Examinations Under Anaesthetic (EUA) are an essential part of retinoblastoma diagnosis, treatment, and surveillance follow up care. Combining content from our Child Life Resource, Morgan Livingstone CCLS CIMI MA reviews 10 ways parents can support children of all ages through the experience to benefit everyone’s wellbeing.
https://wechope.org/wp-content/uploads/2019/02/CRRAB-jan-2019-156.jpg40323024Abbyhttps://wechope.org/wp-content/uploads/2015/08/WeCH-Logo-web2.jpgAbby2019-03-04 08:41:072020-04-27 10:15:5010 Ways to Support Your Child Through EUA for Retinoblastoma
Talking about a child’s cancer with family and friends can be deeply cathartic for parents one day, and utterly exhausting the next. Asking for and receiving help can be a minefield too. Morgan Livingstone CCLS explores why this is so, and offers tips and tools to reduce stress, improve coping and boost effective practical support.
https://wechope.org/wp-content/uploads/2019/01/Whole-Family-Affected.png420668Abbyhttps://wechope.org/wp-content/uploads/2015/08/WeCH-Logo-web2.jpgAbby2019-02-04 08:49:302022-02-28 00:06:15Talking About Your Child’s Cancer Diagnosis With Family and Friends
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.jpg10241280Abbyhttps://wechope.org/wp-content/uploads/2015/08/WeCH-Logo-web2.jpgAbby2018-12-22 15:20:522020-04-27 10:21:36Our 2018 Blog Year in Review
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.
https://wechope.org/wp-content/uploads/2018/12/Anaesthetic-Mask-Play.jpg567712Abbyhttps://wechope.org/wp-content/uploads/2015/08/WeCH-Logo-web2.jpgAbby2018-12-08 22:09:472020-04-27 10:27:5910 Commonly Confused Retinoblastoma Terms, What They Mean and Why Getting Them Right Matters.
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.
https://wechope.org/wp-content/uploads/2018/11/Esotropia1.jpg496550Abbyhttps://wechope.org/wp-content/uploads/2015/08/WeCH-Logo-web2.jpgAbby2018-11-25 09:43:422020-04-27 10:27:548 Commonly Confused Retinoblastoma Terms, What They Mean and Why Getting Them Right Matters.
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.
https://wechope.org/wp-content/uploads/2018/10/Family-Day.jpg500624Abbyhttps://wechope.org/wp-content/uploads/2015/08/WeCH-Logo-web2.jpgAbby2018-11-11 13:57:442020-04-27 10:32:59Shaping Retinoblastoma Research Development Through Patient Engagement
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.
https://wechope.org/wp-content/uploads/2017/05/IAC-1b-Regression-of-recurrence-after-3-IAC.jpg523579Abbyhttps://wechope.org/wp-content/uploads/2015/08/WeCH-Logo-web2.jpgAbby2018-09-30 10:14:342020-04-27 10:34:51Intra-Arterial Chemotherapy (IAC) for Retinoblastoma Made Simple
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.
https://wechope.org/wp-content/uploads/2018/09/Damian-2.jpg960720Abbyhttps://wechope.org/wp-content/uploads/2015/08/WeCH-Logo-web2.jpgAbby2018-09-15 19:47:592020-04-27 10:36:50Always Life Before Eye – So Why Are Curable Children Dying?
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.
10 Ways to Support Your Child Through EUA for Retinoblastoma
Examinations Under Anaesthetic (EUA) are an essential part of retinoblastoma diagnosis, treatment, and surveillance follow up care. Combining content from our Child Life Resource, Morgan Livingstone CCLS CIMI MA reviews 10 ways parents can support children of all ages through the experience to benefit everyone’s wellbeing.
Talking About Your Child’s Cancer Diagnosis With Family and Friends
Talking about a child’s cancer with family and friends can be deeply cathartic for parents one day, and utterly exhausting the next. Asking for and receiving help can be a minefield too. Morgan Livingstone CCLS explores why this is so, and offers tips and tools to reduce stress, improve coping and boost effective practical support.
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.
10 Commonly Confused Retinoblastoma Terms, What They Mean and Why Getting Them Right Matters.
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.
8 Commonly Confused Retinoblastoma Terms, What They Mean and Why Getting Them Right Matters.
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.
Shaping Retinoblastoma Research Development Through Patient Engagement
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.
Intra-Arterial Chemotherapy (IAC) for Retinoblastoma Made Simple
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.
Always Life Before Eye – So Why Are Curable Children Dying?
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 Retinoblastoma Rollercoaster
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.