Nearly all children with retinoblastoma have some degree of sight loss arising from the cancer and its treatment. Identifying outdoor activities they can fully engage with may be hard for families. Bilateral Rb Survivor, Abby White, shares 20 classic and creative activities that include blind and visually impaired children and help connect them with the natural world.
https://wechope.org/wp-content/uploads/2021/07/Smiling-Child-Yellow-Flowers-scaled.jpg17062560Abbyhttps://wechope.org/wp-content/uploads/2015/08/WeCH-Logo-web2.jpgAbby2021-07-19 10:09:222021-08-17 09:49:0420 Outdoor Activities for Blind and Visually Impaired Children
Hot weather and changing holiday routines – summer can be unsettling for babies and young children. Add retinoblastoma to the mix, and achieving good sleep at this time of year can be very hard for affected children and siblings. Morgan Livingstone CCLS explains how infant massage can help, offering specific practical ways to improve sleep during sultry summer months, whether or not a child is receiving cancer care.
For individuals living with the retinoblastoma cancer syndrome, childhood eye cancer is only the start of the story. Sharing personal experience and insight from fellow Rb survivors, Abby White explores key challenges encountered along the way, from working with doctors who do not understand the risk to psychological impacts, and the need for more effective care.
https://wechope.org/wp-content/uploads/2021/06/hallway3-scaled.jpg14402560Abbyhttps://wechope.org/wp-content/uploads/2015/08/WeCH-Logo-web2.jpgAbby2021-06-21 09:57:062021-06-21 11:32:03Living with the Retinoblastoma Cancer Syndrome Part 2: Risks, Impacts, Challenges and Opportunities
For individuals living with the retinoblastoma cancer syndrome, childhood eye cancer is only the start of the story. In the first of this two-part series, Rb survivor Abby White explores what the risk is and who it affects, the challenge of establishing personal risk, provision of lifelong follow up care, and early detection of second cancers. With contributions from fellow survivors.
https://wechope.org/wp-content/uploads/2021/06/IMG_1385-scaled.jpg15922560Abbyhttps://wechope.org/wp-content/uploads/2015/08/WeCH-Logo-web2.jpgAbby2021-06-07 10:12:482021-06-21 10:10:46Living with the Retinoblastoma Cancer Syndrome Part 1: Understanding the Risks and Lifelong Care
We are quick to support family and friends in a crisis with words of comfort, encouragement, and affirmation, and practical acts to care for their wellbeing, so why are we so reluctant to give ourselves the same support? Abby White explores the difference between self-compassion, self-care, and self-love, how they are connected, why they matter so much, and how we can cultivate them.
https://wechope.org/wp-content/uploads/2021/05/Earth-Light-Sunlight-through-heart-shaped-hole-in-clouds-credit-Giacomo-Bartalesi-Vibo-Valentia-Calabria-Italy.jpg660990Abbyhttps://wechope.org/wp-content/uploads/2015/08/WeCH-Logo-web2.jpgAbby2021-05-24 12:04:462021-05-24 20:57:46Who Cares? Becoming Your Best Friend with Compassion, Care and Love
Retinoblastoma Awareness Week promotes life and sight-saving early diagnosis. Sandra Staffieri, Rb Care Coordinator at the Royal Children’s Hospital Melbourne, highlights the importance of raising awareness among parents, caregivers, health professionals and survivors; and how lack of knowledge and delayed diagnosis can impact children, parents, and adults with second cancer risk.
https://wechope.org/wp-content/uploads/2021/05/Glint-Squint.jpg6301040Abbyhttps://wechope.org/wp-content/uploads/2015/08/WeCH-Logo-web2.jpgAbby2021-05-10 10:12:362021-05-12 02:22:39Eye of the Storm: the impact of ‘not knowing’ on mental health
We all need to be heard, but how often do we truly listen to ourselves? Living or working with retinoblastoma can be emotionally overwhelming. WE C Hope CEO and Rb survivor, Abby White, shares personal experience of some listening techniques that help her cope with daily challenging thoughts and strong emotions such as anger, fear and worry.
https://wechope.org/wp-content/uploads/2021/04/All-Ears-large.jpg643960Abbyhttps://wechope.org/wp-content/uploads/2015/08/WeCH-Logo-web2.jpgAbby2021-04-26 10:01:582021-04-26 11:27:23The Gift of Listening to Ourselves: how compassionate self-enquiry can reduce stress and help us heal
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.
https://wechope.org/wp-content/uploads/2021/04/Father-and-child-playing-cars-scaled.jpg17072560Abbyhttps://wechope.org/wp-content/uploads/2015/08/WeCH-Logo-web2.jpgAbby2021-04-12 10:10:192021-04-12 10:21:10Why Joy is a Superpower and How to Nurture Daily Joy - Even in Tough Times
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.
https://wechope.org/wp-content/uploads/2021/03/Lesley-with-family-at-hospital.png9001440Abbyhttps://wechope.org/wp-content/uploads/2015/08/WeCH-Logo-web2.jpgAbby2021-03-29 17:20:282021-06-24 20:35:05Childhood Eye Cancer Trust Support Workers: helping UK families and individuals through treatment and beyond
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.
