For many individuals diagnosed with retinoblastoma, sight-loss means braille is the primary means of reading and writing. In celebration of World Braille Day on Friday January 4th, Rb survivor Ffion Miles introduces us to a very special relationship she has with six tiny dots, and the marvellous adventures they’ve shared together.
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.
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.
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.
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.
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.
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.
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.
