As the COVID-19 pandemic continues, people worldwide are grappling with isolation, uncertainty, fear, and grief – for a lost way of life, and for relatives and friends. In these tough times, just like the retinoblastoma journey, nurturing joy is vital to help mind and body release tension and nourish hope. Morgan Livingstone CCLS explains why joy is a superpower, and how we can nurture it in ourselves and others.
A retinoblastoma diagnosis is distressing for a family, its effects often lifelong. CHECT Support Workers help families and individuals in the UK, from diagnosis and throughout life. Support Service Manager, Lesley Geen, describes how CHECT Support Workers collaborate with the medical team to care for the whole family, and the different support services offered at each stage of life.
From the moment a child is diagnosed with retinoblastoma, even from when their parent first takes them to the doctor, life is a rollercoaster, a whirlwind of information, decisions, and grief. Sandra Staffieri describes her role as Retinoblastoma Care Co-ordinator at the Royal Children’s Hospital, Melbourne, how the role evolved, challenges faced, and the unexpected joys experienced despite it all.
Children with cancer experience invasive procedures and stressful events throughout their medical care that can impact their ability to cope, inhibit their development and negatively affect their health and well-being throughout life. Child life supports effective healthcare and reduces trauma. Morgan Livingstone CCLS describes how WE C Hope is bringing hope through Child Life to children and their families in Africa.
When someone asks for support on social media, instincts drives us to offer hopeful solutions. But without full knowledge and understanding, we may cause more harm than help. Reviewing real interactions and their outcomes, WE C Hope CEO, Abby White, shares key points to consider when discussing retinoblastoma, and how to respond well.
How we respond to one another in retinoblastoma support forums, and the information we share, can significantly impact patient care and outcomes. Abby White shares 7 ways we can respond positively to any social media request for help, to improve communication, support, and best care for the child/survivor and family.
Children with vision loss from retinoblastoma need accommodations and extra support to access online learning and thrive in the virtual school world. Rb survivor and Orientation and Mobility Specialist, Jessica Givens, explores key challenges of online education, and the best ways to help children reach their potential in the virtual classroom.
When we are anxious or angry, we tense up and hold our breath, or breathe fast and shallow, further increasing stress. Slow, deep breathing almost instantly diffuses tension, helping us feel calm, clear-headed and in control. Abby White explores why our bodies react this way, and how we can use our breath to restore calm fast.
After a year of publishing the #FamilyInSight Alphabet of Hope, we bring you the complete collection of 2020 Entries. This is the third #AlphabetOfHope. WE C Hope CEO, Abby White looks back at the alphabet’s genesis, and the insight, wisdom and motivation this literary project brings to the retinoblastoma community.
2020 has been eventful and challenging for the whole world. Throughout, WE C Hope has continued to serve, unite and advance our global retinoblastoma community. WE C Hope USA President and retinoblastoma survivor, Marissa Gonzalez, reflects on the year’s highlights with thanks, and shares some plans for the coming year.