World Eye Cancer Hope for One Rb World!

One Retinoblastoma (Rb) World is a biennial in person gathering that unites clinicians, researchers, parents and cancer survivors to share support, knowledge and experiences, discuss priority concerns, and develop goals for the future together. Children also have access to a child life program, filled with fun activities tailored to support healthy coping and development.

The format has led to important collaborations supporting early diagnosis, partnerships building clinical care in low income countries, psychosocial care initiatives, child life support resources, and research studies addressing parent and survivor concerns.

When my second child was born I thought I was ready for it. I was excited to have a little girl and was used to diapers and sleepless nights. I loved holding my son in my arms and was anxious for her arrival. My daughter was born one week before her due date and was a healthy 9 lbs. However, she would cry whenever we had the lights on or the sun was shining in through the windows. I developed a spinal headache following my C-section so I initially didn’t mind the darkened room. But, this behavior continued for months. She cried when we went for a walk outdoors, went to the pool, drove in the car, opened the windows, etc. I wondered why I had a baby who wanted to live in perpetual darkness and I repeatedly called her pediatrician and others for advice. I got the same answer from everyone: “she has been living in a dark womb for 9 months and just hasn’t adjusted yet - give her more time.” I waited four months until I asked her pediatrician to take a closer look at her eyes at her well baby check up. Her pediatrician referred us to an ophthalmologist because she noticed a white reflex instead of red while performing the eye exam. She was diagnosed with bilateral retinoblastoma at four-months-old by the ophthalmologist and we were rushed to the hospital to meet with the oncologist that same day. She began chemotherapy four days after diagnosis, on her brother’s second birthday. Every three weeks, we took her to the hospital at 5:45 a.m. and she would be put under general anesthesia. She would receive laser treatments to her eyes and then after she awoke she would stay over night and receive intravenous chemotherapy. Additionally, she had many hospital stays due to fevers, illness, etc. in between each treatment. She also had two blood transfusions due to low hemoglobin. Chemotherapy took a toll on her immune system and after four treatments she had to take a six week break because her white blood cell counts were just too low. Her counts came up slightly and chemotherapy was started again but this time it had no effect on the tumors in her right eye and her ophthalmologist recommended enucleation (removal of the eye). The tumor was also covering the optic nerve which meant it could easily find its way to the brain, assuring a short life expectancy. Her right eye was removed March 4, 2002 and she completed chemotherapy one week later. We celebrated that she was a cancer survivor and made vacation plans to celebrate on her first birthday. But, at a routine eye exam two and a half months later, 18 new tumors were found in the left eye. They were in the vitreous (fluid of the eye) and could not be treated with chemotherapy and laser. Radiation was her only option. She began radiation on May 31, 2002, just a few weeks before her first birthday. Every morning, Monday – Friday, we arrived at the hospital at 8:00 a.m. for general anesthesia and radiation. She completed radiation on July 5, 2002.  She wears glasses with bifocal lenses and correction and continues to have yearly eye exams. My daughter was the only child treated for Rb at our local hospital in 2001.  She attended school as the only childhood cancer survivor and the only child with a vision impairment. 

Post enucleation

Retinoblastoma is a rare, aggressive, yet highly curable cancer.  It impacts the entire family.  Additionally, long term follow up care is necessary due to the genetic nature of this cancer. Children continue to die due to lack of awareness and lack of appropriate medical or follow up care. Your generous donation allows us to continue to spread awareness and to combat the isolating nature of Rb.  Events such as One Rb World and our weekend family events help us to join our community so no one has to experience this alone. 

One Rb World 2024 is entirely funded by WE C Hope USA and our generous donors like you. Thank you for helping us continue to build a One Rb World community!