"Our lives begin to end the day we become silent about things that matter" - MLK Jr.

Top 10 Rarely Discussed Subjects in Retinoblastoma

Retinoblastoma is a complex childhood cancer with significant impacts during treatmet and beyond, often continuing throughout life. What are the least discussed subjects in Rb research and care? Why do they matter, and how can research in these areas improve care and quality of life? Rb Survivor, Abby White explores 10 varied topics affecting patients, survivors, and family members at different stages of life.

Fire Lilies - deep orange lilies set against a green grass background.

Fire Lilies: living with a Rare Cancer Syndrome

“I have retinoblastoma”. Medical professionals would correct me – “you had retinoblastoma – now you are cancer-free”. But am I really free from cancer?

Quote: "Two roads diverged in a wood and I took the one less traveled by, and that has made all the difference." Robert Frost

A Rough Road Through The Valley

So many days I feel I am banging my head against a wall, watching children die who could have been saved with clear information, simple surgery and emotional support. But the knowledge of how life could be made better for each child, family and survivor is a strong motivational pull. The suffering that can be mitigated with relatively small resources. Somehow when I think I have no more energy, I mine a new seam from within, and from the encouragement and kindness of others, and I move forward, one step at a time.

A family is pictured with their medical team, including ophthalmologist, oncologist, nurse specialists and social worker.

Forming A Therapeutic Alliance: prescription for success

A positive, open relationship between parents and the child’s medical team is vital throughout treatment and beyond. A therapeutic alliance requires good communication, mutual trust, respect and care, as well as knowledge and skills to provide high quality medical care.

This image diagram describes each group of the International Intraocular Retinoblastoma Classification

Staging and Classification for Intraocular Retinoblastoma

Intraocular retinoblastoma is classified and staged to help doctors describe the degree of cancer in a child’s eye, determine best treatment options, define potential for cure / eye salvage, and compare impact of different therapies. Each eye is classified to define potential for safely saving the eye / vision. Stage of bilateral Rb is based on the worst affected eye, as an indicator of risk to the child’s life. When an eye might be classified into one of two groups, the higher risk group should be selected. This reduces risk of eye loss or life threatening relapse due to under-treatment.

A baby has one red pupil and one white pupul - the classic early sign of eye cancer in children.

PhotoRED: Know the Glow and Check for Normal Fundal Reflex in Children.

Taking photographs to check for red eye reflex is one of the best ways parents can detect early signs of serious eye disease in young children. Here we explain red eye photography and the simple technique all parents should know to check for healthy red reflex in children.

A baby has one red pupil and one white pupul - the classic early sign of eye cancer in children.

White Eye Glow in Photos: how and when to act!

Butterfly feeding from a cactus flower

The Cactus and the Butterfly: Advocating Best Care for America’s Children.

In early 2013, treatment was cancelled without warning for several Arizona children receiving care at Children’s Hospital of Los Angeles. No alternative plans were offered for essential life / sight saving therapy. The families approached Daisy’s Eye Cancer Fund for help. Read on to find out how we worked on their behalf to protect the children’s access to high quality on-going care.

An individual without information cannot take responsibility. An individual with information can't help but take responsibility.

DIY Guide to Assess Medical Information and Research (Part 1)