Been a while - Lots of Change

I'm sorry I haven't been able to update in a long time, a really long time.
We've been so busy.

This momma decided she wanted to try and get back into school. I'm so close to getting my nursing pre requisites done, that I just wanted to go for it in hopes of good grades. Though, this has left me a little absentminded about things that have gone on, so let me update in the shortest way I can.

Quinn's broviac got removed - after a fun time at the cancer center in our area, and them in turn popping his broviac(yes, straight out popping it. This thing that we were always told that IF this were to happen it would stereotypically-b-rated-horror-movie bleed out? Yeah. That.). This lead to an emergency 3 hour drive to Sacramento with the only thing keeping him from bleeding out was a hemostat attached to his chest. Seriously. A hemostat.

Oh so lovely piece of equipment. Roughly the entire size of my son's chest.

Then of course, we get there and these poor nurses are traumatized. The stupid hemostat was so large that it kept pulling the broviac underneath his skin. Oh lord. That's the most terrifying thing to see ever, a weird tube like instrument moving under his skin. It was like those horror movies where the worms are under skin. Yuck. 

This lead to a surgeon coming over that night, and suturing the tube closed since there was a rip in it. Literally. It was about 2 cm long. Terrifying. Of course, since the broviac was no longer acessable, we ended up having a 3 hour attempt to get an IV in, which lead to one in his head. But things went smoothly after that.

NO MORE CHEMO! - Did I say that with enough emphasis? No? Let me try again, NO MORE CHEMO!!!!!! Yes, you read that right. After the long grueling months we are done with chemo. It's a blessing in disguise. I never realized how much I hated chemo. Hate hate hate hate HATE. It was terrible, the puking, the crying, the sleepless nights - they are(pretty much) over at this point.

Quinn's hair is back - Can you believe it? He's got hair now! Like, REAL hair! Honestly, when we were going through everything I never really realized quite how much he lost. That he LITERALLY was bald. Until he grew it back, and my goodness. He's got HAIR!

Yes, mommy is cloth diapering again.

Other than that, I'm really not sure what's changed. He's different, of course. He started walking, cut a few more teeth, but he's just..different. He's not like normal baby's his age. He's just..different. I know, I've said that like 15 times now.

Hopefully, this next break won't be as long.

Until then.

Fear, and then some

It's been a while. It keeps being a while.
I'm so hectic all the time, and kind of melted into my own bubble.

Anyways, things have been..interesting? His numbers dropped significantly for a while. We started out this session of chemo with a 960. Which is the lowest we've done since the beginning of all of this. This scares me a bit. Especially since, for some reason, this time after getting his eyes lasered he was not interested in waking up. He didn't want to eat, drink - nothing. He wanted to sleep. Honestly, it kind of felt like he was just "giving up."

His appetite still isn't there.
He's sleeping all the time.
He's agitated when he's not asleep.

I think in total today, he's had about 15-ish ounces of liquid(formula and pedialyte). No interest in dinner, or lunch. Every bite I'd give him, he'd spit out. It concerns me. This is not normal. The last 3 times he's not done this. I don't understand. I'm concerned. But the doctors aren't. It kind of makes me want to push it aside because they don't show anything.

Here's some pictures from today/yesterday.
He looks better than he is, aside from being pale.

He was infatuated with chewing on his IV. Which is not fun. He had a bath too. :)

Not wanting to get up from anesthesia. 

His little car mommy and daddy bought him. :)

Big Sister pushing him in his adorable car. 

Waiting at the doctors office.

So the good thing about this time around, is that his tumor is no longer measurable. It's not able to be measured by ultrasound anymore! That's a GREAT thing.
Yet.
Why don't I feel better?

I don't understand why I'm not feeling better. Jumping for joy. I'm upset about life. I don't like going through this, and will never understand it. We're also getting his prosthesis next week. That's a great thing. But I'm scared.
All this moving forward scares me.
How am I going to be able to function once all this is done?
6 months of our lives will be owned by this.

I'm not sure what to say, really. I feel as though I'm not acting the way I'm "supposed" to.

