Winter 2008
From the Mail Bag
The Global Eye.
Welcome
Eye Contact
Art for Eyes Paint Day
Toronto Bluejays Game
David M Bailey Concert
4th Annual Blind Ball
Harry’s Farewell.
Research Matters
Toronto Protocol
Eyes on the World
World Rb Awareness Week
In the Spotlight
Katy's Story
Brady's Story
Focused Care Q&A
Implants..
The Art of Child Life
Going to the Ocularist.
Snap Shot
Honduras.
World Rb Citizen
Timothy Murray MD
Kids Corner
Valentine Fun..
Points of View
Have Your Say.
Diary Dates
What's Happening?
The Language of Awareness
I am so happy to find that you have created a retinoblastoma awareness poster in Bengali. I had an eye removed as a baby because of unilateral Rb (treated in England) and now I work as a teacher in Bangladesh. I didn’t know much about my cancer so have been doing some research on the internet and found this poster in my mother tongue.
There Is almost no information for people in Bangladesh about unusual conditions like retinoblastoma, not in the familiar language of Bengali. Even for people who cannot read, they will see the clear picture and understand that something is not right that needs to be attended by a doctor. I have printed the poster and made copies to pass on for people to help tell parents about the white eye here in Chittangong. I also sent some to my family in Dhaka and London, so I hope we will help some families who do not know about this easy thing they can do to help their children.
Nazim Rasel, Chittangong, Bangladesh.
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Comfort is Key
Dear Morgan and Daisy Fund,
Many grateful thanks for the super advice about positioning for comfort during medical procedures. My daughter hates needles. Previously, the entire hospital would be made aware of her presence as the nurses put in her IV. The screaming and kicking was so traumatic for myself and the nurses, and for the other parents and children too. I was always embarrassed because my daughter is most of the time a very well behaved little girl, but needles turned her into a demon.
A friend of my brother in America sent the link to your article. I was so interested. My daughter likes her back to lean against my chest when we are watching television at home, so we tried some of the positions the next time we sat down together. I told her we were practicing to find out how she would like to sit when we see the doctor and she thought this was funny (she is three years old).
The next time we went to hospital, I took a copy of the article and showed it to our nurse. She was not sure this would be a good plan because the nurses are instructed to have the children laying down during procedures (“for safety”, she told me), but she agreed to let us try. What an amazing difference. My little one sat with her back and head against me. I held her legs between my own and secured her arm with mine to keep her limbs still, but she hardly put up a fight. She told the nurse she had practiced at home and that she was happy to be sitting this way. The nurses were so surprised. They all came to tell my daughter how special and grown up she was to not cry or scream – she was very proud, and she behaved beautifully.
I left my print of the article at the hospital so all the nurses could look at it. Maybe it will help another family. Thank you for this invaluable information.
Vidya Giri, India.
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Supporting the Family
Dear Daisy’s Eye Cancer Fund,
I read with interest Dr Wiezblit and Dr Gallie’s guidelines article in your Autumn issue of The Global Eye. Our family never considered the differences in medical care until a move across the country two years ago.
My niece has received treatment for bilateral retinoblastoma. Her parents were fortunate to live near the hospital which provided treatment on the East Coast, and thought we were happy with the care she received there. Communication was hard sometimes – it bothered my brother and sister-in-law that the doctors were slow to respond to their questions and seemed to dislike their need for so much explanation and information, but we all thought that was something worth putting up with because the hospital has a good reputation.
Then a job opportunity took my brother’s family to Oregon. They were a long way from a major hospital, but decided to find a hospital on the west coast rather than making a long trip across the country for check ups. The difference in style and approach to medical care was so striking. The doctors are much more open and accommodating, and I notice a difference in my sister-in-law’s voice when she gives us a report of the visit. She just sounds happier. Maybe that is because the active phase of treatment has passed, but I think it is more than that.
Do guidelines focus only on the “medical” aspect of care, or do they also provide guidance on how to communicate with a family and include them actively in discussion about their child’s care? My niece received excellent medical care – no one can fault that, but we do feel the experience could have been so much better if the emotional needs of her family had been considered more.
I guess much rests on the personality of individual doctors, but surely guidelines could help reduce the chance of a very negative experience.
Janet Miller, Seattle, WA. USA.
ED: The Guidelines currently under development in Canada include a chapter focused on psycho-social support for both children and parents/guardians.
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Creating A Clear Path
Dear Daisy’s Eye Cancer Fund,
I was treated for retinoblastoma many years ago, and now I am a parent, looking at the experience from a different angle. I have been concerned to hear such varying stories of how this cancer is treated from different families across America. I question all the time which way is the right one, whether we are making the right decisions for our son. I believe our son’s doctors are very competent, but I still worry. I think guidelines would be an excellent way of achieving equality of care that not only gives the child the best chance, but also could reduce these stresses that parents face in making decisions.
Somehow though, I can’t see that happening here. So many of the hospitals seem to “do their own thing”, each saying theirs is the best way. But this is not a commercial enterprise we are talking about, not an opportunity to out-do ones competitors. This is the life and sight of our children at stake. I sincerely hope we can see America do what our northern neighbors are so valiantly working towards.
Best wishes,
John James, St Louis, MO. USA.
Please send letters for inclusion in the next issue
by April 30 to: news(at)daisyseyecancerfund.org
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