Pathology of Gracie's Eye and Gracie Meets Her Ocularist

Pictures of Gracie's conformer when it was removed for polishing. Sorry they're fuzzy it's hard to get a good close up shot with a phone.

We forgot to mention that at Gracie's last EUA we got the pathology back on her right eye. It showed what we already knew, that there were active tumors growing on the lateral side of the retina and confirmed what we suspected - the gazillion seeds in that eye were active and continuing to grow. Basically this 100% confirms that we made the right decision in enucleating that eye as there were so many seeds that it would have required ridiculous amounts of radiation to even attempt to bring them under control and even then the odds would have been very much stacked against us. Repeat chemo would have very low odds of efficacy. Basically the eye was unsalvageable.

James and I have said repeatedly that we would absolutely not subject Gracie to radiation. This is absolutely true, but I feel like we should clarify. The key word here is GRACIE. This experience has reinforced to us how absolutely every single case of retinoblastoma and every other cancer for that matter is completely different. No two cases are the same. In Gracie's case radiation was not a good option, but there are a hundred and one other scenarios when radiation would absolutely be the best treatment for a child with retinoblastoma. I won't begin to name them there are so many possibilities, most of which I really don't know much about. But I know other families who have chosen to do radiation, and if I were in their shoes I would have absolutely made the same decision. We're all just doing the best we can for our babies. That's one reason why it's so important to have experienced and educated doctors directing us and informing us of our choices as we make decisions. They've seen a multitude of different scenarios and they know what treatments will give our child in particular the best chances for beating this cancer and maintaining vision while doing it.

Back to the pathology, it also indicated that the three tumors close to her optic nerve were no longer active. Now, inactive tumors can reactivate, so we have no idea if they would have stayed that way. We don't know if the chemo stopped them or they stopped on their own. But we know when the eye was removed the tumors were no longer growing. It also showed that although Gracie definitely had RB (not a big shocker) there were no "high risk" features. Meaning that it hadn't grown into the optic nerve or the choroid or the anterior chamber, all modes for leaving the eye. As a result we can safely say that Gracie will not be required to undergo further chemo and as such she will have her port a cath removed at her next EUA on July 31! (Not by Dr. G. in case any of you were worried about this, we're coordinating schedules with another general surgeon) This is a big landmark for us as we have always had to keep it in "just in case". Well now we know that we really don't need it there any more, we're no longer worried about a "just in case" scenario. This is one more step toward putting this all behind us.

Gracie had her first accident due to monocular vision (that we know of) on Sunday. We were walking through the church parking lot and she ran full steam ahead into the side mirror of a car. She smashed the right side of her face pretty good. But she'd settled down by the time we got into the chapel. We were warned by another family that those side view mirrors in parking lots were dangerous for these monocular kids. So they are. It's right at Gracie's eye level too. We'll have to keep a better eye out for them in the future, as it's hard for her to do it. She's so good at running around without accident though, I'm not worried about it affecting her safety much at all. She's adapting so well and it doesn't hold her back in the slightest when she plays. Kids are so amazing.

On Monday Gracie had her consultation appointment with her ocularist. Ocularists aren't doctors, they're technicians and artists as they hand paint the eye. She is scheduled to have her eye fitted and made in two weeks time. We're excited about that. Gracie let him take out her conformer without too much of a fight, and then he polished it and put it back in again. He figures he'll be able to fit the prosthesis just fine in his office. A miracle worker! I wonder if he does house calls in the evening to put ointment in eyes? He's got a lot of skill and everyone speaks very highly of the work he does. He showed us some sample eyes, Gracie picked one up and was ready to take that one right then and there as her new eye. We assured her she'd get one soon and one that was made just for her. She doesn't seem too picky though. He himself has a prosthetic eye and it looks great - not just good for a prosthetic, but really great. I knew going into the appointment that he had a prosthetic and I couldn't tell which one it was until he told us. I hope Gracie's looks that good with that much movement. He lost his in a bb gun accident when he was twelve years old. Perhaps that's why he's so good with Gracie, he knows what it's like. Any way unless there is a hiccough in the process Gracie should have her new eye on July 21. It'll be yet another landmark in this process. We're excited for then.

Stephanie