He's not eating.
He's not really drinking.
What will I do once his IV is no longer there?

I'm scared.
When will this fear go away?

Update

I feel like I don't update as much as I used to.
But I have a rush of emotions right now, and feel the need to get them out.

Quinn is doing fine, but I sometimes sit here and just wonder why everything is the way that it is. We just moved in with my mom again because of the fact that our neighbor believed it OK to pound on the walls when my toddler would jump up and down. Although, it does lessen the financial stress, it's still an unfortunate thing. On another note, Quinn did have bad numbers last week, but we've gotten stable now. So it's just a waiting game until the next chemo. With how low he got, I'm scared to see how bad it gets next time around.

I've been a ball of emotion. I'm not sure what's going on with me. We've been talking to an ocularist about getting his prosthesis, but I'm kind of scared to do it. He will have to be put under anesthesia in order to get it. I am so sick of him having to be put under anesthesia. I hope to god he has no other issues in his life because this is just insane. I think he's gone under more times than I have in my 21 years of life. There's just so much I wish I could take away.

My husband and I were talking the other day about the day his broviac catheter is out of his chest. We agreed to let him be completely naked as long as he wants to. I mean, he will be a year old, so it's only fair. Oh, must I mention this, he will be turning one year old on the start day of his last chemo. Yes, we will be in the hospital for my baby's birthday. No, I am not happy about this. However, we asked the hospital if they would do anything. Apparently, if we let them know in July, they will set up to give him a cake and a special dinner. I'm glad they accommodate this for their patients. It's  not their choice to be in the hospital on their birthday, so it's comforting the hospital makes them feel comfortable. I'd be really sad if we weren't able to at least give him something. Sure, he'll only be 1, but still. You're only 1 once.

As time goes by, I sit here and wonder things. How am I able to handle this? Like, sometimes, I'm astounded by myself. By how well I do. I don't mean to gloat, but I really don't fall apart. His numbers were low, I handled it. He needs a shot, I handle it. He needs a dressing change, I handle it(unless it's one of the days he sees nurses - I love those days!). I'm just surprised that I don't fall apart more frequently.

On another note. Quinn will be participating in the relay for life. Two of them. He has event pages, so if you would like to donate to his cause, here are the links.
Quinn's Relay Page - Carson City
Quinn's Relay Page - Douglas County

I'm actually excited to participate this year. I've been participating for quite a few years, but this year will mean a whole lot more. I just hope things get easier after this. I just want life to be easier. I'm sure a lot of people say that, but I think I deserve easy after this. Just one break. Just one.

Here's some pictures of Quinn:

Trying to crawl.

Standing up with his Papa

Smiley baby

My free SuckItCancer T-Shirt

Waking up in the morning, still happy.

Chemo 3 out of 6!

I feel like the biggest jerk in the world right now.

But let's start with the vast amount of updates I need to do.

Quinn has been doing amazing this time around. I mean absolutely phenomenal. He's not been throwing up, or having weight problems. Everything was leveling out. It was like I had my baby back again. Like he was finally my normal baby. Do you know how great that feels?
Ever since all of this started I've felt like it wasn't my baby anymore. Like it was someone else's baby. Like he was replaced. He was more agitated, fussy, upset, bothered, and easily unhappy. It was not pleasant. So when he finally started acting like himself - I was enthralled. I've been enthralled.

Sitting in the Dr's office, waiting to get out of there! 

Over the past month, he's started trying to crawl, he sits up almost completely steadily, he has gotten two teeth, and he does not stop babbling! Can you believe that? All of this in just one month! Even chemo cannot keep my baby down. He's also started growing his hair back in the area where he was going bald. Although his hair is extremely thin still.

Quinn is also in a contest for the local newspaper, which I've been wanting votes from everyone. He's gone from 51st to 7th in the process of a couple weeks or so. I'm hoping he can win! But we'll see. The winner gets a free photoshoot, and a posting in the newspaper. Although, we've found out that the Northern Nevada Children's Cancer Foundation might be able to get us into the news as well. Which would be AWESOME! :)
Anyways, here's the link. If you want to vote, vote. If not, well, poo on you. Haha.
Vote for Quinn!

