Wednesday, January 16, 2013

Coats Disease or Cancer?

The first question that pops into my head is; Where do I begin?

The point of this blog is a hope to educate others in understanding what they need to pay attention to when it comes to their babies, because the feeling that the issues with your children is because of your lack of attention. Well, needless to say, it feels horrendous. I guess I'll start from the beginning though, then move from there. Don't worry, my baby isn't passed away, but this is a long journey that is just about to start.

My name is Amanda, a 20 year old mother of two. I have a daughter, Charlotte, who is two years old and a son, Quinn, who is 5 months old. I'm married to the man I've devoted my life to for the past 4 years, and we've been happy ever since. I'm a manager in training at my local Five Guys in Carson City, and am a full time college student. Life, is definitely not a walk in the park.

All of this started with last Friday, when we found out our son had an abnormal eye reflex. Or more so, what they so-blandly told us an eye anomaly. To which we sat there with blank expressions thinking, what is that? Apparently, the pediatrician had asked my husband if we ever saw anything weird in our son's pictures(looking back I realize that we had, but at the time we never thought anything of it). He responded with no, not really understanding the point. She didn't really pester any further, but sent us off to a specialist.

When we went to pick up the kids from the babysitter that night, they had told us that they had actually experienced something with him a few nights previous. It was dark one night, and the TV had caused a weird yellow reflection in his eye. Only one of them though. This scared the crap out of them, but they thought we already knew about it so they didn't see anything. Well, I had never noticed, but that night I finally saw it. Prior to seeing it, I had done a little research to see what the heck this could be. I mean, Dr. Google isn't always wrong, right? There were a few things that weren't really blatant as to what was going on, but the most common things that kept coming up was: Coats Disease, and Retinoblastoma. To which I'm sitting here thinking, wait a minute, my baby might have cancer of the eye?!
What did I do wrong? Did I cause this? I really had no idea, and even though the doctors tell me that it's nothing I did, it's hard to stop, but back to the stream of things.

In case you don't know what these things are, I'm providing a short description of them just for a brief idea.

Coats Disease - When the blood vessels in the eye don't develop the way that they are supposed to, which causes a leak of fluid. This leak of fluid builds up over time, and ends up causing a yellow or "cats eye" response to certain lights.

Retinoblastoma - A malignant tumor inside of the eye causing a blockage of the retina getting the light necessary to produce vision.

So these were my options for what was happening to my sons eyes. Neither of which were anything that I really wanted to accept could be a possibility. Sure, I understood that there was a chance, but most times Dr. Google makes it seem like you're dying when in all actuality you're just having a mild cold.

Well, seeing his eye caused me to completely break down, and fall apart. Like, I can't even hold myself up I'm crying so badly fall apart. But I've continued to move along. We scheduled our appointment for Thursday the 16th, at 9am. After some decent guilt tripping, freaking out, and crying over the phone. Well, maybe not that much, but a little bit. Enough to make them realize the severity of what needs to happen.

Of course, my worst desire came true. The doctor confirmed that it could be one of the two that I had found in my Dr. Google searches. It's either Coats, or Cancer. With which my first thoughts have unfortunately caused me to feel like I'm a horrible person. Why my baby? Why not anyone else's?

However, do I really wish this upon someone else? No. I just wish I wasn't the one having to go through this right now. The doctor did some mild tests. Dilation of pupils, which allowed me the not-so-pleasant ability of seeing my son's veins floating around in the fluid of his eye. Creepy, most definitely. At this point the doctor was leaning more towards Coats due to the lack of being able to see any seeds in his eye. So that was becoming I guess moderately calming. Although, which would you really choose? Neither are good.

Then we had an eye ultrasound done. There was some calcium in his eye, so we are back to the "it can go either way" point in this. So, basically, the tests that my son was put through were essentially pointless; we ended up exactly where we started off.

Oh, and we found out his retina is completely detached. No connection there whatsoever. If he can see out of it, it's just light/dark. Detached.

Back to current. 
We now have an appointment for Friday at 8am in Sacramento with a retinal specialist, so we're looking at a couple hours of driving for this. It's a Pre-Op appointment, and no he's not getting surgery. They are going to put him under general anesthesia next week, to get a more detailed exam done, then a follow up on Friday. So that's going to be two days my husband will have to not go to work, and stay in Sacramento with our son. I wish that I could be there, but working this kind of job doesn't really permit the ability to just randomly take off.

On top of all this, I take my management tests at the end of next week, and I'm going to be sitting there thinking about my poor baby all day.

Just so you know, as far as we know;

Worst case scenario?
- He'll lose his eye(As long as it hasn't gone to other parts of his body, but that's an even worse not-yet-thinkable situation)

Best case scenario?
- He won't be able to see normally out of that eye ever again.

In other words, no it's not curable, but it is treatable.

Here's some pictures so it's understandable what we're looking at.
In this one, you can see that his left eye is red, but his right eye is white. This is a sign of both issues, and shows that there's problems. This is the kind of things we started realizing after all of this came around, but in previous pictures.

In this one, you can actually see the yellow in the right eye. It's very clear, and if I had a better picture I assure you would see more.

1 comment:

  1. Hey Amanda, I came across your post while I was searching for coats disease info online. My fiance and I are going through exactly the same thing with our 11 month old son. Just wondering what ended up happening? Asher is due for an mri on Friday to hopefully rule out the retinoblastoma. It'd be nice to have someone to talk to about this rare issue. If you can, keep in touch!