Struggles

I would like to preface this post with a reminder that I know how lucky my family is. We are fed, clothed, and kept warm and there are others who aren't. Our cancer diagnosis isn't terminal like many others. We are rallied around by those who love us. I know we are blessed. But that doesn't mean I'm not allowed to have bad days or think the following ramblings. (Please excuse any offensive language.)

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Am I a bad mom? While those exact words may not come out of anyone's mouth, it has been hinted at. Am I a bad wife? The same-it's never been said, only hinted at. I am a stay home parent so obviously I have the most time to clean the house, cook picture perfect meals from scratch, keep up with laundry and of course make sure not a single crumb is left on the floor at the end of the day. (Joke is on you!) the truth is, I'm far from being to accomplish any of these things. 

I had a friend who was talking to me recently, while trying to figure out the next way to bless our family. In not so many words, she pretty much said she couldn't imagine walking in our shoes. I cried because no one has been THAT honest with me since the beginning of this. I've held so much inside of me for that reason because I don't want to scare people with the dark places that exist inside me. It's really, really dark in there. 

People call me brave. I'm not brave, you fools. I'm scared as hell. There are so many details in my head that I've learned from our oncologist, that I spare people the details when they ask. I give generic answers. Like the likelihood of Aidan's tumor regrowing. The effect that the stupid tumor is having mentally and emotionally on AIDAN. He is not the same babe that went into surgery to remove that tumor. And I am most certainly not the same mama. 

I don't know how in the hell I get out of bed every day. All I want to do is hide. And sleep. And forget. God, I wish I could forget. But I'm forever changed. This dark place inside of me is haunting and it is what steals my motivation away. If I were to be evaluated by a medical profession on my mental/emotional state, I'm 99.9% positive they would find me legally insane. If I start crying, I won't stop. If I let every emotion that's flying around in my head, out of my mouth, it's game over. People will literally look at 

me funny. 

The easiest tasks are so hard for me. My sink is full of dishes? Who gives a crap, my kid has cancer. The kitchen floor has food from 3 days ago on it still? Go to hell, my kid has cancer. CANCER HAS RUINED ME!!!!! I have a huge heart for others suffering, but no room for mistakes from myself. The stress makes me tell. A LOT. And it's embarassinf because I'm so beside myself that I can't handle even the smallest conflicts anymore. My poor kids.  But I'm doing the best that I can right now. Just pray they don't remember their psycho mother during their toddler years. I hate to think I'm crushing their spirits, but I literally don't know what to do with myself. I know I need therapy again, trust me. But will that fix the damage I've already caused? 

Just know that cheery, positive and encouraging Courtney, isn't all she's cracked up to be. I'm hurting. But it's MY choice to display what I want to others. 

Friend, and you know who you are, thank you for your honesty. It's what I've wanted the most-someone who I can tell all these feelings to. 

Let's Get Real

14 weeks. Most people mark such a time frame in their pregnancy. Or how old their precious addition is. I mark it in how many weeks we have left in our 60 week protocol for chemotherapy. Most would be jumping for joy over this, elated to be almost finished with it all. 

You see, I am not most people. I am a worrier to the core. I live in fear, when I know better than to focus on such negatives. But with the end of chemo within my reach, thus signaling time for our Make-A-Wish trip to happen as well, I am plagued with worry. Surrounded by uncertainty. Aidan's prognosis is 90% survival after 5 years. He's not considered in remission until 5 years post treatment. What they DON'T tell you is what can happen during those 5 years. Relapse. A curse word in the cancer world. An earth shattering, soul crushing diagnosis. Aidan is at high risk for relapse for the remainder of his life. Will I EVER be able to live a normal life, without the fear of cancer plaguing me? 

I can't wait for that last day of treatment. I get teary eyed thinking about celebrating it. The end of a painful, terrifying time in my life. I'm sure I'll breathe easier for awhile. It will feel like a honeymoon! I dont have to ship Addilyn and Olivia off to someone's house one night a week so I can take Aidan to early morning chemo. We get to be a typical family. The uncertainty lies in this: right now I know Aidan is in good care and I'm not worried about this tumor because it's being treated and showing a response. After chemo is done. That reassurance is no longer there. But I crave reassurance. CRAVE IT. 

While this time in our lives is just temporary, I can't wait for the day that I can spend equal amounts of time with all of my children and not just focus on one. I'm tired of feeling guilty about my girls being shipped off to someone else's care. I want them in mine. I don't want to feel heartbreak each time I drop them off. I want to drop all three of them off for a weekend of fun, not a weekend bc Aidan is in the hospital. I just want it all over with. 

F U cancer. You may be winning the emotional battle, but you will NOT win the physical battle. I will fight until I can fight no more to make sure Aidan gets to live a typical life like any other child.  But I hate that I can't protect him from further hurts. 

No Guarantees

Tonight as I was tucking Aidan in, the song 'Wanted' by Hunter Hayes came on so I started singing it to him while he held my finger. I love singing to my kids. I watched as his eyes grew heavier and heavier, then for a second pop open and look into mine. I could barely hold it together. It makes me ache to know I cannot guarantee anything for him like I can his sisters. I cant guarantee he won't relapse at some point in his life, I can't even guarantee he will start kindergarten cancer free. And that kills me.