Now to current.
He got his eye exam today. His left tumors are amazing. One of them, as I think I've mentioned before, seems to be completely gone. The other one shrunk by 30% last time, and now has shrunk another 20%. So that's definitely doing good things! It's working! His eye is DEFINITELY going to be saved. He will not have to have another eye removed.

Before his anesthesia. Waiting to be taken back. HUNGRY! :)

Waking up from anesthesia

He also is about to start his third chemotherapy treatment, hopefully within the next couple hours. Not fun, but definitely needed. As long as he remains the way he's been, I'll be happy. I'd hate to see him revert to how it was.

For the reason I feel like I'm a jerk. This time around we are being paired with another child who is undergoing chemotherapy for retinoblastoma. The difference? This child didn't have to lose an eye, and is about a year older. So, this momma, right here, feels extremely bitter. Extremely. It's like a punch in the face that there's people out there who go through this and don't lose their eyes. Which just drags me back to - why did MY baby have to lose his eye? Why did HE have to get this? It's so ridiculous. He's so amazing. Why did such an awesome individual have to have something so horrible? Ugh..

I'm a bad person.
I wish my feelings were considered.
I feel selfish.

Light at the end of the tunnel?

Quinn got his eye exam yesterday.
We were(for once) actually the first patient of the day, so we had to get there at 5:30 in the morning. I think we actually showed up at 5:45 due to my waking up at 5:19. Can you imagine the heart attack I had? Well, he went back a little before 7:30. They did his eye exam, and lasered the tumor in his eyes.

For the update. The doctor told us good news. For once. The smaller tumor in his left eye has seemed to completely vanish. The larger one has gone down by 30%, and there are no new tumors. The only thing bad that's happening(which may not even be a bad thing) is one of the suture's in his right eye that holds down the implant is sticking out.

Copyright www.clinicalondon.co.uk - Just an idea of what I'm talking about. Orbital Implant after enucleation.

By now, she was hoping that it would all be buried. However, the rest of it looks fine. All that this means is that there's a chance he could get an infection, or need more surgeries to correct it. Also, this will make him be a bit delayed with getting a prosthetic. Like I said though; that's fine given what we've been going through.

Now back onto the topic of chemo and everything. Well, due to how quickly everything is shrinking there's a chance we won't need all 6 months of chemo! Can you believe that?! We might only need a few! I would be so happy. I mean, we've been going through this for a month or so now, having to deal with the up's and down's, and wondering what was going to happen next. Hoping that we could just rewind, go back, and redo everything. But this is giving us hope!

Later on in the day after chemo. Poor swollen baby.

Today, after his second set of chemo.

Before surgery, early in the morning with a tired mommy.

As for me, I'm exhausted. I am always exhausted. Quinn is honestly like a newborn baby lately with how he sleeps. IE he really doesn't. I'm glad he's doing well, but sometimes this momma just wants a break away from life. There's times where I just wish he was a normal baby, with no issues, no chemo, and nothing. I would love for it to be easy. I'm gradually accepting that fact that it won't be that way for a little bit. Accepting that there's a chance he could get cancers elsewhere but I can't keep thinking like that. I can't keep going that direction. I need to live right now, not in the future.

So I'm doing the best I can.

But hoping this is the end.

Not holding my breath though.

Long Needed Update

Since the temporary death of my computer it's been difficult to get the time to put this down. Not too mention it's hard to type from a cell phone.
And lets be honest
I avoid it.

It's like writing here makes me feel like its more real. My baby, my pretty baby boy, has cancer. And it's not easy. I still sit here and can't even comprehend whAt position I'm in. It's so difficult.

Since I posted last, I have broken down. Everyone told me it was inevitable and bound to happen. And it did. I hated it. Since it happened it couldn't even stop. I still can't stop being a little emotional. I do my best, but sometimes I still sit here and wonder why my baby. Why me? I don't get it. I really wish I could be in anyone else's shoes. But then I don't wish this on anyone. No one deserves to go through this, and this has brought a whole new line of sympathy in me for other parents. I'm an advocate for parents to love their healthy babies while you have them because when they aren't healthy it kill you.

