Saturday, May 31, 2014

Update - It's been a year, almost.

It's amazing that I can sit here and write this.

A year ago today, I had absolutely no idea where life was going to take me. I had no idea if my son was going to survive, or if he would lose his battle. The scariest part of my life, thus far, was going on and I had absolutely no idea what to do about it. I guess, in hindsight, there's really nothing you can do other than function. You just move along, sort of like a robot. I remember feeling like I wasn't doing my life. I wasn't the one making choices everyday, or functioning. Someone else was. It wasn't me, because there's absolutely no way that I  would be able to handle this kind of stress. This kind of situation. It's phenomenal.

Yet, here I am. About to give the biggest update that has truly been long over due.

Quinn was considered to be tumor free as of July 2013. They said that there were no new growths, no more seedings, and they could barely see signs of the tumors being there. However, we had the fun news of being told that the first six months after was the worst period of time. Well, he got through that. As of January 2014, he is considered to be in remission. Sadly, he's also considered to be decently developmentally behind in his speech, which is guessed to be due to the hospital stays, sickness, and general nature of chemotherapy. However, we have been undergoing speech therapy sessions with an amazing woman, who I swear has the patience of a god, since January and he seems to be doing better.

We ended up having a decent party for Quinn's first birthday, because it was also a celebration of no more chemo. It's amazing how bald he was, and I'll show pictures for a comparison. Granted, mommy just gave him a hair cut recently. That chemo hair was just not making him look the best, haha.

Mommy got creative, and decided to make him a t-shirt.

It's amazing to think that we weren't sure if we would be able to see this day.

Halloween Quinn

His last EUA - which was FANTASTIC!

Mommy's not-so-perfect hair cut.. :)


It's still funny, though. Sometimes when I'm talking to people, I casually mention the fact that my son has cancer.

Which let me take a pause here for a second. Did you know that even when there are no tumors, no seeds, and whatnot - your still considered to have cancer? You're in remission, sure, but you still HAVE CANCER.  I've always hated this. HATE HATE HATE. I want to be able to say not cancer.
Anyways, though....

It's amazing the responses we still get from people. The initial response is generally, "Oh my god, I am so sorry." Which, and feel free to call me whatever colorful names you would like, is always in that disgustingly pathetic sorrow tone. We get it. Our kid had cancer. Cancer sucks. Big time. However, we're over it now. You should get over it to. I don't know, maybe this whole situation has made me a bit sour, but I'm a bit like that now.

And here I am getting ready to go into nursing school next year. It's ok. Experience is good! Get that skin now, haha.

In other fun news, to add to this, life has thrown us some fun curve balls. I'm not sure, more so I don't remember, if I mentioned it before but Quinn was positive for the mutation for his kind of cancer. Sadly, at the time, we were unable to test ourselves due to the insurance refusing to cover it. So we moved on, as we didn't think we were going to have anymore children.

However, life had another plan for us. Again.

Found out the week after my birthday that we are expecting another child. Another little bundle of baby. At first, I was terrified. I was supposed to have an IUD, but that didn't exactly pan out. Luckily, I suppose, the thing fell out. So at least that wasn't going to be a problem.
I'm sure you could imagine my surprise.

Don't get me wrong. I took a lot of tests. I mean a lot. A lot. I would say easily in the....upwards of 20's. I didn't believe it. Not at all. Although, once we got done with the initial panic and realized we had a healthy baby things calmed down. Especially once we realized we had a healthy baby.
Happy gummi bear baby. Seriously, it looked like a gummi bear.
But then something was brought to our attention - what if the baby has your sons cancer?  Something neither of us had thought about before. Neither one of us considered it. We weren't thinking more kids! We just got through this one, and boy did this one throw us for a ride! What would we do? How would we respond? My doctor asked me many questions, like if it carried the mutation, would I terminate. What would I want to do. Would anything change.

Sadly, I don't know. I still don't know.

However, finding this out allowed us to get transferred to a specialist. Luckily, this time, my insurance does cover the cost of the testing so we should know. However. I'm terrified. I've been terrified. I just keep sitting here wondering - could I do it? Could I do all that heart ache, trouble, crying, screaming, hate, anger, resentment....all over again? I really, really, really, just don't know.

Luckily, things are OK thus far. We saw the specialist last week, and got the blood tests done. So for now, things are fine. We have a perfectly formed, functioning baby.

I have to focus on this.
I have to.
I'm afraid if I start thinking about the what if's..again...I'm going to make myself crazy.

So while I make myself crazy, I'll try to keep you all updated.
Hopefully, we'll have my results in 2 weeks. My husband should be getting his test done next week. Unfortunately, his insurance hasn't gone through yet, but we're going to figure it out.

Until then...

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.
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?