Our 2018 Blog Year in Review
Warmest Season’s Greetings friends! This year has flown by so fast, and suddenly we are preparing our last blog of 2018 – where does the time go?
2018 has been a busy year for the WE C Hope blog. We’ve shared 24 posts throughout the year (not including this one), including three previously published articles. We’ve been delighted to publish a total of 17 authors who are either 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 for giving their precious time and energy.
We hope you have enjoyed reading our blog this year, and found the content interesting and useful. We’re already well into planning the blog for next year and aim to bring you more articles on psychosocial supports, family experiences, survivor perspectives and medical care. We look forward to sharing those articles with you, and to hearing your feedback – here on the blog or via our social media.
In case you missed any of our blogs throughout this year, below is a recap of the articles we’ve shared during the past 12 months.
Our entire WE C Hope team across the world wishes you a very joyful end to 2018, and abundant blessings in 2019.
December 31 throughout January
New beginnings, hopes, dreams, possibilities, resolutions. January is an ideal time to explore how we can make our daily lives happier. Our volunteer CEO, Abby White, shared New Year greetings, tips for a happier 2018, and a personal message of change as the New Year began. We updated this blog in December 2018 to include related independent self-care blogs and other content shared weekly throughout the year.
What does it mean to be told your 12 week old baby has a rare eye cancer? Jim Valavanis shared his experience of first-time parenting, nearly five years of childhood cancer treatment, and Life Through Sam’s Eyes – the hope-filled book that emerged from his healing journey.
When Sandra Staffieri left Australia in August 2012 for a conference in Italy and a tour of retinoblastoma centres in North America, she had no idea how radically the journey would change her life and care at the Royal Children’s Hospital, Melbourne. Yet as she departed, the key destination was not even on her itinerary…
Brenda Gallie, global leader in retinoblastoma clinical care, research and innovation, discussed 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.
Google and social media play an increasingly significant role in the lives of families affected by retinoblastoma, but without careful use, they can complicate a child’s medical care and even put life at risk. Dr. Jesse Berry shared her recommendations for being a safely informed parent advocate in the modern hyper-connected age.
Since the 1930s, Doctors Day (March 30) has recognized the contributions of physicians to the individual lives and communities they serve. Retinoblastoma survivor and WE C Hope USA President, Marissa Gonzalez, shared her experience of collaborating with doctors and medical staff to treat, cure and recover from cancer.
Linda Conyard MGestT explored the grief that can arise from retinoblastoma diagnosis, treatment, eye removal surgery, loss of innocence, and mutilated family life. She considerd the potential harm of suppressing this grief, and offered both families/survivors and medical professionals ways to prevent prolonged suffering.
How DNA and Genetic Knowledge Changes Lives: the impact of genetic testing for five families affected by retinoblastoma
Retinoblastoma survivor and WE C Hope co-founder / CEO, Abby White, considered the central importance of DNA and genetic knowledge in caring for the child and family. She introduced us to Alice, Jamie, Megan, Rachel, Peter and their families, to find out how genetic testing can influence treatment, screening and lifelong care.
On Saturday 12 May, International Nurses Day celebrated the incredible life-saving, life-changing work of nurses around the world. Janine Patterson shared 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.
The body’s sensitive biological clock regulates sleep, which is vital to our physical and mental health. Dr. Iona Alexander explored how some effects of retinoblastoma treatment may disrupt this highly tuned system, and invited survivors to help researchers understand the relationship between these effects and sleep.
Infants experience a wide range of emotions, the depths of which are just beginning to be understood. Morgan Livingstone CCLS discussed 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.
Babies and young children rely on all their senses for learning and development, communication, comfort and coping. Jocelyn Leworthy, RECE, CIMI explored 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.
July 11, World Population Day, focused attention on the urgency and importance of population issues. Helen Dimaras Ph.D considered the effect of our expanding global population on the expected numbers of children who will develop eye cancer each year, and the provision of effective care to meet their needs.
Have you ever wondered what happens in a child’s eye during retinoblastoma treatment? Re-sharing a post originally published in May 2017, we explored four of the most common eye-saving treatments. Including images of treatment in progress, and links to further information about the advantages, disadvantages, side effects of each, and questions to ask the doctor.
A diagnosis of childhood cancer can leave parents feeling adrift and utterly alone. The friends who walk with them through their child’s medical care are often cherished lifelong, and from a central thread in their own healing. Megan Santos reflected on the many friendships formed before, during and after her daughter’s treatment for retinoblastoma.
Childhood cancer is the leading disease killer of children in developed countries; second most common among children aged 1 to 15 in developing countries. With statistics and insights from parents and survivors, we explored the realities around the world. This blog was originally published in September 2017.
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, reflected on the experience, with insightful contributions from group members.
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, asked why this is happening and what can be done to prevent it.
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 reviewed its goals, indications for use, benefits, risks and limitations, and offered resources for further reading.
Retinoblastoma is staged to help doctors describe the degree of cancer in a child’s body, define potential for cure / eye salvage, determine best treatments, and compare impact of different therapies. Each eye is staged separately to define potential for safely saving the eye and vision. This blog was originally published in May 2017.
Vision loss is a major part of the retinoblastoma experience, but rarely discussed in depth within our community. Sassy Outwater-Wright explored the trauma of vision loss, the experience of living with reduced or no sight, and pathways to living well at every age and stage of sight-loss.
Parents and survivors have valuable lived experience that can shape retinoblastoma research to improve health outcomes. Kaitlyn Flegg reviewed progress of the innovative Canadian Retinoblastoma Research Advisory Board, where parent and survivor priorities are setting the research agenda.
8 Commonly Confused Retinoblastoma Terms, What They Mean and Why Getting Them Right Matters – Part 1
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 explained these and other terms, and why using them correctly is important.
10 Commonly Confused Retinoblastoma Terms, What They Mean and Why Getting Them Right Matters – Part 2
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 explained these and other terms, and why using them correctly is important.