Archive for September, 2009

From the day my child was diagnosed with Rb, we were very honest with her about what was happening. She was 2-years old, kind of on that cusp of still being a “baby” and being a “child who can understand”.

I’ve met parents who have decided not to tell their children what was happening. Their children have never heard the word “cancer” in their homes. We took the opposite approach. My child was active in her port-a-cath flushes, she knew the names of all the procedures and medications. She knew she had cancer.

Throughout the years, I have been very active speaking about retinoblastoma — lecturing in college biology and health care classes, speaking at fundraisers for Camp Sunshine, and working with families through this RbNE site. My daughter always accompanied me to these engagements. She usually sat next to me and colored. Or, she would hide behind my legs. Or, she would just run up and down the aisles while I spoke.

But, this one time was different. As I prepared my speech at Operation Swan Dive, my daughter turned to me and said, “Mom, I would like to do the speech this time.” My daughter had just turned 6-years old a few days prior. I said, “Sure!” and she grabbed the hotel pad of paper and a pen. My child began to write….

When she was finished, she asked if she could practice her speech. She practiced it ONE time, and then we left for the venue.

This was her very first speech. She wrote it all by herself. She delivered it by herself. She proved that Rb kids are amazing — but we already knew that, right!

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I’m happy to announce the next RbNE Fall Family Get Together!

It’ll be on Sunday, October 11th from 11am-3pm in Wellesley, MA at the Boston Sports Club – Wellesley. Thanks to Marissa Ferber — a Camp Sunshine volunteer extraordinaire — who made this all possible! We love you, Marissa!!

If you are a family who has been affected by retinoblastoma, please email me at Liza@rbne.org to come and meet other families.

You must be on the list in order to gain access to the Sports Club that day.

There will be arts and crafts, laser tag (modified for the visually impaired!), and various sports offered during the day.

Please email me for more information at Liza@rbne.org

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Please check out this amazing tribute to one of our Rb children — Leah — by her mother.


For those who may come across this as a newly diagnosed family, there are pictures of Leah at all stages of treatment. I think most of us can say that these pictures represent a very accurate sense of what you might go through/are going through.


Thanks to Leah’s mom for allowing us to post this on our site!

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