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'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.



  1. Amanda, I want you to know how much I (and so many other people) are thinking of you and Quinn on a daily basis. You have so many people rooting for you and praying for that sweet boy of yours. I hope it helps you to know that when you feel alone during this battle. I have faith that one day this will all be just a distant memory that you & your healthy Quinn talk about from time to time. You can do this. Quinn can do this. You will get through this trial that seems endless right now. A million hugs to you. Thank you for updating on here and BBC; you have a lot of mamas who are very invested in your story & we wait anxiously for updates on "our" Quinn. xoxo

  2. Hello Sweet Amanda,
    How did Quinn do with his chemo honey??? Im so sorry for not keeping in touch better.I just got out of the hospital.They had to put another drain in.And it looks like i will have to keep this drain in till my chemo is done.Then i have to have surgery to close the hole in my colon.I cant win.But all i can do is think of your sweet baby boy Quinn.How is he handling his chemo honey?? Please know im here for u.Chemo is not easy on anyone.And he is just a little guy.Brakes my heart knowing what he is going through.If u ever get a chance honey.Please update me on him and u.I know this has to be so hard on u.I know i see it on my families faces.Love u guys.And i pray God will heal Quinn.And he will beat this!!! Praying and thinking of u always.And i do send all my love to u all.And tons and tons of loving hugs to u all too.