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Showing posts from July, 2011

The Glow

As much as I hate to look at this, I needed to create a short post to show you what to look out for in photos of your babies/children. This photo clearly shows the glow of light being reflected off of Violet's left pupil. This is a photo taken with flash and I want you to know that only photos taken with flash will show you this problem. In an age where many of the photos we take of our little ones are taken with our phones that do not have a traditional flash, this could easily go unnoticed. If you find anything like this in a photo of your child please contact a pediatric ophthalmologist and have them seen immediately. There are a few different things it could be, but they are all very serious.   I have just over 1600 photos that we have taken of Violet since she was born.  This glow is only in 9 of them. 

CT Scan and Exam for Staging

This is absolutely the most frustrating time of our lives. I can't even find the words to describe what we are feeling.  We are waiting for Violet's next appointment which is on Wednesday, August 3rd. At this appointment she will be put under general anesthesia, have a CT scan and more thorough eye exam to determine definitively how the doctors will treat her cancer depending on their findings (staging).  When we left the hospital last week they let us know someone from the scheduling department would be contacting us within 5 days to give us the date of this appointment. On the hospital paperwork it said that it could be 2-5 weeks before we would be seen. I called them the very next day. I was not about to wait 5 days to be contacted and I was not going to wait 5 weeks for our baby to receive treatment. They let me know that they are having to call other families and bump/rearrange other surgeries to get Violet in and that they had 3 people working on it.  They tried to reas

How we found out

On Monday, July 18th, our sweet baby girl Violet was diagnosed with Retinoblastoma, a very rare form of pediatric cancer that develops in the retina of the eye. The doctors did not catch this. We did. We don't know exactly when Violet got this cancer but she was seen regularly after birth for her weekly appointments, her 2 month, 3 month and then was seen twice when she was 4 months old because she had a bad cold. At all appointments her eyes were looked at and nothing out of the ordinary was seen. I have read that in most cases of Retinoblastoma general practitioners do not catch this condition in its early stages. Josh and I thought we saw that Violet's left eye wasn't aligning exactly with her right when she would look at us. It was so slight that you really had to look for it to even notice it. When we would ask others if they saw it the answer was always no. We tried moving objects in front of her and she tracked them well with both eyes. I asked a few friends and