The Global Eye.
The Global Eye is a new way to keep up-to-date with what is happening in the world or retinoblastoma outreach. Each issue will be packed with news of research, awareness activities, children’s stories and advice for parents from around the world.
At the end of January, St Jude Children’s Research Hospital hosted a ground-breaking conference that brought together the international retinoblastoma community. One World: One Vision created a forum for discussion of treatment programs worldwide, and the importance of collaborative work between centres of excellence in resource rich countries and treatment programs in countries with limited resources. Carlos Rodriguez-Galindo MD, retinoblastoma oncologist at St Jude, and director of the hospital’s Mexico Outreach Program, reviews the conference.
Cancer registries are a vital tool in the development of understanding about cancer. They can monitor incidence, response to treatment and factors which affect diagnosis and outcome. This information is an important aid to the development of better approaches to diagnosis, treatment and follow-up care for children. Brenda Galle MD and Abby White examine the importance of a World Retinoblastoma Registry in the advancement of care for all affected children.
Daisy’s Eye Cancer Fund began because of one little girl from Botswana, who set us the challenge of improving care for children in Africa. In Autumn 2006, we launched Rati’s Challenge with a fact-finding mission and awareness raising pilot study in Kenya. Brenda Gallie MD looks back at one life-changing week in East Africa.
Libby and Ella are retinoblastoma survivors - miracle sisters from Michigan, with unique stories to tell. Diagnosed with trilateral retinoblastoma at 8months old, Libby was given a less than 2% chance of survival. Next month, she will celebrate two years cancer-free. Baby sister Ella was delivered 6 weeks early due to diagnosis of tumours in both eyes on a special ultrasound scan. The premature delivery enabled early treatment of her tumours.
Lele’s Story.
6,500miles away from Michigan, in Beijing, China, Lele was diagnosed with retinoblastoma in one eye. His parents’ quick response saved their son’s life. Then Lele’s father joined an online retinoblastoma community, a move which would lead to a fundamental change in practice at one of China’s biggest hospitals.
An estimated 70-80% of children with retinoblastoma lose one or both eyes to the cancer. In this first edition, Focused Care answers some of the most commonly asked questions about the process of enucleation and how to handle the healing post-surgery.
In each edition of The Global Eye, Certified Child Life Specialist, Morgan Livingstone, will examine different aspects of effective support for children affected by retinoblastoma. In this first edition, we examine what a child life specialist is, what she does and why she should be considered a vital member of the child’s clinical care team.
Comfort positioning.
Positioning for comfort is an important aspect of support to infants and children undergoing invasive medical procedures. Morgan Livingstone CCLS explains different techniques that the caregiver and medical professional can use, and the benefits of utilising such an approach.
Awareness is the vital first step to improving early diagnosis of retinoblastoma. Early diagnosis saves lives, and increases the chances of saving vision. Paediatric oncologist Linda Wainwright explains how the retinoblastoma community at Chris-Hani Baragwanath Hospital in Soweto will be embracing World Retinoblastoma Awareness Week next month.
Last year, four-year-old Rati was honoured as the first World Rb Citizen. This humanitarian award recognises individuals or teams whose volunteer commitment, courage and dedication is making a difference to children affected by retinoblastoma around the world. Read Rati’s inspirational story, and find out how you can nominate someone special to receive the 2007 award.
Pull out your colouring pencils for some fun colouring in as teddy gets some special medical attention..
A selection of your letters from the mail bag
A list of happenings in the global retinoblastoma community.
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