Sunday, November 17, 2013

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.

Friday, May 17, 2013

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?


Wednesday, May 1, 2013

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.