About Me
Layout made byRetinoblastoma (RB) is a term which refers to the genetic condition causing tumors to grow on the Retina of the eye. Unilateral RB simply means that tumors have grown in only one eye. Unilateral might not be caused by genetic, but rather a spontaneous growth. Bilateral RB is when a tumor or tumors have grown in both eyes and usually indicates a genetic influence (either spontaneous mutation or inherited).I started this page about my son Devin so that more parents can be educated on Retinoblastma.Devin has Unilateral RB .. the tumor is in his left eye, only one large tumor.these are Devin's before and after pictures .. the top one he is about 3 months old .. then when diagnosed at 4 monthsThis is his story-Devin was diagnosed at 4 months old .. he was other wise a very happy healthy baby, so when his photo's started looking different at 3 1/2 months old we just figured it was either the camera or the lighting in our apartment. On a parenting board im on here online a woman I talk with is a nurse and she sent me an email after she saw the pictures I had posted about Devin and told me not to panic .. but to take Devin to his Dr and have her look at his eyes because she had seen a program on TV about Retinoblastoma just a short while ago and Devin's eye looked like the children's eye's on TV. I TRIED not to panic .. but you know how it is after doing research online .. you cant help but to panic .. I read soooo many horrible things about this cancer and how they can loose there vision .. or worse .. there lives .... I couldn't stop thinking about it .. I told my husband what my friend had told me .. he sorta pushed it aside, said it couldn't be, stop looking it up online and don't worry .. he is always great about calming me down .. but not about this ... finally another day goes by and I just couldn't take it .. I had my mom come with me to take Devin to the ER to have him looked at .. I was crying right when the Dr walked in I was so scared .. I knew deep down in my heart he had the RB. The Dr. at the Salem's Children Hospital did not diagnose Devin .. she only told us that she saw some growth but wasn't sure if it was cancer or not .. so she had us go strait over to Mass Eye and Ear ER and had them look at little Devin .. the Dr there saw something also but couldn't tell exactly .. he said something was definitely going on and that he was going to have to talk to one of the specialists .. so he sent us home .. here I am the whole time freaking out .. the next day we got a phone call from the specialist he told us that Devin needed to come in right away to go under anesthesia and have a thorough eye exam .. that is when we got the horrible news .. I thought my world was ending .. I didn't know why this was happening to us ( my grandmother had just passed away 2 weeks prior to all this ). After that we met with an oncologist to talk about Devin's treatment options. Devin's tumor was 9-mm in size, only 1 .. so he could have either had his eye removed and that would be it of the cancer, go through chemo, or have proton beam radiation. After all of Devin's doctors talked about the options they decided radiation would be his best treatment. Soooooo Devin had to have a central line put into his chest and went through 23 treatments of radiation. The line was put in so that when he had to go under anesthesia for his treatments all they had to do was hook his tube up. It was so hard for me to see the tube hanging out of his chest. I really felt like I had been hit by a truck. Driving into Boston every day for his treatments was just emotionally and physically draining.The good thing about the proton beam radiation is it had NO side effects .. only redness around his eye .. that was IT!!! After his treatments .. things started to go back to normal .. he had eye exams every month .. but everything was good
