Archive for September, 2008

Thanks to the wonderful people at the Eye Care Foundation in NYC, reprints of “Joey’s Special Eye”, a fantastic children’s coloring book, has been reprinted.

You can order it through the Eye Care Foundation or simply email me/leave a comment. I’d be happy to mail out a copy and ask that you make a small donation to the Eye Care Foundation.

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For the past few days, I’ve been trying to find information about how to get my daughter’s blood tested for genetics for Rb. Many parents have had the opportunity to have their child’s tumor tested, but our tumor was not viable 3 years ago to test (or at least we haven’t ever heard anything).

At the encouragement of many Rb parents, we have been trying to research getting my daughter’s blood tested. And, geez — you’d think I was trying to find the secret of life or something. It has been nearly impossible to try and find anyone who has done Rb testing, or to find anyone who knows anything about Rb testing. I’ve felt like the “it” person in that game where everyone knows the “secret code” but you, and you’re job is to find out. Very frustrating.

So, as a “seasoned cancer mom”, I thought this whole process would be a quick few phone calls. It hasn’t been. I’ve spent more than a few days, hours, and pads of paper scribbling down notes/names/numbers of people who never call me back.

But, as the title describes, sometimes it just takes 1 person to go the extra step and help you. That person is my friend, Marie. Thanks to Marie, she took the time to find out some info for me, and within minutes, I was on the phone with Children’s Hospital scheduling an appointment for my daughter.

Sometimes it takes 1 person with an answer, an additional question, and a caring heart to help. Hopefully RBNE is that “person” for you if you are struggling with a new retinoblastoma diagnosis.

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