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.