Many children and teenagers experience anxiety with medical interactions after retinoblastoma diagnosis. Pediatric registered nurse and child life intern, Michelle Badejo, describes how hospital anxiety can manifest, and explores how parents can help them cope, be active participants in their ongoing care, and raise their quality of life.
https://wechope.org/wp-content/uploads/2019/10/MedicAl-play-with-doll.jpg30244032Abby Whitehttps://wechope.org/wp-content/uploads/2015/08/WeCH-Logo-web2.jpgAbby White2019-10-14 09:45:592020-04-27 09:54:106 Ways to Help Older Children and Teens Cope With and Conquer Hospital Anxiety
Retinoblastoma is highly curable, but lifelong impacts are significant for survivors, siblings, parents and extended family. After a particularly painful personal insight, Rb survivor and WE C Hope CEO Abby White asked families and survivors about their own experiences of life beyond childhood eye cancer care.
Individuals who carry an RB1 mutation have a 50% chance of passing the retinoblastoma cancer syndrome on to each child. Melissa Mills, bilateral retinoblastoma survivor and genetic counsellor, explores the psychological and physical impacts of this experience, and the different routes to creating a family when a prospective parent has an RB1 mutation.
https://wechope.org/wp-content/uploads/2019/09/AIMH-Baby.jpg599900Abby Whitehttps://wechope.org/wp-content/uploads/2015/08/WeCH-Logo-web2.jpgAbby White2019-09-16 06:22:002025-03-13 20:24:35How Do I Create A Family When I Have An RB1 Mutation?
Local in-person support specific to the needs of families and survivors affected by retinoblastoma is much needed but very rare. Lisa Hester, mother of a young Rb survivor, reflects on the second WE C Hope California Family Day, held in August 2019, the seeds of our mission to bring this support to all across America.
https://wechope.org/wp-content/uploads/2019/08/CA-Family-Day-5.jpg12801920Abby Whitehttps://wechope.org/wp-content/uploads/2015/08/WeCH-Logo-web2.jpgAbby White2019-09-02 07:18:042020-04-27 10:02:05A Day Well Spent – California Family Day
A diagnosis of childhood eye cancer impacts families in so many ways, during the immediate crisis of treatment, and years after “cure”. Knowing you are not alone on the journey is the greatest comfort and strength. Five mothers reflect on the healing power of Camp Sunshine, a retreat that cares for the entire family when cancer strikes.
Strabismus (turned eye) and leukocoria (white pupil), the most common signs of retinoblastoma, can also occur in healthy eyes. Sandra Staffieri, Retinoblastoma Care Co-ordinator at the Royal Children’s Hospital, Melbourne, examines both and answers the key question – when should parents and doctors be concerned?
https://wechope.org/wp-content/uploads/2019/05/Harry-Lisa-Stephenson-Squint-Leukocoria.jpg452465Abby Whitehttps://wechope.org/wp-content/uploads/2015/08/WeCH-Logo-web2.jpgAbby White2019-05-12 15:21:522024-06-16 22:03:54When ‘Something’ Looks the Same As ‘Nothing’: Strabismus, Leukocoria and Childhood Eye Cancer
Annie, an important member of our team, retired on April 15th. Abby White, retinoblastoma survivor, WE C Hope founder and volunteer CEO, reflects on working with her guide dog for seven years. She considers the many varied gifts Annie has brought to both herself as an individual retinoblastoma survivor, and to WE C Hope.
https://wechope.org/wp-content/uploads/2019/04/Table-Mountain1.jpg15831203Abby Whitehttps://wechope.org/wp-content/uploads/2015/08/WeCH-Logo-web2.jpgAbby White2019-04-29 20:56:122020-04-27 10:11:42Celebrating Annie: Guide Dog Retires from WE C Hope Team
Just 3 paediatric oncologists serve Ghana’s population of 29 million, but this dedicated team leads one of the best childhood cancer programs in West Africa. Dr. Vera Essuman (paediatric ophthalmologist) and Prof. Lorna Renner (paediatric oncologist) discuss retinoblastoma in Ghana and the development of care for children with eye cancer across the country.
https://wechope.org/wp-content/uploads/2019/03/Latifa-and-Mother.jpg11251500Abby Whitehttps://wechope.org/wp-content/uploads/2015/08/WeCH-Logo-web2.jpgAbby White2019-04-01 09:40:422023-11-27 13:53:24Retinoblastoma in Ghana: Saving Children’s Life and Sight
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.
