In the Dark

It’s almost impossible to type an update when you feel so in the dark.  We still know nothing.  Even what we thought we knew for sure for months, we no longer know.  It’s a hard moment to live in.  If it wasn’t for the fact that we are basically living a normal life again, I think I’d be going crazy.  Not knowing any answers + living in a hospital would be far too much.  We still lead a life full of many medical appointments, but we get to go to work and school and sleep in our own beds at night.  Physical therapy and various other appointments have taken over our schedule in the way that baseball used to.  Thanks to my friend Missy, who cares and worries for my family and spends too much time brainstorming ways to help Mason get better, we now are able to get Mason physical therapy 4 days per week.  Missy  gave me some great ideas of local places that could help Mason and encouraged me to check into them knowing our struggle is that our 9-year-old misses acting like a kid.  He would give anything to run right now and be on the baseball field or basketball court. After numerous phone calls, I finally feel like we are on the fast track to getting him more help to get better faster.  Pray for self-motivation for Mason when it comes to physical therapy.  He’s been through so much, that sometimes he just feels tired of the fight and wants to give up.  Pray that we can positively, yet firmly encourage him.

This coming Monday, the 12th, will be 4 full weeks since we sat in Dr. Meyers’ office in New York.  That day we agreed to doing the genomic profiling to extract Mason’s DNA and find genetic mutations that would lead to answers on what we are really dealing with.  We were told that day that Dr. Meyers’ pathologist would have some kind of information for us by the end of the week, but that we shouldn’t expect any definitive results on the genomic profiling for 3-4 weeks.  On the morning of August 29th, 2 full weeks after the appointment and 10 full days after we were promised a phone call, I finally called Dr. Meyers.  That phone call rocked my world completely.  I lost it.  I cried for about a week and I even questioned God. While I learned nothing definitive from that phone call, what I did find out made me question our entire journey and every single decision we’ve made.  I am in tears as I type this and I’m not even sure how to explain to you how confused, betrayed, and defeated I feel.  Dr. Meyers apologized for not calling sooner and he said the reason he hadn’t is because he didn’t have any real information for us yet.  He went on to say that in all of the years that he’s worked with his pathologist, he’s never seen her quite so conflicted.  So conflicted that she is not willing to label any diagnosis until she has the genomic profiling back to fill in the missing puzzle pieces.  I asked him what he meant by conflicted – between two things or conflicted in general?  He said just two.  I told him I had to know what those two things are.  I had to know what we might be dealing with.  He said low grade osteosarcoma (same diagnosis as we were given back in January and have been treating all along) or….fibrous dysplasia (what Dr. Rosenthal was 99.9% sure we were dealing with prior to December’s open biopsy -NON MALIGNANT).  I can’t possibly put into words why this upsets me so.  I can’t even wrap my own head around it.  If you would have told me that they would come back with two possibilities and one was NOT EVEN CANCER, I would have told you I would be elated.  I assumed all this time that if it wasn’t osteosarcoma, it had to be something even worse.  But, here’s the deal.  If it has been fibrous dysplasia all along, then we have consented to methodically poisoning his body as well as mutilating it through horrific surgeries repeatedly.  The list of effects he will have for the rest of his life from all that we’ve done to him is far too long and honestly heart-breaking.  I immediately thought of all of those times when I had to sign papers for him to be admitted into the hospital and all of those times when Mason would plead with me telling me if I didn’t sign, we could just go.  We used to dream about the places we could go instead of the hospital.  The guilt I feel for my role in this will never ever go away.  I was given this child to protect and yet I put him in danger.  He was a perfectly healthy child up until that day he got cut in Kentucky.  And then there’s that.  We could easily call that first cut a miracle and give the glory to God for showing us he had these tumors inside his body that were trying to kill him.  It feels so different now.  It feels like we wish we had never found the tumors and we could possibly still be in the dark – ignorant and blissful.  I just don’t know what to think.  I do question why God would have us go through this.  I worry more than I pray.  But, I also know that God is good through it all.  It’s just harder for me to piece together now because I thought I had it figured out.  But, I am reminded that if I could figure out God’s plan in this, He wouldn’t be a very mighty God and I am grateful that He is.

