Friday, January 18, 2013

Diagnosis is in - It's Cancer

After a long drive last night, and mommy being super sick; we made it to Sacramento around 3:30 in the morning. Honestly by this point we were thanking god my mother decided it was a good idea for us to rent a hotel room. I'm not too sure how we would have done it otherwise.

Finding the doctor's office was difficult. Have you ever been to UC Davis? It's freakin' huge! We waited in the waiting room for the longest time, and it just kind of made the nerves a little worse. I'm not really sure how to explain how I was feeling, but nervous could probably be a good way to start. They dilated his pupils again, and gosh this time it seemed a lot more freaky. Of course he didn't like it, but you do what you need to do.

My poor little bubs dilated pupils. When you see the yellow, you're not seeing the tumor, you're seeing the retina being pushed out by the tumor. 

Daddy was trying to hold him steady while he was dilating. My little buggy. 

We also had another eye ultrasound today. He absolutely hated that. It was a lot more in depth than the one we got on Wednesday in Reno. They took a lot more pictures, and looked more than the last doctor did. It was kind of obvious what it was. You could see the solid mass being shown on the screen.

After the ultrasound we sat in the waiting room for a minute, then got called back to another room. Where the doctor oh-so-lovingly told us that yes, it was a retinoblastoma. That it is malignant cancer, it's genetic, and that the best way to move forward is to remove the eye. Apparently, this could have been caused in my egg, Shaun's sperm, my ovary, his testicle, or in utero. There's so many different areas where it could have happened, and we'll never really know for sure. We got the undesired response of the fact we need to check out 2 year old, because she's at risk for the same cancer until she's 6. Great, was my thought. We get the fun of getting her put under anesthesia once every 3 months to see if she has this until she's 6. So we get the fun of that for the next 4 years. I think my husband said that would be 16 times.

On top of that, the doctor decided to make the not-thinkable-outcome a possibility. Because of the placement of the tumor, which might I add is over half the size of his eye, it might have gone to his brain. The tumor is sitting in the right position over his optic nerve, so we have to get an MRI done next week after his general anesthesia exam. My worst fears have started to become reality.

Not only right now do I have to be stuck with the thought of him losing his eye, which scares me. Now, I have to be also stuck with the thought of it could have traveled elsewhere? Not only is it bad enough that it is in his eye, it might have traveled. Apparently, as well, he can act completely normal if he has a tumor in his brain. Not even show any signs or anything about having a tumor, be developmentally on schedule, and so on. If it has traveled elsewhere...well, those options I'm really not prepared to think about. He will possibly need chemo whether it's traveled or not, to make sure that the cancerous cells don't try to travel.

You know what really gets me though?
He's got a tumor before he has any teeth.

Through all of this, I'm now stuck blaming myself. What if I could have changed it? What if I hadn't missed appointments? Maybe I could have been able to save the eye? What if we made it, and caught it when it was smaller?
All these what if's are going to kill me, I swear.
I guess you could say I'm experiencing a lot of mommy guilt right now, because somehow someway I feel as though it's my fault. That I could have done something to change it. That there would be some way that I could have changed this. Anything.

Still I'm going through the thought of, why my baby? 
Of all the babies in the planet, why did it have to be my baby? Why does my baby have to lose his eye and get a prosthetic? Why does my baby need to go through chemo possibly? Why me?

We have also decided it's probably a good idea to get a second opinion. Just in case. I mean, we are running the possibility of our son's eye removed. Why not be sure that we're getting the best opinions/options out there? Just in case there's any other way to handle this, we want to be sure. We don't want to find out about something, after already doing it. However, this is going to have to be a fun trip to San Francisco. Apparently, there's also an experimental treatment, but Quinn is too young to go through it. :( They literally inject chemo into the vein towards the eye. As if that doesn't sound freaky enough.

Anyways, this is just a little update on the current situation. I regretted writing this post all day, as I really did not want to face the reality of knowing this is how it really is. It's like admitting it here, kind of proves it really is real.

I think I'm going to become an advocate for telling people about this. Parents need to know what they are looking for!
Here's a facebook group that you might be interested in. More people need to be aware!
Retinoblastoma Awareness


  1. My seven year old daughter was 8 months old when we removed her eye due to RB. It was a awful, terrifying day...but we are blessed with a beautiful, sassy little girl today who is healthy and thriving. Hang in there mom, I know exactly how you feel!!!! Love, Stacey in Arizona

  2. first of all I would like to say your family is in my prayers and I'm so sorry this is all happening to your son. do not blame yourself for this at all there's nothing you can do to change how your baby grows(while pregnant ect) think about moms who are drug addicts who clearly don't care at all about their baby's and go to nobe of their pre natal appts. you are a mom who loves your babies and clearly takes amazing care of them. sadly this is happening to your family but people say god only gives u as much as u can handle and in my opinion is because u guys are doing what Quinn needs so your the best fit for what's going on. I hope the best for him and no matter what happens stay as positive as u can and don't blame your self or your husband