When they face ongoing stressors like cancer or a pandemic, giving them support, tools and skills to learn about and work through their emotions is critical. Child life specialist Rebekah Reimer provides some practical guidance to help.

Promotional card in tropical colours. Text reads: "One Retinoblastoma World. Virtual Conference, October 1-3. A global conference for eye and cancer specialists, researchers, parents, and survivors. Register Today!” www.wechope.org/onerbworld

Register Now for One Retinoblastoma World 2021 – Sharing Ideas, Opportunities and Friendship

As the 6th One Retinoblastoma World Conference fast approaches, this year’s organizers Sandra Staffieri and Marissa Gonzalez, together with Megan Webber, are excited to share an update. They give an overview of the program, highlighting some of the sessions and goals, and the need for global discussion and collaboration involving all stakeholders.

A pink banner with the words “register now” spans the top of the image. Diamond Head in Honolulu is bathed in light, under a slightly cloudy blue sky. The One Rb World logo includes a yellow flower for Hawaii. Text reads: One Retinoblastoma World | Virtual Conference | October 1-3, 2021

Register Now for One Retinoblastoma World 2021 Virtual Conference!

Join World Eye Cancer Hope and local organizers from Australia for the sixth One Retinoblastoma World Conference, taking place virtually from October 1 – 3, 2021. Marissa Gonzalez, WE C Hope USA President, and this year’s Hosting Chair, introduces the conference and what’s in store for this unique collaborative program uniting professionals, families and survivors.