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
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.
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.
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.
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.
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.
