Posts Tagged ‘eye cancer’

Thanks to all the people who turned out for our October 2010 Retinoblastoma New England get together. It was a beautiful day for apple picking, going through the corn maze, and a trip to the country store. It’s always such a treat to see old friends and new friends, and to see the kids have such a wonderful time together!


I always believe that encounters happen for a reason. I found myself a few dollars short of being able to go into the Corn Maze with the family, and was a little disappointed. I happened to strike up a conversation with a woman who was waiting for her own kids to finish the corn maze, and it turns out she is a photographer specializing in photographing infants and toddlers! We had a really extensive conversation about retinoblastoma, leukoria, and the chances of actually detecting it “by accident” via a photograph. Even this woman had said, “We were meant to meet today.”


I hope that she is one more angel in this fight for early detection of retinoblastoma, especially given what she does for a living.


As always, if you would like to join us for our next RbNE get together, please leave a comment here and one of our RbNE parents will get back to you!







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Just wanted to re-post another Welcome message for the people who are finding the Retinoblastoma New England site due to the awareness that the Today Show and other media have raised for Rb.

Feel free to surf around this site and learn more about retinoblastoma, our own personal story with this eye cancer, and for some words of encouragement.

Unlike the child who was diagnosed in Florida, my daughter Joli was diagnosed at an eye exam at age 2. By then, her tumor was at stage 5B, which meant it was at the base of her optic nerve. We can’t imagine what another few days or weeks would have done….

The leukoria, or white reflective glow, is definitely the first sign that most people see. Though, by the time there is a noticeable leukoria, it’s usually because the tumor is so large.

As the first grandchild, and our first child, Joli was photographed at every turn! And, now that we know about retinoblastoma and leukoria, I’ve combed through every single photo we had ever taken over the first 2 years of her life. What’s difficult is that the conditions almost have to be “just right” in order to see the leukoria. In some photos, there isn’t leukoria — and in the next photo, there it is, large and in charge.

So, welcome to the Retinoblastoma New England site! Please drop me a comment if you have any questions or need some support!




The following is a poster in Spanish that was produced by the Daisy Eye Cancer Fund (based in UK) with Joli as the poster child. Please visit their site, or print this photo to be placed in your office, lobby, etc. We’ve seen the power of knowledge, as highlighted recently in the press, and know that awareness is how we will save sight and lives!

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This is a beautiful coloring book designed for siblings of children with Rb. It’s also an awesome book written in very clear, and yet, age appropriate language. Special thanks to Grace Talusan (with help from Liza), Pam Bergsma (Joey Bergsma’s grandma), and Rob Harrell for contributing their talents for this important book.

"Joey's Special Eye" author, Grace Talusan and Joli

"Joey's Special Eye" author, Grace Talusan and Joli

I recently wrote to the Eye Care Foundation who has generously been funding the publishing of the coloring book. They are getting ready to order more! I’ve put in for an order to be shipped to me, too, so we can make them available in the New England area at our future get-togethers. I’m also hoping to bring them to Mass Eye and Ear when we go for our next appointment as well as bring more to Camp Sunshine next summer.

Leave a comment if you have a copy of the book and tell us what you think about it! (although, we already know how wonderful it is!! 🙂

As a special ‘shout out’ to Grace Talusan – she has been a wonderfully public writer about her experiences as the Aunt of an Rb kid. Grace has published stories in a book called “Silence Kills” as well as has been published in Tufts University Alumni Magazine with her moving story “Blinded.” For more information about Grace Talusan, or to read her stories about Rb, please visit her site. Thanks!

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Welcome to the Retinoblastoma New England site. This is simply a personal resource for parents, families and survivors of retinoblastoma – a rare eye cancer that is most often diagnosed in infants and children.

Here, you will find personal stories of families who have dealt with retinoblastoma. This is not to be used as a medical nor diagnostic site, rather it is a place where families and individuals can read about our personal stories with retinoblastoma in hopes of not feeling so alone.

Retinoblastoma is a rare pediatric eye cancer, and therefore, our network of families is based largely in an online community. There are a number of fantastic Retinoblastoma support groups in the United States, the most well known is Retinoblastoma Arizona (RBAZ) coordinated by Colleen Crowley. This group is fantastic, and therefore, we wanted to be able to provide a similar regional resource in the New England area.

This site, and this group, is entire volunteer run by parents of children with retinoblastoma.

Feel free to leave a comment or email liza@rbne.org for more information or support.

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