Now unfortunately this post won't have pictures, but I will try to put them in later.

He had his chemo two weeks ago, with a catheter through his chest straight to his heart. It's scary as the nurses made abundantly clear that if anything happened during cap changes or dressing changes he could totally bleed out. Do you know how scary that is? It's horrifying.
But while we were in the hospital they had given us these really creepy dolls. One had a catheter in its chest like him. The other was used to practice our shots on him. Yes, for 10-14 days after his chemo we have to give him shots to help his immune system stay up. Which wasn't fun. His poor thighs started callusing because he needed it longer than 10 days since his numbers weren't where they were supposed to be.

Can I just say I have become far too comfortable with medical terms? Sure I want to be a nurse but I want to learn these things in school, not because my son needs them.

After his chemo he had a huge issue with throwing up which was causing him to lose weight. They were giving him two IV medications through his IV in the hospital around the clock. When we tried to give them via mouth and that just made the puking worse before they finally had the cancer center where we do his labs give it to him through his line. Oh thank god! As I said previously, life saver!

He hasn't lost his hair, he's becoming happier, he's finally got a tooth.


But.
I still have a hard time accepting all of this.
I want my baby healthy.

Anxious about Chemo

So tomorrow is the day.

Quinn got his broviac catheter today, which of course was another "under anesthesia" procedure. How many times will my freaking 6 month old go through this? He's gone under as many times I have my entire life. It's insane. He's doing alright though. Really fussy, puking a lot, angry a lot, and teething(we think).

But tomorrow we start Chemo. Carboplatin, Vincristine, and Filgrastim. All of those are such foreign words with which I'm sure I will become uncomfortably aware of over the coming months.

We also got a definite on the minimal cycles he's going to go through. Six. So, he will have chemo one week, we have to give him a shot for 10-14 days after the chemo, then he has to get his blood drawn 2 times a week for two weeks, then a two week break...just to do it over again. This will go on for 6 months. He'll be a year old. His whole life is being surrounded by all these uncomfortable procedures, and experiences. When will my baby be able to just be a normal baby? Worst part, that's minimum. He could have more, could have less. Apparently, though, we won't have to stay in the hospital every time. It'll be an outpatient 2 day procedure when it happens.

But I have to get used to stabbing my baby with a needle.
How do you get comfortable with this?

Sometimes I'm in disbelief with  the situation. Looking back, we've been going through this for only  3 weeks. That's it. It hasn't even been a month yet. What the heck. I feel like it's been forever. Going through the days feels like I'm trying to trudge through a swamp with the wrong shoes on. Like each foot is like trying to lift 50 pounds. I just don't know how much longer I can comfortably handle this. It's so much.

I mean, he's so happy, so developmentally on time. He's just so happy. Why does he have to be so happy? Honestly, I don't know what would happen if he was not happy. I think we would have more issues coping. I think his demeanor is a huge plus. That he can go through all of this and be happy. That he can be poked, prodded, and messed with like a pin cushion; still happy.

My husband and I are dreading tomorrow. We're scared, worried, unhappy, mortified, defeated, helpless...the list goes on. We feel like we're unable to make it better. Like he's going to be so miserable, and be so unhappy. When babies are supposed to be happy, loved, and cared for... He's going through hell, in most people's eyes. I wish my baby didn't have to go through this. But like I said, he's happy. Even still, he's happy. Although we have learned a cry no parent ever wants to learn. His "I'm in pain" cry. It's a screech, squeal, with a raspy finish..it's just awful. I never ever wanted to know what this cry sounded like.

On top of that, he's been puking so much lately. He cannot keep much down, except his pedialyte. I can't imagine how chemo is going to impact him. Not to mention he's going to lose his hair. When everything is supposed to grow, he's losing his hair. I've been undesirably made aware that he will lose his eyelashes, and eyebrows as well. He already lost an eye, what next?

