World Retinoblastoma Awareness Week

This week is World Retinoblastoma Awareness Week. Early diagnosis is crucial to offer the best chances of saving a child's sight and life. In honor of our brave little fighter, we are re-posting our very first post so that you may understand how the majority of children are diagnosed ... by their parents noticing the signs first and fighting to have their child seen by a specialist.


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 family that had children and everyone said that it was normal because as we all know, it takes on average 6 months before babies can see as well as we do. Feeling like an overreacting first time mom I tried to let it go for the moment. It even seemed after a couple days that it got better and we were happy that it was improving.

Later, in a few photos that we took of Violet I noticed something strange. Out of a group of approximately 30 photos, the pupil of her eye had a reflection of light on it in about 3 of them. This would be something that anyone would dismiss as a weird flash error just like the red eye that happened in some of those photos, but it bothered me because it was the same eye that was concerning me before.

We started to watch this eye really closely and the next thing we saw caused us to search online immediately.  In certain light, when Violet would look in a specific direction her pupil seemed to disappear. It was black just like normal, and then suddenly it was skin color. Still, no one else saw it! It was very hard to detect because it would happen so fast. What we would find on the internet scared us and we called the doctor and made an appointment for her to be seen first thing Monday morning.

That night (Friday) I was changing Violet into her pajamas and I could see it in the light and angle she was in.  I called my mom in because I wanted someone else to see what we were seeing. At first, she didn't see it but when I told her to stand right where I was and to put her head right next to mine, she saw it. And, it scared her. Together, we did some eye tests and it seemed like Violet couldn't see out of her left eye. Right away we took Violet to the Fire Department to have the medic take a look at her.

My mom is a volunteer EMT in the town we live in so they know her well at the Fire Department. They took us in right away and the head medic examined her. He said that she looked perfectly healthy and happy and he saw no problems at all. At this point though, I knew he was wrong. My mom had him take another look in a different light and then he did notice that her vision wasn't well in that eye. He also was able to see what we were seeing with her pupil. He said that he didn't think it was anything too serious because he hadn't heard of anything like this in all the years he had been a medic. He said he was going to make a call to a doctor that would know more about it than he did to see what he thought. When he came back, he let us know that the worst case scenario would be 1 of 2 things . . . she could have a cataract or a tumor. He advised us to go to our appointment on Monday and to ask to be referred to a specialist at Seattle Children's Hospital.

We were both heartbroken and sick with worry over the weekend. Everyone we talked to said not to expect the worst and that there was no way it could be something that serious. Of course, this is something you never hear about. We did a lot of research online and our family did also. There are only a handful of doctors that specialize in this very rare cancer and we had just recently relocated from California right next to one of them located in Seattle, WA.

At our Doctor appointment Monday morning he confirmed that Violet was not seeing well out of her left eye and that something was wrong, but with his equipment he could not confirm or deny that it was Retinoblastoma. He said that he was going to refer me to Seattle Children's Hospital. I let him know that I had the name of a specialist that I wanted her to see and could he refer us directly to him. He said no, it didn't work that way. He said he could refer us to the ophthalmology department for an examination and then from their findings, they would send us to the appropriate specialist. I asked if they could get us in that same day and he said no because there was paperwork to be done in the referral process. I said that wasn't going to work because I wanted her to be seen immediately. He then told us that he could give us a slip saying "possible Retinoblastoma" and we could take that to the ER at Seattle Children's Hospital. He said since it was such a rare condition they would most likely send the specialist to see her. So, we took the slip and headed directly to the ER.

They checked her in and the nurses checked her eyes. They did not see what we were seeing but they did notice that her vision was not well in her left eye. They called the ophthalmology department and let us know that it would be a wait, but they were going to take a look at her when they got out of surgery. When we got in to see the specialist, he took a quick look and didn't think at first glance that she had Retinoblastoma but said that they would dilate her eyes and take another look. The assistant put the drops in and then we needed to wait for 30 minutes. It seemed like forever. When he came back and looked in her eye after the dilation it only took him a couple of minutes and then he said, "I don't have good news for you."  Everything  just left me at that moment. "I know", I said and then I lost it.

As my mind was spinning and my heart was on the floor I began to hear things from the specialist about the order of importance of treatment being first to save her life, then to save her eye and then to restore sight. Then he said she would need to have chemotherapy ... at least 6 sessions. First, they have to put her under anesthesia and perform a CT scan and more thorough examination to determine the size and number of tumors, to make sure the cancer is not in her other eye and that it has not spread beyond the eye. We will know more about the specifics of treatment she will undergo after that is done.

The specialist told us that it was good we caught it when we did. Statistically, the average age of diagnosis is 1-2 years of age. Another child was diagnosed earlier that day and it had gone unnoticed for over a year. Still, not knowing how long Violet has had this is eating me up inside.

This is the most difficult thing we have ever had to face but we know that we have to be strong for our sweet Violet.  Looking at her, you would never know that she isn't perfectly healthy. She is such a happy and spirited little baby girl. That is the scary deception of this cancer. The children affected do not look sick or have symptoms of illness. It makes us so determined to raise awareness because no child should have to go through this. 7 months old is far too young to have to fight for life.

We ask that you continue to pray for Violet. We know that miracles happen because we were blessed with our little girl after so many years of trying. We have faith that God will hear us and heal our baby.