Monday, February 11, 2013

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.

 

Friday, February 8, 2013

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. :(



Thursday, February 7, 2013

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.

Tuesday, February 5, 2013

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?