Speaking of that, I have not gotten adjusted to that. I look at him sometimes, and I am looking from the good side. It's like my brain blocks out the fact that he's only got one eye. Like it hurts me so badly, that my brain is trying to protect me. Every time I see that there's only one, it's like a "reshock" of the truth again. I'll be happy when that's done.

I just want to wake up. 
I want to be done.
I want my baby to live a normal, happy, without medical intervention, and just comfortable.

I just want this to be Over.

 

Post-Op

Today, my baby boy is now a 6 month old. Not only that, but today is the day after he had his eye removed.

So we went into the hospital yesterday around 6am. Had to be there in enough time to get everything settled. We had both my daughter, and son. So it was definitely an interesting morning. Neither one of them had eaten, and neither one of them understood what was going on.

Sitting in the waiting room was OK though!

Then when we finally got in the back where the pre-op area was, that's when the fun began! It was literally just my two kids in the back, and we were just waiting. There wasn't much to do. Both were hungry, becoming angry, and then the eye drops. That was the BEST part.

He chewed on everything that he could fathomably chew on.

After a while, lots of doctors, and more family showing up they finally started having me sign all the paper work for everything. Having me explain, which kind of made me upset. I understand he's losing his eye, I know which eye, I really do. So, why have me sit here and tell you? Shouldn't you know as well? 

Anyways. Around 7:30 they finally took him back. For a long, oh so very long time. I came back around the waiting room at 8:30 because the doctor who was actually going to remove the eye wanted to talk to me. Explain to me what was going to happen. Which I really didn't want to think about. Not only was it a miserable thing, I was so exhausted that my emotions were kind of on the peak. But I tried to hold it up.

Finally the original doctor came out around 11am to talk to us. She told me that the right eye was done mostly, but it they were closing up. However, the left eye, his good eye, still had the small tumors we had seen two weeks prior. When we first saw them, they were lasered by the doctor in a sort of emergent way. Well, they were still there. 

Only bad thing was, one of them had shrunk by 50%, but the other one had grown by that amount. Even with being lasered it still grew. So the thing about trying to avoid chemo? Good luck with that. We have to go back in next week on Friday. If the tumors are still there and/or have grown, we will be starting chemo the following week on Monday or Thursday. 

So we removed the eye, and he STILL will most likely need chemo. Also, the laser treatment apparently caused a slight bleed in his eye. Exacerbated by being put upside down in any way. 

Anyways, when he finally got out, he was OUT. He did not want to wake up at all. Honestly, neither one of the kids did. 

Originally, he had come out with a tube still down his throat and a breathing mask, but he was out for around an hour.

Watching my 2 year old like this, was worse than I expected. Apparently she has some retina discoloration, but it could be normal. So we have to wait on that.

As you can see, not the happiest thing ever, thank god for medicine.

He had that huge bandage on his eye until this morning. It was an attempt to keep him from getting to it in the majorly worrisome process. However, they've taken it off. It doesn't look that bad. It's not as scary as I thought it was going to be. Even looking inside the eyelid isn't that scary. I'm definitely surprised, in myself. That was one of my major concerns. 

As you can see, he's still decently content. He's still happy. But our road still isn't over. The biggest concern now is that I do not want him to lose his eye. If he loses his eye, then he'll be blind. Right now it's close to his primary area of vision, and getting closer. Hopefully he won't need chemo, and lasering it again helped. However, if it doesn't then we're going to do chemo. It's becoming a huge fight to save his vision, and I wish he wasn't so unlucky. :(

In 8 Hours Quinn Will Have One Eye

Yes. You read that right.

As of the dreaded call this morning came to be, we're skipping chemotherapy and going straight towards eye removal. We're not doing anything else. There still might be chemo. There still might be other things. But as of now, 8 hours from now, he will lose the eye.

