Tag Archive for: retinoblastoma survivor

A wide view of a grassy park with inflatable skee ball, obstacle course, and bounce house alongside giant versions of Connect 4 and Jenga. Next to the games are tables and chairs under white tents and a red picnic shelter. Guests of all ages are mingling throughout.

Fun in the So Cal Sun: 6th Annual Southern California Retinoblastoma Family Day

Childhood eye cancer and its lifelong impacts can be a lonely, overwhelming experience. Connecting with others who understand is a healing balm for many. On November 4th, nearly 100 young patients, survivors, family and friends gathered to celebrate and support the amazing Rb community in Southern California. Marissa D. Gonzalez, bilateral Rb survivor and WE C Hope USA President, shares highlights from another delightful Family Day.

A woman sits alone on a bench under a sprawling weeping willow tree in a park. She is facing away from the camera.

Retinoblastoma Survivors’ Perspectives on Long-Term Follow up Care

Many retinoblastoma survivors live with significant long term treatment impacts and second cancer risks. Yet most children, adult survivors and their families struggle to access appropriate ongoing care. Len Burns, a totally blind bilateral Rb survivor and licensed family therapist, highlights the most common survivor concerns, and potential ways to improve long term care and quality of life.

All the guests smile during a group photo at the Kennedy Center. They are standing beneath a giant photograph of John F. Kennedy.

Retinoblastoma in D.C. Part 2: A Capital Weekend of Memory-Making and Community Building.

The fun continued throughout the Mid-Atlantic Retinoblastoma Family Weekend in early March 2023. In the second half of our weekend recap, our families take on rock climbing, explore the Kennedy Center, and continue to form vital friendships. Bilateral Rb survivor, WE C Hope USA President and Founding Board Member, Marissa D. Gonzalez, shares more highlights from this eventful and emotional weekend.

A large, diverse group of men, women and children pose in front of the White House in Washington, D.C. under a bright but cloudy sky. They are dressed for cold weather in warm, casual clothes. Leafless trees and well-maintained lawns surround the White House.

Retinoblastoma in D.C. Partt 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. Bilateral Rb survivor and WE C Hope USA President and Founding Board Member, Marissa D. Gonzalez, recaps this eventful and emotional weekend in this two-part blog.

A male African doctor looks on as a female surgeon uses a handheld digital camera to examine a boy's eye during an exam under anaesthesia. Both doctors wear surgical scrubs, masks, gloves, and caps. A laptop computer sits open beside the female doctor, but the images projected from the camera onto its screen are not visible in the photo.

TNM Staging System for Retinoblastoma

Retinoblastoma is staged to help doctors describe the extent of cancer in a child’s body, define potential for cure, vision and eye salvage, identify the best treatments, and compare impact of different therapies. Dr. Ashwin Mallipatna explains the TNM Staging System for Retinoblastoma and why it is the best approach for patient care.

An ethnically diverse group of people sit together around a table, moving puzzle pieces. The photo is taken from above, and only the hands of the participants are visible.

Retinoblastoma Research: Types, Challenges, Opportunities

Retinoblastoma research is vital to understand how this cancer behaves; treatment benefits, side effects, and risks; and impacts throughout life.  Findings help guide medical and supportive care for the child patient, survivor, and family.  Rb Survivor, Abby White explores different types of medical research; their goals, benefits, and limitations; and opportunities to overcome the current challenges.

Two men and a woman sit at a table with computers, smartphones and papers. One man is talking into a handheld mic while the others listen.

You Can Help Change Retinoblastoma Care: Volunteer with WE C Hope

Events that unite our retinoblastoma community are vital for mutual support and collaboration to advance care for children, adult survivors, and families.  They all happen thanks to dedicated volunteers.  In the second of this 2-part post, we explore the many ways volunteers support our work, benefits to both the individual volunteer and community, and how you can help.

Lisa, Marissa, and Kristen smile at the camera. They all wear matching One Retinoblastoma World T-shirts.

Volunteers Change Retinoblastoma Care: Family Days and One Rb World

Retinoblastoma is a rare childhood cancer with unique family and lifelong impacts. Events that bring our community together are vital for mutual support and collaboration to advance care. They happen thanks to dedicated volunteers. In part 1 of this 2-part post, we focus on Family Days and the One Rb World conference, planned and hosted entirely by volunteers.

Two young girls stand together on a large tree stump in a wooded park.

Laughter, Life Lessons and Love Take Root at the Texas Rb Family Weekend

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.

Close up image of a single red bauble hanging from the branch of fir tree. The bauble captures various light and shadows, including one point of bright white. The overall impression is similar to the white reflex captured within a red eye reflex in the early stages of retinoblastoma.

10 Ways to Celebrate the Holidays in Hospital

Being in hospital during the Holidays means children and parents cannot join the usual festivities. But you can bring festive spirit and familiar traditions into your hospital space to delight and sustain you all. While cancer has no regard for Christmas, Rb Survivor, Abby White shares 10 ways to support your emotional wellbeing, and your child’s, and welcome festive cheer during a yuletide inpatient admission.