Catching Up

It's been awhile since my last post, I've been trying to sort through a lot of things.

Aidan is doing so well it's unbelievable. We're still going for weekly chemotherapy treatments, and thus far he has experienced no hair loss/thinning or vomiting. I do think he's been nauseas a few times but he obviously doesn't understand it. He gets super whiny and inconsolable and will ask for food or something to drink but them when I give him those items he doesn't eat/drink them. In instances like this we have preventative medications on hand for him. So thank you Zofran for helping my little boy feel better!

I'm not going to lie, I've been quite the skeptic during this journey. It started off so scary and not like I imagined. And here we are 5 treatments into our 60 week protocol, and my child has not skipped a beat. Every week at chemo, the Dr. in charge and our favorite Hem/Onc fellow, Dr. McNew (never thought those words would come out of my mouth..favorite oncologist?? Weird.), come to check on us, see if we have questions or concerns and then they ask me a bunch of questions. I have asked them the last 2 weeks now, the same list of questions thinking that maybe I'm living in anxiety waiting for the stereotypical things to happen to Aidan, when they're not going to at this point. If his hair hasn't fallen out yet, could it still? He hasn't vomited at all, is that normal? He's doing so well, when is the other shoe going to drop? They reassure me each time too. He's tolerating treatment well, and we're VERY happy with his progress. They said they couldn't ask for anything better. I could-it would be him not having cancer to begin with.

What a tough job it seems to be, as a pediatric hematologist/oncologist. To deliver THAT type of news, to be the one to spit and sputter out statistics and percentages and even the morbid time left to live to the parents. I even spoke with our fellow about these thoughts of mine, after all he does have an 8 week old! He is phenomenal, let me tell you. Always upbeat, Aidan LOVES him, and he's kind of dorky in the sense that he wears ties that have characters or ice cream cones or even Rudolph with a red flashing light nose. He is amazing. I'm so thankful for our team of drs in Iowa City. Not only did they save my babies' lives when they were born far too early, but those relationships that I've fostered with the nurses and doctors are indescribable. They touch me so deeply that to even try and explain what they mean to me, I choke up.

I've been on cruise control for awhile now. It didn't hit me until this last week just how stressed out I really am, how anxious I am, and that I'm not sure how these things haven't taken on physical form and started oozing from my pores. Yes, I'm serious, it's that bad. I've been grinding my teeth at night and not realizing it. My entire system is off whack. I'm exhausted, I have hardly anything left to give to anyone. My husband is working so much that I feel like a single parent. He works hard for our family, to provide for all of us so I can stay home, but I wish he didn't work as much as he does. But I know I don't have any other options but to grin and bear it. To glorify. To be a disciple. I will carry this emotional weight of stress and anxiety as long as He is benefiting from it.

Even on my hardest days with my babes, I've been blessed with suddenly being able to see the small things. To appreciate them, to cherish them, to deposit these little things in my special moments memory bank, and to know that THAT is why I'm their mom. No one could possibly love these kids like I do. Heck, I still remember the weekend they were born, and how I told Patrick I never knew it was possibly to love something do much that it physically hurt. When everything seems stacked against me that day, I can hardly hold my head up, they give me purpose. I couldn't imagine my life without them....and it's even truer now than ever before. Want to know why? Because of cancer. It took cancer for me to take a step back and reevaluate the important things. It took cancer for me to start this blog. It took cancer for me to reach out to God and focus on our relationship and how to be a testimony in a troubled time. Cancer isn't always negative, sometimes cancer gives you a reason to start living and loving again.

The Reality Of It All.

So, an update: after Aidan's hospitalization after his port placement, he recovered well and we went home (and stayed home) for Christmas. There was one chemo treatment between discharge and Christmas that went fine.

December 27 Aidan spiked a fever again, and had a cough that I was not comfortable with. I packed a bag and took this shift, leaving daddy and the girls at home. I was pretty optimistic about this stay since the last one was rather routine. At least until the respiratory swab came back positive for influenza A. One of the two things our oncologists told us would be the most life threatening things for Aidan to catch. OF COURSE!!!!!! I'm pretty confident that I am the poster child for Murphy's Law: whatever can go wrong, will go wrong.

Days passed. Neutrophil counts continued dropping, or stayed the same. He dipped down to 30 on his lowest day, but by the way he acted, you would've never known. My neutropenic superhero. Then New Years Eve came, and in the hospital we remained. I was, and still am, in a world of hurt. We only made it two weeks before landing in the hospital again-is this going to be how it goes for the remaining 58 weeks we have left of treatment? Am I going to be this nonexistent mother to my daughters, because Patrick goes to work and I go with Aidan? Are my daughters going to think I abandoned them, and worst of all, will they REMEMBER that mommy was gone a lot.

If you would've asked me almost 3 weeks ago, how I was doing, I would've said I'm hanging in there. This is going to happen and we just got a taste of it firsthand. I thought I had began to deal appropriately. Ask me today how I'm doing? The truth is, I'm not okay. I'm angry. I'm depressed as hell. I'm lost. I'm hurting in a way I never, ever knew existed. You name the emotion, and I've played it out in the last 5 days. I've lashed out at those I love the most and caused hurt. I've made a fool of myself. I've found myself to be having the pity party I said I didn't want, only to realize that maybe somewhere deep inside, I did want it. I wanted people to comfort me and allow me to cry. Maybe it would've been a little healthy to feel sorry for myself?? But I didn't allow it because I know what happens when I let myself go there-its a land of no return. Pity Party City: population 1.

I've had so much one on one time with Aidan this week. When he's getting tired, he will say, 'momma rock,' meaning sit your butt down in the rocker and snuggle me, darnit! In those quiet, lovey, snugly moments with him, I've had so many conversations with him, with myself, with God.

Ones with God are usually me begging for protection of Aidan during this, and also me saying that I know He gave me this battle because I'm strong enough to fight it (with Him), but God, I just don't feel very strong.

Ones with myself deal with shame, anger, sadness, embarrassment, and lots of tears. They just won't stop falling.

And the most precious conversations, with Aidan are of me rooting him on and giving lots of reminders. Telling him that I know this sucks, that I'm sad that he understands a lot of what's going on, and how I will do everything I can to get through this with him. I tell him how sorry I am. I tell him that things may not always be easy throughout this, he might get sick, he might lose his hair, he might spend a lot of time in the hospital. But that no matter what I'm always going to be there, right beside him, wishing and begging that it would've been me that was diagnosed with cancer-not him. I hope that no matter what, no matter how psycho I may become, how emotional I am and will continue to be....he knows that he's my hero.