Music

"All I knew this morning when I woke is I know something now, know something now I didn't before."

Isn't it amazing how a simple line from a song can bring your world to an immediate halt? How it suddenly reminds you, on that sunny day while you're out living life like nothing is even wrong, that you're actually struggling to make it through each day. These lyrics came on and I immediately thought about how I know things now that I didn't before all of this cancer stuff happened. Damn those song lyrics for bringing you back to reality. There are many of you that trigger it.

As we approach flu season (aka lockdown in this house!), I'm overcome with jealousy, bitterness and a little sadness. Not because of just any ol' reason though. Rewind to 3 years ago and I had just given birth and was watching my tiny 2 pound babies fight for their lives. That's when I became a germophobe because things like the flu and rsv were DEADLY to my tiny loves. I lived in fear daily. Now, rewind to 2 years ago and I was preparing to take my babies trick or treating! So exciting considering they spent their first Halloween in the NICU. Then the fun dissipated quickly as they all got sick a few days after begging for candy. Finally, rewind to 1 year ago and I was living in limbo. Were these my final days with my son? His final birthday that I would get to spend with him AND his sisters together? Again, I started to live in fear. I had to keep him healthy for his upcoming brain surgery, so trick or treating was out. Bummer. And now, in the current, once again, I'm not allowing my child his own childhood, because of cancer. No trick or treating yet again this year.

I'm so jealous that I don't get to load my kids up and go shopping whenever I want without a care in the world about them getting sick. Keeping germs at bay is my fulltime job. I can't let then play outside on a somewhat chilly day because I don't want anyone to get sick. And boy do I feel guilty because I'm robbing my girls from their childhood too, because their brother has cancer. It's the herd mentality here-if one gets sick, they're all going to get sick. And my fear makes it so that the fear outweighs everything. My poor kids :(

I miss being normal. I miss not being that hovering parent at the playground or while grocery shopping and he touches the grocery belt (gag!). I just miss what it is like to be a relaxed parent! But now that I just explained it to you, maybe I haven't ever been that mom.

I want a redo of my kids' childhood. One where mommy doesn't feel guilt over every decision she makes to protect the health of one child, but ultimately 3. Someday I can give that...

Perspective. Again.

I am at a loss for words this morning. Facebook greeted me with the news of the passing of a sweet little girl. This family has been to Hell and back. And now to Hell again.

Sweet baby E had never left the hospital, she was 18 months old. She struggled with many health issues surrounding her lungs mainly. Had recently been given a new way of life via a trach. She was a changed babe-more active and energetic than I had ever seen her. And yes, that means I've personally met her and her family. Several times. Her momma was someone that I spent a decent amount of time with when Aidan and I were in the hospital together. I've interacted with baby E. Such a joy. And now I'm broken just trying to process the fact that she's no longer here. Her mom will probably never want to step foot in that hospital again.

In my previous post, I mentioned that the last year of medical crisis with Aidan has taught me perspective. Once again I am reminded of perspective.

The quote, 'the things you take for granted, someone else is praying for,' comes to mind this morning. While I feel as though I don't necessarily take having all of my children for granted, I do understand that my friend could now view our medical circumstances as a dream for her. She would give anything to have her daughter here, fighting cancer, than to not have her here at all. And for that, I feel selfish. Selfish because I cry over the fact that my son has cancer-when I definitely know how different our story could be. I could be crying over the fact that Aidan HAD cancer, but didn't make it. And now, I have to watch a friend ache over her loss of a child who HAD medical issues.

What do I even say to her? What do I even do for her? All I can offer are my prayers and leave the rest of it up to our merciful God. His plan is better than ours, no matter the cost.

One Year Later

One year later is today. As the day has passed, I've found myself reliving that horrifying day. Aidan going limp in my arms, crying hysterically thinking my son was dying, the ambulance rides, and the moment they found something in his brain.

We had just gotten married a week and a half prior. And the kids' 2nd birthday was in 11 days. I remember thinking, 'what if this is the last birthday I have with Aidan?' The aching. The sadness. All of it still feels fresh to me.

But it's not fresh. That happened 1 year ago. My son is thriving, beating cancer, and taking it all in stride. What a hero.

Thank you God for the women you placed in my life over the last year. Thank you for being ever present in my marriage during the difficult times, and in my relationships with my children during the difficult times, too. Thank you for everything. If I had to sum up the last year in one word, it would be:

Perspective.

Where will you find peace when you cry?

I have so much to say, so much to catch up on...but my heart is heavy right now. For some reasons that I can explain, but a lot for reasons I can't put into words. Trusting Jesus to be my comfort and my rock because I haven't felt this uneasy in months. This journey as a mother to a child with cancer is full of the unexpected.

