Ryan is one of my twin sons, born June 14th, 2009. When Ryan was 4 months old, I started noticing that he wasn’t focusing like his twin brother Dylan was- not on faces or objects. He would only stare off directly at light sources. He wouldn’t track you with his eyes- or follow toys or anything that passed in front of him.
Then I started noticing that his eyes appeared white in pictures. Not the whole thing, just the pupils- similar to the way you see red eyes in flash photos- only his were white. Since I often take pictures of the twins together, I’d observed that Dylan’s pupils would come out red and Ryan’s white. The difference was concerning. I looked it up online and read about several possibilities.
I came across this site- Daisy’s Eye Cancer Fund- and specifically the page I linked- that shows several kids with white eye and what their diagnosis turned out to be. Additionally, those pages discuss how certain harmless conditions can be captured as white eye as well, and details how to take photos to determine if there may be an issue that you need to have an ophthalmologist investigate further.
Using the instructions from that site, I then spent several hours over the next couple of days taking picture of the twins. I took them from all angles, and in all sorts of lighting. I took HUNDREDS of pictures, just hoping to see a normal reflex in Ryan’s eyes… only to get white spots every time.
As you can see, his eyes always photographed white. I made an appointment with the pediatrician which was on a Tuesday, and from there it was a whirlwind of doctor’s appointments and testing. The pediatrician we saw referred us to an optometrist, and we were to be seen first thing the very next morning, a Wednesday. As soon as she saw us, she referred us to a retina specialist for that same afternoon. He was the one who made the diagnosis of retinoblastoma after dilating his eyes and looking.
From there, we had to make the decision where to be seen for treatment. There are only a handful of places that are experienced, and we were given three choices. I asked the specialist where he’d take his children if they were diagnosed with Retinoblastoma, and he said hands down, Wills Eye in Philadelphia.
He set us up with an appointment at Wills for the following Monday, less than a week after we’d first been to the pediatrician for it. We spent the next two days getting all the medical stuff taken care of that we needed prior to being seen in Philly, which included blood work, a physical, ultrasounds of the eyeballs, and a MRI. Since Dylan and Ryan are twins, Dylan was subjected to all of the same tests to make sure he didn’t also have cancer.
During all of this, Aaron was deployed on a ship! The Naval Hospital called the Red Cross and had him sent home. Meanwhile, my Mom made the 12 hour drive to come stay with our daughters while we took the babies up to Philadelphia. We had no idea how long we’d be there, what his treatment would entail, etc.
When we saw the ophthalmologist at Wills, she diagnosed Ryan specifically with bilateral retinoblastoma- his left eye is a Class C and the right is a Class D. The MRI ruled out trilateral- where the cancer metastasizes to the brain. We are very thankful for that- because then the survival rate is very low.
However, his right eye is only a step above the classification where they’d require enucleation- where they would remove the entire eyeball and replace it with a prosthesis. While this completely removes all traces of the cancer, it also obviously removes any chances of regaining vision in that eye. His doctors are hopeful that he’ll be able to regain significant vision in his left eye, and possibly some in his right.
His treatment consisted of IV chemotherapy for two consecutive days each month for six months. He received three different chemo drugs- Carboplatin, Vincristine, & Etoposide- plus anti-nausea meds. For two weeks after each round of chemo, I got to give him injections of Filgrastim each day. This is a blood product- white blood cells- to help recover the ones he looses during the chemo process, to get him healthy and ready for the next round. Over time it wasn’t enough and when his counts got low enough he needed blood transfusions. He had weekly blood draws to monitor this.
After a couple rounds of the chemo, we brought him back to Wills Eye Institute where they sedated him to examine and monitor the progress of the tumors as they shrunk down, and do other forms of treatment to get rid of them, such as thermotherapy. It’s basically where they use a laser to heat the tumor and kill off the remaining cells and scarring left by the tumors. Currently the cancer is not in his brain, but to be safe, he gets MRIs every six months until he’s five. I think after that it’s yearly. Also, from what I understand, there will be many, many more treatments at Wills even after all the chemo is done to work on improving what vision they manage to save.
Thank you, Sherri, for making Ryan this button!
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