Day 2 The Eye Is Complete

Here is the eye all painted, it still needs another layer of whatever the eye is made of and some buffing and polishing until it is complete. Prosthetic eyes are made of plastic polymer, they used to be made of glass until WWII. The glass they used to make them was supplied from Germany so obviously was no longer available at the time. Some doctors? (I don't remember if that's the profession or not) and dental technicians (I know I remember that one right) got together and developed this plastic polymer for making prosthetic eyes out of. It turns out this material is lighter, safer and more durable so obviously they never returned to making glass eyes after the war ended. The blood vessels of the eye were the most amazing part for me. See the red thread, the kind you can buy at any fabric store. This is what Gracie's vessels in her right eye are. He cut a small piece off and frayed it until it was very very thin and then put them onto the eye. Once those were on he used paint to finish up the sclera as no one's sclera is truly white.

Gracie and her ocularist once the eye is totally complete. Her prosthetic is her right eye, his is his left. I had to demonstrate that I was able to put it in myself before I was able to take it home. Plus I got a little lesson on prosthetic eye care. Basically I just leave it alone unless it comes out. If it comes out I clean it with baby shampoo as it leaves no residue and pop that puppy back in there. She has improved so much with letting me put her eye in. She didn't even really fight when I took my turn and put it in.

A close up of Gracie modeling her eye. Oh, and the eye was lighter yesterday. He said they always have to make the eye lighter to begin with and then they darken it as required. If the eye is too light it's easy to darken it, but if it's too dark you basically have to start again from scratch. I think it's a pretty good match in the end. The eye looks great, but I wish the movement was better. The ocularist says that will only improve over the years. She still has swelling around the eye that could last for another year, as well as she grows into the implant better (remember they put in an adult sized implant so that they wouldn't have to repeat the surgery as she grows older) the prosthesis will suction to the implant more and allow better movement.

Day 1 of Making An Eye

Gracie had her first of two days meeting with the ocularist today in order to make her new eye. She was such a trooper! I was amazed at how well she did, and she was pretty proud of herself too. We took a few pictures to kind of chronicle the process.

Obviously her conformer had to be removed before he could start making a mold of her eye socket. Here is a picture of her without it in. It might not be as noticeable in the picture as in real life but her eye lids look much more sunken without the conformer in. That thing does an excellent job of giving the eye lids some shape.

I learned that there are a couple of different ways to make a mold of the eye socket. One commonly used is to inject a putty type stuff into the socket and let it harden. It's kind of like getting a mold of your teeth done. This is what they have video of on YouTube. Our ocularist feels that that method is quite traumatic on children, often they do this while they're still under anesthesia. He prefers to use a different method. It is much more pain staking as he makes a mold with wax by hand. He had to put it in and out of Gracie's eye at least 20 times to make sure he had it just right. It's his belief that you actually get a better fit with a child this way. Once he had the exterior mold done then he put some gel inside it and took a mold of the interior of the socket. The gel sat in her eye for about two minutes. When set it is the consistency of a boiled egg white. This was the part she liked the least as it feels pretty cold in the socket. But despite that she did her job well, she tolerated him playing with her eye for over two hours and the cold gel in her eye for two minutes. Way to go Gracie!!

Here's Gracie modeling the mold in her eye. She kept calling it her bubble gum eye as it's just the right colour so the sheet of wax really did look like a sheet of bubble gum. The hardest part of making an eye is getting a proper fit. He spent two hours making a mold and only about 30 minutes painting the iris (if that).

I thought that he painted the iris onto the eye itself. But no, the iris is a separate disc that he painted today and then inserts into the eye as it's being cast. So here is Gracie's iris being painted. Oh, in case any of you were wondering you are required to have a bachelor's degree preferably in the sciences in order to be accepted to apprentice to become an ocularist. Then the apprenticeship is 5 years of on the job training. And yes, I did ask permission before taking all these pictures of him working. He didn't mind a bit.

A close up of Gracie's iris. The iris is painted on a little round disk. The pupil is separate from that disk. It's a little suction cup looking thing with a black pupil in the center. The two (iris and pupil) are obviously joined together while the eye is being made, and the clear little handle which you see on the front of the eye is removed sometime during the process too. The black handle in the back is not attached to the iris, it's just there so he can handle it better.

The iris/pupil and Gracie. In the pictures it appears that the iris is a little too light to me. I didn't notice that until I got home. We'll have to see how it all turns out tomorrow. Tomorrow is when the sclera (white of the eye) gets painted and the final fitting gets done. AND we get to take home a new eye. Today was the hardest day by far for the process, or so we've been told, so tomorrow should be a piece of cake!

Gracie's Hair

We get a lot of emails asking if Gracie's hair is coming back curly again. The answer is a resounding YES!! We also get a lot of comments that her hair appears darker than before. I'll agree that it looks darker than before, but I'm not convinced that it actually is. The roots are always darker than the tips and it hasn't grown out enough to know if the sun will bleach out her hair enough so that it's the same colour as before. This is kind of what I think, but of course only time will tell.

Stephanie

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

Too Cute

Gracie LOVES to swim, but for a month after her enucleation she wasn't allowed to swim. And then she was only able to swim with goggles on to a. protect her left eye and b. help prevent her from losing the conformer and soon her prosthetic in the water (or at least catch it if it does come out). We got her some oversized goggles hoping that they'd be more comfortable around the prosthetic. And hey, they're pink. What's not to love, especially when you're 3. We took her swimming the same day she got the goggles and she had a blast. It's good to be able to take the whole family swimming again. We couldn't get away from the cheesy grin in the photo shoot!