I think it's important to have a forum to communicate with others who have dealt with similar issues, such as eye cancer and eye loss. I am 40 years old, and...
6
mukluk_jack
Feb 17, 2001 12:55 am
Hi! It's nice to hear from you and the fact that you are a success story! That's how I feel, too. I guess the name Retinoblastoma Kids just comes from the fact...
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babysittercats
Feb 17, 2001 12:57 am
i think i am the person that you were talking about who left a message here earlier. I am a almost 17 yr survivor of this disease. I would love to chat with...
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babysittercats
Feb 17, 2001 1:16 am
hi, i don't know what else you watn to know. I went through tons of radiation in both my eyes at mayo clinic in rodchester, NY. I was 5 weeks old when they ...
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mishcoffey
Feb 18, 2001 2:26 pm
my name is mish and i had retino at 2 years old in both eyes (no one in my family ever had it)- lost one eye and they managed to save the other with ...
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Janet_DeForest
Mar 12, 2001 4:56 am
I was diagnosed at about 2 1/2 with RB and my eye was removed. That was the only treatment I had. It was very advanced and I was not expected to live. But here...
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babysittercats
May 4, 2001 6:41 pm
i would love to chat with anybody that has/had RB or knew/knows someone with RB. Pleae email me at jlaine17@... or im me on yahoo, aol, or msn at...
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carla_sellner
May 28, 2001 3:44 am
WE NEED TO GET MORE PEOPLE TO JOIN THIS LIST<br>THIS HAS HELPED ME SO MUCH. i HAVE LEARNED ALOT THROUGH THESE SITES.<br>CARLA...
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mukluk_jack
May 28, 2001 5:35 pm
I got to thinking about the numbers of people who have had this disease, according to geneticists that's 1 in 10,000 who contract retinoblastoma. That's a lot...
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carla_sellner
May 28, 2001 7:01 pm
Hi carol how old are you?<br>these sites have been helpful to me and my understanding of RB.<br>there should be more people on this site!<br>I am the 7th...
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babysittercats
May 28, 2001 10:32 pm
hi i agree i felt so alone dealing with affects of rb. I have throughly enjoyed talking, sharing etc. with others who have gone through the same things that i...
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mukluk_jack
May 29, 2001 3:18 am
Hi Carla,<br>Welcome to the group. I am 40 years old, and had retinoblastoma in my right eye only at the age of 22 months. This was 1962, and my eye was ...
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KewlChic64
May 30, 2001 4:36 pm
Hi Jlaine~<br><br>I joined this group today. I encourage everyone to join the other online listserve that has MANY members with valuable information daily. The...
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kellynkidsnaz
May 30, 2001 6:07 pm
Hello,<br> I have just joined your club and want to introduce myself. I have a 6 yr old (soon to be 7) daughter, Emma, who was diagnosed with bi-lateral RB at...
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THOR10_60
May 31, 2001 12:46 am
My name is Elizabeth and I'm a 40 year old survivor of RB.<br>I lost my right eye to RB when I was about 5. I don't remember much about it, but do remember how...
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mukluk_jack
May 31, 2001 3:31 am
Elizabeth, thank you for posting. From the bottom of my heart, I understand your feelings about how the cancer we had resulted in such heartbreak for our ...
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mishcoffey
May 31, 2001 2:27 pm
hey there...my name is mish coffey and i had bilateral RB at the age of 2...through cryo - they saved one eye, and i lost one...i am now 32 and healthy as can...
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mishcoffey
May 31, 2001 2:29 pm
i posted a picture of me in the photos section of the club!!!!...
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jeawiz
Jun 2, 2001 3:04 pm
Hi Elizabeth,<br><br>I'm Jeanna, 33 and also a bilateral survivor. You shouldn't feel guilty about the 'mishap' it isn't your fault. I know what you mean when ...
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daisy82600
Jun 5, 2001 1:36 pm
hello all! My name is Lori and I am a 21 yr survivor of Unilateral retinoblastoma. I was diagnosed when I was 6 months old and treated at wills eye hospital in...
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mukluk_jack
Jun 6, 2001 3:35 am
Hi Lori! Congratulations on your graduation! I am also a unilateral rb survivor. I am so glad to be communicating with others who actually had the same thing...
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kellynkidsnaz
Jun 13, 2001 9:05 pm
Hello,<br><br> Just wanted to let everyone know that I have posted a picture. This is my daughter, Emma. I wrote earlier that she is a Bi-lat RB kid and...
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mukluk_jack
Jun 17, 2001 1:08 am
The photo of Emma is ADORABLE. She reminds me so much of my little girl, Katherine. Katherine is also blonde and wears glasses like Emma's. Thanks for...
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kellynkidsnaz
Jun 18, 2001 11:28 pm
thank-you for your message. I couldn't help but wonder about your comment that Katherine also wears glasses like Emma's. If i remember correctly, your children...
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mukluk_jack
Jun 19, 2001 4:02 am
Hi Kelly!<br><br>Two of my children (so far) have vision problems (not related to RB ... or could it be...somehow...?) Katherine-almost 4, and Samuel-6, both...
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babysittercats
Jul 1, 2001 4:36 am
i am blind in my left eye from my cancer i had a as baby. My friend who is usually very nice about it treats me the same etc. made a rude comment about ...
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jeawiz
Jul 1, 2001 12:27 pm
It's completely understandable how you feel about wanting to talk to those who have been there. I'm all ears. Please add me to your yahoo messenger and we'll ...
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THOR10_60
Jul 15, 2001 3:07 pm
My friends never knew I had a glass eye growing up. If they did know, they never said a word to me. I'm 40 years old now, and when I look back, I recall only a...
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THOR10_60
Jul 15, 2001 3:09 pm
Does anyone have the coral implant? I would love to know more about it. I'm thinking about having it done and would like some input from my RB friends....
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babysittercats
Jul 17, 2001 8:42 pm
my docs are pressuring me to get a fake eye, but they said that if i can endure the pain then there is no medical reason i need to. I really don't want to ...
