Artistic tree in white and gold ribbon on red background, surrounded by snow and tiny and large snowflakes. Below, a wave of opaque white ribbon flows across the image.

Our 2018 Blog Year in Review

The WE C Hope blog has been busy in 2018. We’ve shared 24 posts from 17 authors – parents, survivors, researchers or professionals providing retinoblastoma-related care. Each has brought valuable experience, knowledge and perspective, and we are very thankful to them all. Here is a recap of posts we’ve shared in the past 12 months.

a baby plays with an anaesthetic mask

10 Commonly Confused Retinoblastoma Terms, What They Mean and Why Getting Them Right Matters.

Do you know the difference between a biopsy and pathology, or an RB1 gene deletion and Chromosome 13q deletion? Do you know how a retinoma becomes retinoblastoma or when remission becomes cure? In Part 2 of a mini-series, WE C Hope CEO Abby White explains these and other terms, and why using them correctly is important.

A baby has a squint - the right eye is rutned in towards the nose.

8 Commonly Confused Retinoblastoma Terms, What They Mean and Why Getting Them Right Matters.

Do you know the difference between lazy eye and squint, or an ocular oncologist and a paediatric oncologist? Do you know when extraocular Rb becomes metastatic, or why trilateral Rb is neither of these? In Part 1 of a mini-series, WE C Hope CEO Abby White explains these and other terms, and why using them correctly is important.

Workshop attendees gather for a group photo.

Shaping Retinoblastoma Research Development Through Patient Engagement

Parents and survivors have valuable lived experience that can shape retinoblastoma research to improve health outcomes. Kaitlyn Flegg reviews progress of the innovative Canadian Retinoblastoma Research Advisory Board, where parent and survivor priorities are setting the research agenda.

Destigmatizing Vision Loss Within the Retinoblastoma Community

Vision loss is a major part of the retinoblastoma experience, but rarely discussed in depth within our community. Sassy Outwater-Wright explores the trauma of vision loss, the experience of living with reduced or no sight, and pathways to living well at every age and stage of sight-loss.

Thr same eye after treatment - the fuzzy cloud has disappeared.

Intra-Arterial Chemotherapy (IAC) for Retinoblastoma Made Simple

Intra-arterial chemotherapy (IAC) offers potential to save eyes and sight in children with retinoblastoma, when life is not at risk. Through the FAQ of this treatment, Sameh Soliman, MD reviews its goals, indications for use, benefits, risks and limitations, and offers resources for further reading.

Damian

Always Life Before Eye – So Why Are Curable Children Dying?

Progress of eye-saving treatments for retinoblastoma is very exciting, but an increasing number of curable children are developing metastatic relapse and dying after eye-salvage therapy. With parent experiences woven throughout, Retinoblastoma survivor Abby White, asks why this is happening and what can be done to prevent it.

View from a rollercoaster about to drop down steeply towards a river bathed in sunlight and surrounded by verdure.

The Retinoblastoma Rollercoaster

The rollercoaster ride is unexpected, wild and frightening when a child is diagnosed with retinoblastoma. The greatest comfort is knowing you are not alone on the journey. Lori Baños, creator and moderator of the Facebook group Rb Moms, reflects on the experience, with insightful contributions from group members.

Rowan and Harry sit at a table, chatting.

Friendships Through Retinoblastoma

A diagnosis of childhood cancer can leave parents feeling adrift and utterly alone. The friends who walk with them through their child’s medical care are often cherished lifelong, and from a central thread in their own healing. Megan Santos reflects on the many friendships formed before, during and after her daughter’s treatment for retinoblastoma.

Two young girls, one Caucasian, one African, recline together on a blue sofa, smiling.

Challenging the Global Retinoblastoma Burden on World Population Day

July 11, World Population Day, focuses attention on the urgency and importance of population issues. Helen Dimaras Ph.D considers the effect of our expanding global population on the expected numbers of children who will develop eye cancer each year, and the provision of effective care to meet their needs.