Three young girls sit one behind the other as they enjoy riding together down a slide. The girl at the back has curly brown hair and wears a light pink sweater. The middle girl has blonde hair and wears a light purple shirt. The girl in front has light brown hair, wears a pink top, and holds a plaid cushion. They are surrounded by green foliage and trees in the background. The sun creates halos around their hair as it blows with their movement down the slide, and blue sky is seen in the top right corner, beyond the trees..

Parents and Survivors Can Help Doctors Create Great Retinoblastoma Care

Being the parent of a child with retinoblastoma, or living with the effects of this cancer, can be frustrating. We look at a few challenges and ways we can help the medical community advance care.

A fuzzy cloud shows recurrence of a previously treated tumour.

Visualizing Cancer Treatment

Have you ever wondered what happens in a child’s eye during retinoblastoma treatment? We explore four of the most common eye-saving treatments here. Below each, you will find a link to further information that includes advantages, disadvantages, side effects and questions to ask the doctor.

This image has two sections. The top portion is a pictorial description of the TNM Staging, and comparison with the IIRC (comparison in brackets). Six images show progression of cancer through the different TNM stages, from small tumours confined to the retina in T1a (A) and T1b (B) to large tumours and seeds in T2a (C/C) and T2b (C/D). These first four images are grouped as “intraocular”. T3a-e (E) shows distress to tissue surrounding the eye. This image is indicated as high risk for extraocular spread. T4 (no IIRC comparison) shows an eye that has ruptured completely. This last image is described as extraocular. The lower section of the image shows average age at diagnosis in developed and developing countries, and the timeline to extraocular spread. The smiling child on the left is pictured with white pupil. The caption below reads: “North America: Unilateral Dx mean 27 mo | Bilateral Dx mean 15 mo”. The child on the right has a completely ruptured eye. The caption below reads “Kenya: Unilateral Dx mean 36 mo | Bilateral Dx mean 26 mo”. An arrow points from the left to right photo and reads “6 to 11 mo DELAY dx”.

Staging Intraocular Retinoblastoma

Retinoblastoma is staged to help doctors describe the degree of cancer in a child’s body, define potential for cure / eye salvage, determine best treatments, and compare impact of different therapies. Each eye is staged separately to define potential for safely saving the eye and vision.

Poster showing a child with one eye glowing white and the other, red. Caption above reads "a white glow in a child's eye could be a sign of cancer". Instructions below describe the PhotoRED technique.

How Do We Achieve Early Diagnosis of Retinoblastoma?

Retinoblastoma specialists agree that early diagnosis of eye cancer is a child’s best hope of survival, retaining some vision or their eye. Yet around the world, thousands of children die, and more than half of children who are cured lose at least one eye. We consider the potential and limitations of six solutions to improve early diagnosis.

Dublin Convention Centre was lit up gold every night during the SIOP World Congress, celebrating the childhood cancer gold ribbon.

Alfred Knudson Memorial Session

A special session at the 2016 World Congress of Paediatric Oncology was hosted in memoriam of Alfred G. Knudson, Jr., MD, PhD, who died in July. Knudson developed his “two-hit hypothesis” after years of observing children with retinoblastoma, and this now forms the backbone of cancer genetics. The session focused on most effective staging for retinoblastoma, identifying and treating high risk children.

SIOP Welcome Signs

SIOP World Congress 2016

The International Society of Paediatric Oncology World Congress promotes a holistic approach to care. Through a unique collaboration of multiple diverse organizations, the program embraces almost every element of childhood cancer care and survivorship. Dublin hosted an inspired SIOP 2016 congress, October 19-22, a global village with a united voice and energy for all children and their families.

One Retinoblastoma World, Dublin 2016 – Part 2

Dublin, Day 2 of One Retinoblastoma World 2016, a global meeting of highly committed retinoblastoma advocates. Focused on best care for everyone, we discussed common sense primary treatment and the pros and cons of eye salvage for child and eye, building effective care in developing countries, innovations for global care, and the pathway to progress for our global community.

Rachel Brennan

One Retinoblastoma World, Dublin 2016 – Part 1

The land of 100,000 welcomes warmly greeted our global childhood eye cancer community in October. Dublin enthusiastically hosted One Retinoblastoma World 2016, before the world congress of the International Society of Paediatric Oncology. A meeting of highly committed doctors, parents, survivors, researchers and advocates from six continents, focused on best care for everyone affected by retinoblastoma.

We Mourn the Loss of Dr. Barrett Haik, a Great Rb Physician.

The retinoblastoma world lost a dedicated physician and friend on Friday, July 22nd. Dr Barrett Haik was a highly skilled ophthalmic surgeon, researcher, educator, mentor and fundraiser who cared deeply for the children, adults and families he treated. He led development of the ophthalmic oncology service at St. Jude Children’s Research Hospital, and supported international outreach that has improved the lives of thousands of children with retinoblastoma across the USA and around the world.

"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.