Today has been a moderate blessing, in different ways. I was able to speak to my boss, and he offered me the weekend off. The whole weekend. He was actually(in his own way) empathetic towards my situation. He was nice. Kind. It was weird, honestly. I didn't expect anything like this from him, and have been scared. I couldn't believe his kindness. Again, in his way. He told me it wouldn't impact my hours, or anything. I'd still be held to the same level I've been at.
My mother is actually who convinced me to do this. She met me at work, as it was apparent I wasn't doing well. One other doctor called me, and all I could mutter on my drive to work was "Yeah" "Ok" "Uh-huh". My mom spoke to her later, and apparently she could tell I really wasn't all there. This was all moving so fast.

My brain is so jumbled. So confused. I don't even know how to process this. I had just gotten moderately comfortable with the thought process of him starting chemotherapy, and now I need to erase that and get comfortable with him losing his eye. Hate to be curt, but how the hell does someone become OK with that?! I honestly don't think they'll ever be a day where I'll be OK with it. I don't think I'll ever be able to completely accept it. Or think it's "fine." I just don't think that will happen.

On the blessing side though, I was able to have a professional photographer get pictures of him, and us all. As a family. My mom was in some as well. She did it completely for free, because you never know what's going to happen. I'll share some of those pictures:

Here you can see how his bad eye has become lazy. It's not even the same direction as the other eye. Plus, the tumor is causing the eye to be shaped off.

Mommy, Daddy, Baby

Here, you can also see the eye.

It's become more apparent how damaged the eye really is. It's becoming round, causing his eyelid to be more open than it should be. Which makes it look "off." Also, the eye is becoming lazy. It doesn't look the same way as the other eye. Which just shows the damage.

Apparently, it's more damage than good to keep the eye.

But I still sit here.
Why me?
Why him?
Why my baby?
I did everything right in pregnancy, birth, all of it. I went to every appointment, took prenatals, and everything else you're supposed to do. Why me?

One of these days, I don't know when, I'm going to fall apart. I don't know what kind of scene this is going to look like, but it scares me.

Reluctantly Admitting Defeat

This momma right here, is one worn out, exhausted, depleted, emotional, and just distraught individual.

My son, my almost 6 month old son, will be starting Chemotherapy on Thursday. That's only a couple days away. And of course, I will be working. I have Thursday off. However, I do not have the rest of the days where he will be stuck in a hospital, scared, in pain, and miserable(as far as I understand chemo).

The thing that gets me the most?
He doesn't even have TEETH yet.

He's having to go through all these horrendous things, and he doesn't even have any teeth. As things keep happening, I keep coming back to this. It astounds me. It dumbfounds me. Of course, it depresses me. But Chemo? He's so little. So vulnerable. So breakable.

I'm sitting here, completely incapable of forming the proper word structure to make sense of how I'm feeling. I'm horrible, to say the least. Work has consumed me at this point, as it does any new manager at a store, but I'm helpless. Even if I'm there, I can't fix it. I can't help him. I feel like perhaps I've failed as a mother. I can't do anything for him, but be there. Just be a person. All these people around me have gone above and beyond, helping financially, allowing us the opportunity to breathe easy knowing our bills will get paid. I'm astounded at the way these individuals have grouped together to help me. Help my family. Help my son. 

I just can't form a functional thought. Times like now have made me realize quite how happy(if that's even possible) I am that I didn't continue school. I don't think I would have been able to. I don't think I would have been able to function. I think I would have dropped out anyways, whether before or during. Or failed, which would have been worse.

They will keep my son for up to 4 days, depending on tomorrows results. He will do the aspiration of bone marrow and spinal tap. So not only will he be miserable from all the anesthesia, he has to have chemo. Chemo. I can't even wrap my head around this. I just can't. My 2 year old is jealous, doesn't understand. My husband and I are arguing like we hate each other, probably because right now we do.

Right now, we blame ourselves. We wonder what we did wrong. What we could have done differently. It's made us sour, harsh, and easy to blame. We've become bitter. Angry. Resentful. The list could go on.

As of right now, my baby is in Sacramento, and this momma is alone. Sitting in a house. With no one.
All I want to do is cry. Beg for this to just be a horrible nightmare. 
Can't I just wake up already?

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.