Spinal Tap, and Bone Marrow with Anesthesia

There has been a lot of changes going on over the past few days.

And yes, I have been avoiding updating. 

Anyways, we have more appointments going on. Currently we're trying to get a second opinion in San Francisco because they have an experimental treatment. Basically, for this experimental treatment they put chemo directly into the optic nerve. They have gotten good results from it for the past few years, and I'm sure some of you know that the pro basketball player, Derek Fisher, did it with his daughter when she was going through this.

However, they are having issues with our medicaid accepting the evaluation. You have to be enrolled with medicaid for them to cover it. San Francisco was enrolled at one point, but is no longer enrolled. However, they have offered to give us a free consult just to get an idea of what they can do. Which is amazing in and of itself. We don't know if they can actually do anything though. So we're waiting on that, but I'm hoping we can do something. This is our last option to try and save his right eye. Even if he has no vision in it, it would save him a whole lot of issues and troubles in the future.

Now for his appointments. He's going in for a Spinal Tap, and a Bone Marrow test next week to see whether the cancer has really spread through his entire body. We're going to have chemo regardless, but this will depict the amount of chemo we end up needing. If it turns out that it hasn't spread, then we will only need a couple rounds of chemo. However, if it has spread..then we've got a longer road ahead of us. This all is happening on Tuesday.

Then on Wednesday we're having another exam under anesthesia(yay anesthesia two days in a row!) to see how the eye is looking. How much it's grown, and to see if we can get it off the optic nerve. Apparently that's our next goal, to get the tumor off his optic nerve.

Oh, and we're also trying to apply for SSI to get some help, since there's a good chance my husband will have to quit his job. Hopefully we'll get approved now that it's bilateral. A good and a bad thing.

As for this momma. I'm super emotional, exhausted, and just flat out worn out - emotionally and physically. I've gotten promoted at work, so I'm trying to spend as much time focusing on that. But it's hard when all of this is going on. Next week I won't have the flexibility to go with my husband to Sacramento for all those appointments because of work. I wish I could, but I just can't request that kind of time off. 

I'm just hoping for a break of good luck. Anything. 

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.

Mommy guilt

As we near the day that my son is going to be put under general anesthesia to see if the cancer has spread, a lot of thoughts have been popping into my head. Most of them are probably completely false, and ridiculous. However, I cannot help the fact that I just feel so guilty.

Why did it have to happen to my baby?
Why does he have to lose his eye?
What did I do wrong in my life to deserve this, and for him to deserve it?

I just can't help but wonder what happened. What did I do wrong? I don't understand why this has to happen to him. Why does he have to lose an eye? My husband and I have been telling each other that we'd be more than happy to give up our functioning eyes if it meant allowing him the opportunity to live a normal life, with two normal eyes. I'm so scared of what's going to happen. Honestly, I'm afraid that I'm not going to want to hold him anymore when his eye gets removed. That I'm going to be scared. Scared of my own son. I know it's ridiculous, but I'm seriously concerned about it. Would that make me a bad mommy? If I was too scared to hold him?

These are the thoughts rolling through my head right now. Even worse is I'm so afraid the cancer has spread elsewhere, that he's got it somewhere else; like his brain. I can't even go there right now. I can't even consider what else is going on. I can't even think about the fact that there's a chance it's spread. That there's a chance that he'll have to endure more than he already has had to endure. I can't do it. I just can't.

But what did I do wrong? What did I do to deserve this? For him to deserve this? My poor baby is going to lose his eye, and I feel like it's all my fault. He's going to have to go through this torment, because of something I feel I did. I can't think of what. My husband has also been going through wondering what he may have done. If it's the experiences he had when he was a teenager. But we don't know. It's horrible to sit here wondering what you did wrong. Holding guilt, but not sure if it's really accurate or not. If it's truly your fault. I just don't know anymore.

I just wish I could have a normal baby.
I'm jealous of other babies, with normal red reflexes, with non-see-through eyes, and who won't lose their eyes.
Why me?
But worst of all, why him?

Why don't we know?

As more time passes from the day we found out(ok, yesterday), and I'm trying not to over do the whole posting thing. There's some things on my mind though that I just cannot shake. Like why don't our pediatricians educate us more? Sure, I understand that this is something weird, and not that common. We get warned about all sorts of uncommon things, why not this?

