Tag Archive for: Ocular Oncology

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.

a baby plays with an anaesthetic mask

7 Ways Caregivers Can Support Infant Mental Health during Cancer Care.

Infants experience a wide range of emotions, the depths of which are just beginning to be understood. Morgan Livingstone CCLS discusses how the external environment influences infant mental health, and the varied ways parents and medical professionals can help babies cope and thrive through medical interventions.

"I need more sleep." Cat sleeping with head rested on a typewriter.

Sleep, Photosensitivity and Retinoblastoma

The body’s sensitive biological clock regulates sleep, which is vital to our physical and mental health. Dr. Iona Alexander explores how some effects of retinoblastoma treatment may disrupt this highly tuned system, and invites survivors to help researchers understand the relationship between these effects and sleep.

Life as a Registered Mom

On Saturday 12 May, International Nurses Day celebrates the incredible life-saving, life-changing work of nurses around the world. Janine Patterson shares the uncommon experience, benefit and burden of being a nurse when your child is diagnosed with cancer, and important things she has learned along the way.

Tree of Life - thr trunk of the tree is a DNA double helix

How DNA and Genetic Knowledge Changes Lives: the impact of genetic testing for five families affected by retinoblastoma

Retinoblastoma survivor and WE C Hope co-founder / CEO, Abby White, considers the central importance of DNA and genetic knowledge in caring for the child and family. She introduces us to Alice, Jamie, Megan, Rachel, Peter and their families, to find out how genetic testing can influence treatment, screening and lifelong care.

“Grief is in two parts. The first is loss. The second is the remaking of life.” Anne Roiphe

Make Space for Grief: Honour the place you are in

Linda Conyard MGestT explores the grief that can arise from retinoblastoma diagnosis, treatment, eye removal surgery, loss of innocence, and mutilated family life. She considers the potential harm of suppressing this grief, and offers both families/survivors and medical professionals ways to prevent prolonged suffering.

The Informed Parent: 6 Tips for Staying Up to Date in a Social Media World

Google and social media play an increasingly significant role in the lives of families affected by retinoblastoma, but without careful use, they can complicate a child’s medical care and even put life at risk. Dr. Jesse Berry shares her recommendations for being a safely informed parent advocate in the modern hyper-connected age.

A diagram showing DePict in the midlle, next to the patient, and all members of the care team who can interact with the system to enhance the child's care. All care is underpinned by child life support.

DePICT the Cancer Care Journey: Overcome Rarity Through Collaborative Research

Brenda Gallie, global leader in retinoblastoma clinical care, research and innovation, discusses an exciting technology promising to improve care during treatment and beyond. DePICTRB supports collaboration among the child’s entire circle of care, gives parents open access to their child’s record, and empowers clinical research.