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Hello Mike, My name is Rachelle Anderson. My 2 year old son has Retinoblastoma, in which he was diagnosed at the age of 3 weeks. I found your web page and was touched by the stories of the others and your self. I think we all know dealing with this type of cancer can be stressful and challenging battle, no matter what the outcome is. My son Anthony is third generation biliaterial retinoblastoma. I myself had it as a child, along with my mother. My mother died shortly after I was born from a secondary cancer. Growing up I knew little about it, except that my left eye was removed and I had chemo along with radiation treatments. So when I found out that I was pregnant ( which was very unexpected) I knew there would be a chance of the baby getting it. He was checked at the age of 3 weeks of age and diagnosed with biliaterial retinoblastoma. We were sent from Florida to Philidelphia to the Wills Eye Hospital for treatment. He has had EUA's, Cyro, Chemothearpy, Thermothearpy and a radiation plauqe over the last 2 years. He has been in and out of reimmision several times. Luckily now we are sure he is back to a "safe" point. Ofcourse it can always strike back when you least expect it. Anthony has been lucky, for he hasn't lost an eye, though his tumors were serious enough to take alot of the vision in the left eye and possibly some in the right eye. He is very healthy otherwise. Basically he functions like a average 2 year old with some small set backs that hopefully he can over come as life goes on. Dr. Jerry and Carol Shields have been great and very supportive with him. I believe that can be very helpful and encouraging when dealing with a child's health. I am happy to know when he is old enough to understand what he has, that there are places he can turn to, to have a better understanding and support of a rare condition. I never knew anyone else with Retinoblastoma growing up. Infact I never met anyone with it until my son was diagnosed. So to me it is very important that he doesn't feel alone. It's also nice to know how other parents deal with it. I hope everything is going well with your son and the other families. It is ok to post!! |
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