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.

This Wasn't My Dream

Yesterday was the big day. Port placement day and first round of chemo. Surgery started late, was quick and successful. Then we went straight into his first treatment. Everything was going smoothly....a little too smoothly. Right as we were being discharged, we mentioned how we thought his port might be hurting so we were going to give him Tylenol.  Our NP reminded us that no matter what the circumstances, we HAVE to check his temperature before giving Tylenol. Fevers can be life threatening. So we asked her if she could quick take it for us. Dun dun dun! Her exact words: I'm sorry guys but you aren't going anywhere. (insert breakdown here.)

This wasn't supposed to be the way yesterday went. I just cried and kept saying 'this wasn't my dream, this isn't supposed to be happening to us, not my baby!'' Everything was outpatient. Or at least it was supposed to be. Joke was on us :/

Daddy took the first night shift, I went home and took care of the girls this morning/afternoon when we had a lapse in care for the girls. Aidan's fever got as high as 103, and still hasn't broken. The good news is that we didn't drive all the way home to find out he had a fever and then have to drive allllll the way back down to the hospital. It's over an hour drive. The bad news is that fevers require a mandatory 3 day hospital stay while blood cultures are done. No growth yet. And his last fever check around 9 was 37.7c (which was down from 38.2c when I first got here tonight around 7:30-yay!)

Baby boy is resting peacefully right now. The hospital is not home, but we have to make the best of it.

As the selfish, painful, and angry cries of 'this wasn't my dream' spilled out of my lips, and other choice words floated through my head, I had to remind myself that DUH! Of course it's not your dream Courtney. This plan was set in motion long before you and I were even thought of....this is God's will. I struggled with being angry and just flat out begging God to protect Aidan. I played the song 'Redeemed' by Big Daddy Weave over and over when I was alone with Aidan for a bit last night, I laid my hands on him and I hung my head and focused on those lyrics:
'Seems like all I could see was the struggle
Haunted by ghosts that lived in my past
Bound up in shackles of all my failures
Wondering how long is this gonna last Then You look at this prisoner
And say to me, "son, stop fighting a fight that's already been won.'

So I stopped fighting, I begged and pleaded that God would protect Aidan and help me. Lots of tears, a few phone calls and a decent nights sleep later....I was given a fresh new day to try again. Thank you for grace.

Below are some pictures from our day yesterday. Hopefully none of you ever have to snap any similar photos during your lifetime.

What Are The Odds

1:8100 were my odds of conceiving spontaneous triplets. I could handle those odds. I love my children.

1:10,000 children develop cancer each year. This is what I can't handle happening.

None of this was part of my dream. This kind of stuff doesn't happen to anyone you know, let alone your own children.

God I don't understand, and I know I may never know your true will of this trial....but take away the pain. Take away the fear of the unknown and help humble me to your guidance. Help me to know what to do when Aidan isn't feeling well, allow my senses to be so in tune with what is going on with him that I feel every ache and pain he does. Just so I know he's not going through this alone and I can respond accordingly.
Help me.

-Courtney

Vulnerable.

vul·ner·a·ble /ˈvəln(ə)rəbəl/
Adjective 1. Exposed to the possibility of being attacked or harmed, either physically or emotionally.

I have never been one to tell the whole world my fears, my heart, my own personal struggles. Call me naive, but with as many people knowing what our family is going through, I'm pretty sure my struggles, fears and heartbreak are all obvious. I'm likely to burst into a spontaneous meltdown at any given moment. Of epic proportions no less. And that leaves me vulnerable (read above definition again).

Those close enough to me know that I only cry in front of people I trust, otherwise those with ill intentions will use it to their advantage and hurt me even more. So now I struggle with learning who is really on my side during this.

Ever since I became a mom I can't seem to control the waterworks. I think it's because even though I've always been one to empathize with others, now it's impossible not to. I can't control it, especially when it comes to other moms and children. I wish I could could control it now, more than ever.

So if you're reading this, please do not view my tears as weakness or see me as vulnerable and use it to your advantage to pounce on me. It's really the only way I can express all the emotions flowing through me right now.

"When my heart is overwhelmed; Lead me to the rock that is higher than I."
Psalm 61:2

-(vulnerable) Courtney

Cancer Is Worse Than The NICU

Never in my life did I think anything could be worse than the NICU. Ever. Ever.

But, I've found it: cancer.

In the NICU, the drs came around every day, told you your child's progress and the plan to move forward. Cancer isn't like that. Cancer is much bigger than these doctors, they can't tell me my child's progress and how we are going to move forward. It's literally a day-by-day journey. Or nightmare, however you want to look at it.

