Ryan’s Retinoblastoma

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- We C Hope– 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.

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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.

At this point, Ryan has finished his chemo.  His eye doctor at Wills is thrilled with his progress- she says he’s regained a significant amount of sight- more than she ever anticipated.  We won’t know the long term effects of this cancer on his vision until he’s old enough to read the eye charts, but I do know he’s grabbing at objects and looking me in the eyes now, and that wasn’t happening before.  He does have some crossing, but they will address that with patching at some point.  I know we’re not at the end of the road with his treatments, but I do feel like the danger to his life has passed, especially since he recently had his first follow up MRI and the oncologist said it looked great.
My amazing friend Sherri posted a wonderful blog entry about Ryan and our family, including some info about retinoblastoma. She also made some gorgeous blog buttons for Ryan, and I want to thank her here for all her support, prayers, and just being a shoulder for me during all of this. I know Ryan has so many people pulling for him, and it leaves me speechless and honored to think about everyone who keeps him in their thoughts.

Thank you, Sherri, for making Ryan this button!

Pray for Ryan
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UPDATE: Ryan’s battle isn’t over. During the spring of 2012 he faced a setback that required more treatments, this time in the form of a radioactive plaque placed directly behind his eye. That came with two surgeries and a hospital stay. Then in the summer of 2013 he had to undergo three more months of chemo, although instead of systemic as he received 6 months of at his initial diagnosis, they went with the newer intra-arterial chemotherapy.  Then right before his 8th birthday they found that it’d come back in his bad eye and decided since it’s been multiple times and he had no vision to take it.  We’re currently in the process of getting him a prosthetic eye.  It’s really never ending…


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