Friday, January 25, 2013

Bilateral Retinoblastoma

So I just got home from Sacramento. Honestly, I've been dreading the whole writing it out process of life lately. Largely due to the fact that it seems like it makes it more real. It makes it now public knowledge, and something anyone can read. Which, I don't really know why; seems to make it real.

Anyways, we had our appointment yesterday. Our long, long, so very long appointment. We showed up at 7:50 in the morning, needing to be there by 7:45 but it was OK. We waited for a long while(all while trying to keep a very angry 5 month old from wanting food right then), and were eventually pulled back by 9:40. They got the drops in his eyes( 9 drops per eye), got him changed, and started getting prepared. There were issues with the person before us so it was taking longer than normal. Which, again, I had a(at this point)very angry, hungry five month old.
A brief moment of happy!

Eventually they came to get him at 12pm, and we decided to go to lunch in the hospital cafe for some lunch. Made us realize how miserable he must be though, since we were starving..his little belly must have been aching.

Now I'm not sure if everyone remembers, but this appointment was an exam of both eyes under general anesthesia. Just to make sure that it wasn't impacting the other eye, the true size of the tumor, and all the other details.

While we were sitting in the cafe having lunch, I got a call from the doctor. I would say it was around 1 - 1:30 at this point. Something had changed and I had to hurry my butt up stairs to sign a new consent form. Well, apparently, the cancer did spread into the other eye. He had two small tumors in his left eye(the good eye), and they wanted to do emergency laser treatment. Apparently the right eye was getting worse as well. Last week they could see the detached retina, and this week the tumor had grown so much that they couldn't. So that told us, and the doctor how aggressive this cancer really is.

After another hour or so(and both my husband and I practically freaking out - many cigarettes), he was finally able to be done. His poor eyes were swollen, and he just looked awful. Unfortunately I couldn't hold him because I was scared of all the wires attached to him.

Daddy holding buggy to try and calm him down. He was screaming since he hadn't eaten since 2am, and it was now 2pm.

Then we finally were able to get to the MRI. Which meant he was going to have to go under, again. Not even being able to get back from the first time, he had to do it again. Apparently, they can't do MRI's on babies because they squirm too much. So we were off again. At this point it was closer to 3pm, so that's about 13 hours since our poor baby had eaten or not.

Just back from the MRI. Now in Pediatric recovery. 

When he finally came back, he was completely asleep. Had a mask attached to him, and was just..not good. His left eye, which they lasered, had gotten more swollen and red. They gave us some ointment, which has helped, so we would feel at ease about it. Kind of freaks you out when the doctor is even concerned by the amount of swelling. 

He finally woke up about 10 minutes after we got to the pediatric area(we were previously in just general OR recovery), and was able to drink 2oz of pedialyte. My goodness I never realized how quickly he could eat! Poor thing. 

Anyways, the doctor finally came into the room, and told us that there is no optic nerve involvement or brain tumors! Need I say YAY! But that the tumor is right on the nerve, so he will need chemo in order to ensure no transferring elsewhere. 

Now because it's turned into a bilateral retinoblastoma, the game has kind of changed. It means that he's more likely to cancers elsewhere, that it's a genetic mutation and not just the singular eye, and that my poor poor baby is going to have a long miserable road ahead of him. The eye will probably be removed in the next two weeks, and chemo will start then too. If the left eyes small tumors went away, then he won't need another laser treatment. But if they haven't, he will.

Oh, and we also will have the pleasure of having our 2 year old tested in 2 weeks as well. We see an oncologist next week, and an eye removal doctor eventually. 

This is all moving too fast.


  1. I'm sure u need all the prayers u can get and help with hospital bills god will find a way have faith and don't give up I'm praying for ur son

  2. Amanda I'm sooo sorry your precious little boy is going through this. You guys are definitely in my thoughts & prayers. I hope everything works out great for him & tests come back negative for your beautiful little girl.

    1. Thank you, we hope so as well. I don't know if I can handle two under chemo.

  3. Oh Amanda,
    I so was praying he wouldnt need chemo.God bless u guys.And i pray that this chemo will stop any other cancer from spreading anywhere else.I cried as i read everything u wrote.My heart is just braking for u all.Please know im here for u honey.And forgot u had this blog.So i will read everyday now.He has been through so much already.God bless his little heart.And yours!!! Your one amazing mama.Remember that.As a mom we want to protect our children.And its so hard when we cant do anything for them.Other than being there for them.That doesnt make u a bad mom honey.U are a wonderful loving mother.And he knows that.U are doing everything u can for him.Hang in there and know u have so many people caring about u and Quinn.I added Quinn and your family to our prayer chain at church.And at my mom's church too.I hope that was alright.I no for a fact that God can do amazing things with lots of prayer.I was told by a MRI and a CT scan that i had at least 6 lymph nodes affect by cancer.And when i had my surgery.They took 16 lymph nodes out.And not a one was affect with cancer.God can do anything.And i pray that good news will come your way too.Sending u so much love and many big loving hugs.And i will send a gift of money to try and help the best i can.I care so much.HUGS

  4. Good luck Amanda. This is a hard time in your life. I think it was harder on us after an EUA than anything else. I hope everything is still going well. I'm seeing that this is over a year old. I'm hoping I'll come across more for an update. :)

    1. Even today EUA's terrify me, so I can definitely agree with that sentiment. It's hard to go through. I always sit there and think that it's going to come back. And what would I do. It's too much "fun."