I'm doing my best to focus on God's plan for my family. But sometimes I just can't wrap my mind around anything long enough to comprehend that this is happening to us because He loves us. NOT because he's punishing us for past sins.

I'm human and I fail. Often times it's miserably. So while I try to keep God at the forefront, on my saddest days I find He's actually not there because I forgot about Him.

Just for once I want to scream from the rooftops just how unfair this all is. I should be the one with cancer, not my child. NEVER a child. Somedays it doesn't feel real because Aidan acts fine. If it weren't for the scars on his head, you would have no idea anything is wrong. He's my little trooper, my fight, my will to keep going. He's my child. And he has cancer.

This Thursday is his port placement surgery (second surgery in 5 1/2 weeks mind you) and then after we're discharged from surgery, we go right into our first round of chemo: aka 'controlled poison' as our oncologist so kindly referred to it as. I'm terrified. Not of the surgery for once, but of myself. I have all these scenes playing out in my head. Holding my child while he receives his first round of chemo while trying not to fall apart because cancer is so much bigger than me, the drs, the medicines...

But alas, there's that little whisper in the back of my head that's saying, 'cancer is not bigger than Me.'
And there I go, picking myself back up and carrying on, persevering, and trying to maintain life. Maintain normalcy....and just bask in the time I'm given with my family-like the one in the picture.
-Courtney

Overwhelmed

Our family has been blessed by many, many people since the beginning of this journey. Words cannot express our gratitude. From friends who have been there for us at the hospital (you know who you are), to complete strangers sending us cards with money. It is unbelievable. I have been searching for the 'right' words to express our gratitude...but for once, words have failed me.

Last night was Aidan's benefit/silent auction, and yesterday morning was the last MOPS meeting of the semester. What an emotional day. After finding out that we will be driving to the hospital once a week to receive treatment, groups from within my MOPS group have been blessing our family with monetary donations, gas cards, freezer meals for the days that I just can't find the energy to make dinner, and even adopting our family for Christmas. I was brought to tears yesterday during the Christmas message that was given by a sweet mentor mom. It was made apparent that she didn't have the easiest childhood, but she knew that she had a purpose and she shared that purpose with us. One specific part of her story hit close to home: both her and her husband have/are battling cancer. Her husband currently has an uncurable form of cancer. I felt as though she was speaking directly to me when she shared her message. I cried, I laughed. To be as humble and as open as she is about her struggles--I could only dream of that. I still feel as though I have to be the strong one because if I don't, everyone that is watching me will fall apart and then how in the heck am I supposed to look to those around me to help me when I actually do fall apart?? I am praying for two things to come during this cancer journey, and I am sharing them with you so that you can hold me accountable (where possible). One being that obviously Aidan is cured of this heartwrenching disease and that it never, ever, ever comes back. Two....that I would lean on God for guidance, for strength, for peace during the extra difficult days, and that I would be a testimony to those around me of just what it means to be a child of His.

"There is a depth of intimacy with God that can only be known through suffering. There is a reliance on Him that can only be experienced when everything else around my soul seems to give way. And if that's what it takes to make this stubborn child cling to that old rugged cross, you can have your prosperity.

I'd rather have Jesus."

--Laura Story; What If Your Blessings Come Through Raindrops?

 

Last night, at the very last minute a sweet new friend of mine showed up with her husband. I met her at MOPS this semester, the Thursday before Aidan's surgery. She got up in front of the group and shared her story and asked for prayers. Long story short, her neurosurgeon is the same one that had and would be operating on my Aidan. I cried when I shared that with her. Throughout the week Aidan was inpatient, she visited, and I was given the great opportunity to meet her family, and be surrounded by the people in her small group from church. What hit me really hard was the day I was told the cancer was malignant; I literally fell apart. But amazingly all of these great people were there for her surgery that same day, and they surrounded me with love and prayers. I didn't even have to say anything. I recently bought this new friend a charm that represents what she's currently dealing with and had a mutual friend deliver it to her. Last night was the first night I had seen my friend since the day before her surgery. Again, at a loss for words. I wanted to tell her just how blessed I feel to have met her when I did, that literally just seeing her face brought me peace. I couldn't stop hugging her! (and of course, to talk myself down from just wanting to sob) Thank you friend, for the peace you give by just being there.

 

 

"Every experience God gives us, every person He puts into our lives, is the perfect preparation for a future only He can see."

--Corrie Ten Boom

 

 

 

Thank you God for the people, and the experiences you have put in my life.

-Courtney