It really wouldn't take that much to warn people either. If it saves 350 babies eyes a year, well, that's 350 babies eyes a year! Think about. We never know what we're looking for. Looking back at some pictures today, we've realized that we have been able to see it since about September 6th. So, our son was only a month old. We had no idea what we were looking for though. Why couldn't we have been warned?

Now that I think about it as well, we never really saw the pediatrician checking our son's eyes. I've asked women on my birth board, and most of them responded that the pediatrician only checked their babies eyes sometimes. How is that OK? Why don't they check them every time? A lot of the women also commented that the well check visits usually got a check, but if they sick absolutely not. Really? So just because a baby is sick means you shouldn't check? I really don't understand the logic behind doctors today. It's like they are trying to find an excuse to be more and more lazy. Sure, you might get a lot of parents who would think their baby has this when they really don't, but you could also save babies eyes. You could avoid the possibility for chemo, and surgery on a 5 month old baby! Why is that not worth it enough?

I really don't understand it, and it's honestly motivated me to become an activist and/or a pediatrician! I mean we know about all sorts of rare things, so why is this one left out?

Now I'm stuck with all these thoughts of maybe if we knew what we were looking for, we would have been able to catch it when it was still small enough to save the eye. The more time goes through, the more I sit here and think I don't want him to lose his eye. I'm scared for him. I'm scared I'll be afraid of him without his eye. What if I can't look at him because it scares me?

You've got to realize this is coming from a very paranoid, anxiety-having momma. So, I get freaked out by the silliest things. Thinking about an empty socket, freaks me out. Or his prosthetic being obvious.. I feel horrible for it, but I still am afraid.

I mean, maybe if we would have known what to look for, this would have been much easier. Maybe we could have just done chemo and been done. I've heard of children losing their eyes to this around a year old, then two years later the cancerous cells come back, so they have to go under chemo. Really? Is this really going to be this much of a long road ahead? Is it really going to be this difficult.

As crazy as it sounds, lately, I've been looking at other babies in pictures and I'm jealous. I look at their eyes. They have the normal red eye, whereas mine has the white. Why does my baby have to have the white eye? Why couldn't one of theirs? Sure I don't honestly wish this upon anyone, but in actuality I do kind of wish it was anyone but me. What did I do that was so horrible to deserve this?

I'm sure some of the things that I'm saying are silly, but it's just how I'm feeling through this whole process. Work gave me Thursday, Wednesday, and Friday off. Just in case. Just to give me some time. Needless to say the cat is out of the bag, and everyone knows. They just want me to be able to have the days if I need them, if we get adverse results on Thursday. Adverse results.

I'm not prepared for this.

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

Night Before First Appointment

I sit here waiting until I have to go to work, hoping that everything will just vanish from my mind so I can focus while there. But there's been a couple interesting things that have popped into my head knowing what my son might have.

Why don't they educate people more on retinoblastoma and Coats' Disease?

I've done a lot of research, and seen that most people don't know about these things until they are farther along. It's left to the pediatrician to notice when there's something wrong, but how often do you really go to the pediatrician? Not many times, honestly. Sure during the first month of life you go very frequently, but after that it slowly dwindles. So what if the retinoblastoma ended up being an aggressive form of cancer?

I seriously think this is something that more parents need to know about rather than just stumbling upon it. As we have gone through pictures, we think that this might have started about 2-3 months ago, and I wonder if we had known then maybe it would be better. Sure we don't know exactly what's going on yet, we don't know if it's cancer or not, but maybe we could already be on the road to recovery by this point. Maybe we wouldn't be sitting here with a 5 month old wondering how far it's gotten, or how bad it is. We need to be educated!

I've kind of turned into a spokesperson for my birth board on a website for this. Telling the women with babies close to mine that they need to check their photos! You never know, and looking at it now; I completely see what's going on. But I didn't at the time. It was like I could subconsciously notice it was weird, but consciously I never really thought about it. It was just another "thing."

Even though we're going through all of this, he's still an extremely happy baby. Snuggling up with mommy, and making all sorts of noise. So far it doesn't seem that any of this has impacted his development, whatever it is. But it still makes me wonder;

What if we had known sooner? Would it have made a difference?

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.