WE C Hope Blog
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.
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.
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.
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.
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.
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.
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.
Babies and young children rely on all their senses for learning and development, communication, comfort and coping. Jocelyn Leworthy, RECE, CIMI explores the role our senses play in daily life and development from our earliest days, and how we can encourage fun sensory stimulation to nourish young lives.
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.
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.