Spring 2008
The Global Eye.
Welcome
Eye Contact
Jeff Healey Concert
Bowling for Africa
San Francisco Meeting
Research Matters
Mosaicism.
Eyes on the World
China
Rati’s Challenge
In the Spotlight
Abby
Linda
Focused Care Q&A
Pain
The Art of Child Life
Pain Management
Snap Shot
India
World Rb Citizen
Maria Pezzente
Kids Corner
Bugs.and Butterflies
Points of View
Have Your Say
Diary Dates
Upcoming Events
Raising Awareness
I received the awareness week email this morning from a friend. Thank you so much for taking the time to put it together. I had never heard of this condition, and this information is so valuable, in just the right amount to be understood without freaking people out. I sent it to everyone in my address book (over 100 people), and have asked all those people to do the same. I hope this will be an email I will receive back months or years from now – it took less than a minute to press the forward button, tap out a short message and send. If it helps to prevent the blindness or death of even one child, it will have been a success
Thank you so much for engaging me in such a simple awareness campaign as an email forward.
Best wishes,
Emma Tollerson
Granite City IL, USA.
Dear Daisy,
I was very interested to read the article about awareness campaign in Honduras in part of vaccinating babies for ordinary illness. Here in China there are many babies and we think how can this knowledge be given into the hands of every family. With this positive in Honduras, this can be a way to look at for many countries like our own, where information is little and families are many in the rural areas where they have no TV or such things. Thank you for telling us this important story.
Hui Jintao
Shenyang, China.
Clarifying Treatment Protocols
Dear Editor,
Thank you for sharing the stories of Katy and Brady, and the explanation of the Toronto Protocol. I had read here and there about this treatment, and because my son received cyclosporine with his chemotherapy, I assumed he was getting this protocol. I never questioned the doctors about it and was comforted that he was getting this wonderful therapy that has shown such success. But his cancer relapsed late last year, and we had to allow the doctors to remove his left eye.
His right eye has – thank God – been stable for 4 months, but if we have another relapse and have to do chemo again, I will ask how we can try to access the Toronto Protocol because I now know the first chemo was not the same as is used in Canada. I would urge other parents to not make assumptions, but to ask for clarification about whether their child’s treatment is a recognised protocol, and where it was developed. I feel uncomfortable now that I did not ask these questions, and wonder if the outcome could have been different for our son if I had.
I am glad to have this resource that teaches me so much.
With thanks,
Tonya Dominguez
Greenville, SC.
Child Life Impressions
Dear Daisy Fund,
I feel I must write and say thank you, because I am finding your art of child life section to be a mine of information.
Our 5yr old son had an impression made at the ocularist last month for a new eye, and it was a breeze, thanks to your wonderful article. I had been quite nervous because he usually hates people messing with his eye and the impression for his last eye was made during an EUA. He tends to react to anything medical that is new to him. I wanted to make the process as painless as possible, os I followed Morgan’s advice step-by-step.
About two weeks before the appointment, we had a chat about what would happen. We watched the video on youtube, which really interested him, and I showed him the pictures that came with your article. I gave him some playdough and asked him to think of words that described the dough in his hands, and that it would be the same kind of thing, but in his eye socket. We figured out a plan for the day, including that he wanted to sit on daddy’s knee, and that we would read a Thomas story together when the “squidgy stuff” was being put in his eye. It was a story with Gordon huffing and puffing, and I encouraged my son do all the blowing to help him breath deeply when he was afraid. We practiced in the car to keep him calm. When the ocularist was making the eye, my son asked lots of questions, and really engaged with the process. I was bowled over by how calm he was, because usually I struggle even to get him through the door.
Thanks so much for these really valuable articles. Certainly, this one enriched my son’s experience, and made the day much less stressful for all of us.
Ashley Rea
Muskogee, OK.
The Kenya Report
Dear Abby, Brenda and Morgan,
I finally was able to read the report to its completion. WOW!! I have no other words. The Report is simply Outstanding! Every single word of it tells me a fact about retinoblastoma, cancer, treatment, hospitals, persons in charge, need, and very hopeful and realistic solutions. You’ve covered each and every part of this disease as it would impact the child and or family in Kenya, down to the tiniest details. It was not only informative to me, but also extremely well written and of interest to a lay person. I also like that you have included pictures of the DECF team with the various doctors - It is nice to be able to put names with faces.
What a wonderful resource you have created. Congratulations on Job Well Done!
Teresa Beyer,
Millington, NJ.
Dear Team Rati's Challenge,
I just finished reading your Rati’s Challenge report. When I opened the document and saw it was 50 pages, I thought I would just skim through to look at the pictures and read the summary (I almost didn’t even open the file because I thought it was irrelevant really to me). But I read the preface, and I was hooked. I read the entire report from cover to cover. I found it so engaging and easy to read, the time just flew by. You paint a vibrant picture of Kenya - the country and people, and most importantly the hope for a better future for children with Rb there. The pictures tell such a story (especially the one of the children’s session at the hospital), and it was a very compelling read that I am glad I made time for.
With very best wishes for your work in Africa.
Mel Ellis
Newcastle, Australia.
Please send letters for inclusion in the next issue be August 31 to: news[at]daisyseyecancerfund.org
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