The WE C Hope blog has been busy in 2018. We’ve shared 24 posts from 17 authors – parents, survivors, researchers or professionals providing retinoblastoma-related care. Each has brought valuable experience, knowledge and perspective, and we are very thankful to them all. Here is a recap of posts we’ve shared in the past 12 months.
https://wechope.org/wp-content/uploads/2018/12/new-year-020.jpg10241280Abby Whitehttps://wechope.org/wp-content/uploads/2015/08/WeCH-Logo-web2.jpgAbby White2018-12-22 15:20:522025-09-10 16:46:59Our 2018 Blog Year in Review
6 Ways to Help Older Children and Teens Cope With and Conquer Hospital Anxiety
Many children and teenagers experience anxiety with medical interactions after retinoblastoma diagnosis. Pediatric registered nurse and child life intern, Michelle Badejo, describes how hospital anxiety can manifest, and explores how parents can help them cope, be active participants in their ongoing care, and raise their quality of life.
When Survivors Grow Up: Family Experiences After Retinoblastoma
Retinoblastoma is highly curable, but lifelong impacts are significant for survivors, siblings, parents and extended family. After a particularly painful personal insight, Rb survivor and WE C Hope CEO Abby White asked families and survivors about their own experiences of life beyond childhood eye cancer care.
How Do I Create A Family When I Have An RB1 Mutation?
Individuals who carry an RB1 mutation have a 50% chance of passing the retinoblastoma cancer syndrome on to each child. Melissa Mills, bilateral retinoblastoma survivor and genetic counsellor, explores the psychological and physical impacts of this experience, and the different routes to creating a family when a prospective parent has an RB1 mutation.
A Day Well Spent – California Family Day
Local in-person support specific to the needs of families and survivors affected by retinoblastoma is much needed but very rare. Lisa Hester, mother of a young Rb survivor, reflects on the second WE C Hope California Family Day, held in August 2019, the seeds of our mission to bring this support to all across America.
Reflections of Camp Sunshine by Rb Moms
A diagnosis of childhood eye cancer impacts families in so many ways, during the immediate crisis of treatment, and years after “cure”. Knowing you are not alone on the journey is the greatest comfort and strength. Five mothers reflect on the healing power of Camp Sunshine, a retreat that cares for the entire family when cancer strikes.
When ‘Something’ Looks the Same As ‘Nothing’: Strabismus, Leukocoria and Childhood Eye Cancer
Strabismus (turned eye) and leukocoria (white pupil), the most common signs of retinoblastoma, can also occur in healthy eyes. Sandra Staffieri, Retinoblastoma Care Co-ordinator at the Royal Children’s Hospital, Melbourne, examines both and answers the key question – when should parents and doctors be concerned?
Celebrating Annie: Guide Dog Retires from WE C Hope Team
Annie, an important member of our team, retired on April 15th. Abby White, retinoblastoma survivor, WE C Hope founder and volunteer CEO, reflects on working with her guide dog for seven years. She considers the many varied gifts Annie has brought to both herself as an individual retinoblastoma survivor, and to WE C Hope.
Retinoblastoma in Ghana: Saving Children’s Life and Sight
Just 3 paediatric oncologists serve Ghana’s population of 29 million, but this dedicated team leads one of the best childhood cancer programs in West Africa. Dr. Vera Essuman (paediatric ophthalmologist) and Prof. Lorna Renner (paediatric oncologist) discuss retinoblastoma in Ghana and the development of care for children with eye cancer across the country.
Father Braille: A Wonderfully Dotty Relationship
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.
Our 2018 Blog Year in Review
The WE C Hope blog has been busy in 2018. We’ve shared 24 posts from 17 authors – parents, survivors, researchers or professionals providing retinoblastoma-related care. Each has brought valuable experience, knowledge and perspective, and we are very thankful to them all. Here is a recap of posts we’ve shared in the past 12 months.