https://wechope.org/wp-content/uploads/2021/03/Mila-Naus_blog1.jpg9001200Abbyhttps://wechope.org/wp-content/uploads/2015/08/WeCH-Logo-web2.jpgAbby2021-03-15 10:31:022021-06-24 20:36:48My life as a Retinoblastoma Care Co-ordinator
20 Outdoor Activities for Blind and Visually Impaired Children
/2 Comments/in Child Life, Hope, Living With Rb, Resources, Retinoblastoma, Support, Survivorship /by AbbyNearly all children with retinoblastoma have some degree of sight loss arising from the cancer and its treatment. Identifying outdoor activities they can fully engage with may be hard for families. Bilateral Rb Survivor, Abby White, shares 20 classic and creative activities that include blind and visually impaired children and help connect them with the natural world.
7 Infant Massage Tips for Improved Summer Sleep
/0 Comments/in Child Life, Hope, Living With Rb, Resources, Retinoblastoma, Support /by AbbyHot weather and changing holiday routines – summer can be unsettling for babies and young children. Add retinoblastoma to the mix, and achieving good sleep at this time of year can be very hard for affected children and siblings. Morgan Livingstone CCLS explains how infant massage can help, offering specific practical ways to improve sleep during sultry summer months, whether or not a child is receiving cancer care.
Living with the Retinoblastoma Cancer Syndrome Part 2: Risks, Impacts, Challenges and Opportunities
/0 Comments/in Awareness, Genetics, Hope, Living With Rb, Medical Care, Our Stories, Resources, Retinoblastoma, Support, Survivorship /by AbbyFor individuals living with the retinoblastoma cancer syndrome, childhood eye cancer is only the start of the story. Sharing personal experience and insight from fellow Rb survivors, Abby White explores key challenges encountered along the way, from working with doctors who do not understand the risk to psychological impacts, and the need for more effective care.
Living with the Retinoblastoma Cancer Syndrome Part 1: Understanding the Risks and Lifelong Care
/0 Comments/in Awareness, Genetics, Hope, Living With Rb, Medical Care, Our Stories, Resources, Retinoblastoma, Support, Survivorship /by AbbyFor individuals living with the retinoblastoma cancer syndrome, childhood eye cancer is only the start of the story. In the first of this two-part series, Rb survivor Abby White explores what the risk is and who it affects, the challenge of establishing personal risk, provision of lifelong follow up care, and early detection of second cancers. With contributions from fellow survivors.
Who Cares? Becoming Your Best Friend with Compassion, Care and Love
/0 Comments/in Hope, Living With Rb, Our Stories, Resources, Retinoblastoma, Support, Survivorship /by AbbyWe are quick to support family and friends in a crisis with words of comfort, encouragement, and affirmation, and practical acts to care for their wellbeing, so why are we so reluctant to give ourselves the same support? Abby White explores the difference between self-compassion, self-care, and self-love, how they are connected, why they matter so much, and how we can cultivate them.
Eye of the Storm: the impact of ‘not knowing’ on mental health
/0 Comments/in Awareness, Canada, Genetics, Hope, Kenya, Living With Rb, Medical Care, One Rb World, Our Stories, Research, Retinoblastoma, Support, Survivorship, UK, WE C Hope /by AbbyRetinoblastoma Awareness Week promotes life and sight-saving early diagnosis. Sandra Staffieri, Rb Care Coordinator at the Royal Children’s Hospital Melbourne, highlights the importance of raising awareness among parents, caregivers, health professionals and survivors; and how lack of knowledge and delayed diagnosis can impact children, parents, and adults with second cancer risk.
The Gift of Listening to Ourselves: how compassionate self-enquiry can reduce stress and help us heal
/0 Comments/in Awareness, Child Life, Hope, Living With Rb, Our Stories, Resources, Retinoblastoma, Support, Survivorship /by AbbyWe all need to be heard, but how often do we truly listen to ourselves? Living or working with retinoblastoma can be emotionally overwhelming. WE C Hope CEO and Rb survivor, Abby White, shares personal experience of some listening techniques that help her cope with daily challenging thoughts and strong emotions such as anger, fear and worry.
Why Joy is a Superpower and How to Nurture Daily Joy – Even in Tough Times
/0 Comments/in Child Life, Hope, Living With Rb, Resources, Retinoblastoma, Support, Survivorship /by AbbyAs 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.
Childhood Eye Cancer Trust Support Workers: helping UK families and individuals through treatment and beyond
/0 Comments/in Child Life, Hope, Living With Rb, Medical Care, Our Stories, Retinoblastoma, Support, Survivorship, UK /by AbbyA 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.
My life as a Retinoblastoma Care Co-ordinator
/0 Comments/in Child Life, Hope, Living With Rb, Medical Care, One Rb World, Our Stories, Retinoblastoma, Support, Survivorship, WE C Hope /by AbbyFrom 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.