I have this song on repeat right now. It allows my aching heart to be reminded of the promises.
http://m.youtube.com/watch?v=oycQAghbFLw&feature=plpp

If Only For An Hour

Today's temperature reached the 80s, and boy was it a breath of fresh (warm) air for the people of this household! The kids have been cooped up inside all winter long between Aidan's brain surgery, port placement surgery, and chemotherapy so it was absolutely fabulous to put them in the backyard to play! And get MESSY! And not worry about Aidan catching anything.

Metaphorically speaking, that hour or so we spent outside today was the lightest I've felt in a long time. I got to see my kids be kids, which is something people take for granted every day. Do you even know how it feels to look at your child, while he fights for his life but doesn't actually look like he's fighting for his life, and know that you are preventing him from living a normal toddlerhood for fear of him becoming lethally ill?? Not only does he suffer because of his cancer, his sisters suffer too. They can't go be normal toddlers either because if they are exposed to something and are able to fight it off, it most likely means Aidan won't be able to fight it off. Heartbreaking.

But today, Aidan got to run and jump and pick a dandelion and say, 'mommy, corn!!!' as I giggle and correct him that it's a flower and not to eat it-but he ate it haha! He had skinned up knees, dirty hands, and the ever innocent demeanor. Please, baby boy, don't ever lose that innocent demeanor. My heart relies on it so heavily....and to see you today outside playing like you didn't have cancer, was a breath of fresh air. At least it was until I sat down and went through the pictures.

Today, the cancer is real. It's real every day don't get me wrong, but tonight as the weight came crashing down again on my shoulders, I was reminded of my reality.

Aidan John, I love you more than words will ever portray. I love you so much it physically hurts. In those moments where I ask 'guess what,' and you respond quickly with 'love you mostest,' I pray that that you will always 'love me mostest.'  When you wrap those arms around my neck and give me that precious 'ooohwah' kiss, I just want them to linger. Never stop, never go away, and for me to never forget how it feels in that very moment.

Playing outside today was perfect after a long winter stuck inside. And not thinking about cancer for that time was perfect, too. If only for an hour baby boy, if only for an hour.

Proud To Be His Momma

It's been awhile, I know. Not like anyone noticed, I'm using this for therapeutic purposes anyways.

Aidan continues to thrive. We had 2 hospitalizations in March-the first and last week. He also finished the aggressive part of his chemo protocol and began his maintenance. We've only gotten 2 weeks into maintenance and have been on hold because if hospitalizations and low counts. He's growing still, eating incessantly and is all boy. I love him oh so much.

I hit a wall today and realized that it's been one month since Aidan received chemo last and I'm quite antsy about it. And emotional. I want to keep plugging along. My soul yearns for it. I want things to keep going because the more delays we have, the longer treatment takes (obviously). With no delays we were looking at finishing up chemo in February 2014. Now it's looking more like early Summer 2014 :( and that makes me ache.

Aidan says the word 'chemo' clear as day now. He takes his medicines by himself now. He's losing hair now. His eyebrows have noticeable chunks of hair missing now. He's growing up now. With cancer.

My husband and I recently celebrated our 5th anniversary together (since we met), and it gave us a chance to reflect on all that we've been through. Nothing about our relationship has been easy. It feels as though everything is being thrown our way and it's all trying to tear us apart. We won't let it. We absolutely will not.

I've finally taken the time to get my health in check and am having surgery soon to fix a big problem. I can't wait. My kids need me and this surgery will allow for that. Several people think the timing is incorrect, but to be honest, not time has ever been the right time in the last 3 years. No more waiting.

I'm still clinging to my faith end the promises from God. He is my sustenance. My hope in tomorrow. And my hope in this journey. Thank you God for being omnipotent and omniscient. Thank you.

Why Me?

These thoughts have been weighing heavily on my mind the last few weeks but I just haven't found the 'right' words to portray them. They make sense to me as I babble all day, every day to myself while changing diapers, redirecting, feeding, breaking up fights and putting mattresses back on the floor. But I can't stop asking myself, 'why me?'

Why did God chose me to be the mother to these 3 children? Why did he BLESS me in such a way, that no words can possibly describe. Why did God equip me with the desires to give these children the best that I have, even if it leaves nothing for me at the end of a day?

But the question I ask myself multiple times a day--why was I, Courtney Trumbauer, chosen to be Aidan's mother. I don't deserve to call him mine. I don't deserve to be a witness to his incomparable strength, charm, and undoubtedly superhero ways. I don't deserve him. He pushes me. He makes me try harder. He makes me find that last little ounce of strength at the end of each day, to do something as easy as spraying bleach water on the toys and sanitizing surfaces he touches to keep germs away. All while he laughs in the face of cancer. My sweet 2 year old boy has no idea the impact of his innocent demeanor and undeserving diagnosis. No freaking clue.

Yet he's mine. I get to be the one who restrains his hands each week when his port is accessed, and he DOESN'T EVEN CRY. I get to be the one to snuggle him while poison drips into his veins. Then I restrain his hands again while they remove the needle from his port and we get ready to go home.

But you know what? He loves me for that. He loves me for being that constant and I hope that never changes. I will always be his biggest advocate, and the same applies to Addilyn and Olivia. Mommy will never stop fighting and advocating for you.

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.