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



Silent Auction/Benefit

Tomorrow night is our big fundraiser. I'm looking forward to seeing lots if familiar faces and being surrounded by people who love and support our family
Thank you Carl for putting it all together!

And it begins

This is just the first of many posts hopefully. I'm using this blog as a form of therapy for myself.

My son was recently diagnosed with brain cancer and after tumor resection surgery 4 weeks ago, he will once again go under the knife next week for his port placement. My poor, sweet 2 year old has cancer. No matter how many times I say it, it doesn't seem real. But then I'm slapped in the face with reality like how do I keep him and his sisters healthy during the next 60 weeks? And I'm immediately reminded of our situation. And I'm immediately brokenhearted again.

It doesn't seem fair. It doesn't make sense. How am I supposed to be this 'super mom' and somehow add on all the medical needs of a child with cancer? It feels like my world has literally been flipped upside down. I have good days, and I have bad days (bipolar much??), but I'm holding onto the fact that God has a greater purpose for my family and this trial is only going to strengthen us.

I will endure whatever is thrown my way, as long as I can glorify my God and be a testimony to those around me and those watching my family.

Psalm 46:10 ESV
"Be still, and know that I am God."

-Courtney