So, to answer the questions that are piling up…nothing.  I know nothing.  I don’t even know what I thought I knew.  We may have had an entire event called a CANCER SMASH when we weren’t even fighting cancer.  It feels yucky and deceiving and terrifying all at once.  And, I still stink at waiting no matter how much longer I wait.  It never gets easier.  We’ve tried to balance out the bad with some good, because you can only live in the bad for so long without it really getting you down.  A friend showed up on our doorstep with Royal’s tickets in hand and we got to go to our very first game this season.  It was impossible to take for granted how good it felt being at Kauffman stadium after watching so many games in our hospital room.  We took it all in, the sounds, the smells, the happy people and expensive food that somehow tastes so good there.  We were reminded that it is one of our happy places and so grateful for the opportunity to be there even though they totally lost.  We also adopted a new dog.  We wanted a dog who loved people and would be a good lap dog for all of the time that Mason has to sit.  We totally found exactly that dog.  Louie loves us so well.  He has brought a lot of excitement into our world….good and bad.  We fight over him and he loves us all equally.  Jazz is perplexed by him and how much he enjoys us.  She thinks we’re all crazy.

Pray for solid answers that everyone can agree upon.  Pray that Louie can learn to sleep in his own bed without being destructive trying to get to his people.  Pray for speedy recovery for Mason and daily progress with physical therapy. #PrayforMason

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6 thoughts on “In the Dark

  1. Amy, you did what you had to do with the information you had been given. Please don’t second guess yourself or blame yourself, as it won’t do anything but make this hard situation more difficult. You are an incredible Mom to your kids, you’re Mama Bear. I am praying that God fills you with His peace, His perfect peace, and that you get the answers you need soon. God is a good God, a gracious God, a God who can handle our frustration, our doubt. He always wants what is best for His children, much like you want for Mason. Trust Him. Praying for you all.

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  2. Thank you for the update. So sorry you haven’t gotten a clearer picture of things. Beyond words. I pray that no matter what “they say” that this is the start of a new beginning. That Mason will begin to heal & life will get back to more of a “normal” for you all. I have no idea why you are on this road in your journey. But knowing our God, and his Word which is true, He will take what the enemy intended for bad & work it for your good & His glory. He has not left you & never will. Keep trusting in Him. Still praying.

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  3. Wish I could give you a hug & help you through this frustration & worry! As moms, we want to be fixers & tend to get down on ourselves at times. Just know you are a SUPER mom with a great hubby, two awesome kids, & a God that loves you all. Many prayers & love are coming your way!!

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  4. I would normally not ever respond to a blog post or make my thoughts public in anyway but I really feel like God put it on my heart to write a quick note. We have never met. My child is in Mason’s class so we have been praying daily like so many others since we heard. I read your post the day you posted it and have been thinking of it since. My heart is breaking for the terrible journey you’re on and I am so sorry. I hear the pain and sadness in your written words and I cannot blame you one bit. But the one thing I keep thinking is perhaps it was cancer and God touched it. Maybe you got the miracle we have all been praying so big for! Maybe it isn’t looking like one or the other because it isn’t like either because it was cancer and now isn’t. The only other thing I really wanted to say was that when bad things happen as you know, God always brings good from it. You’re so great to say that always! Please dont doubt the decisions you prayerfully made, as you never know what impact this journey has had on your daughter, you, your husband, and Mason. Perhaps some day he will be an oncologist or pediatrician or some other specialist whose title I can’t spell or pronounce correctly. Perhaps he (or your daughter) will be saving lives some day! Please don’t misunderstand what I’m trying to say. I’m not saying to lift your head and go on. I say feel it, let the tears come. Im sure you certainly did not want or intend to be an inspiration to others but you are. Thank you for reminding me to trust in God daily. We will see what the future holds and how these test come back but I really think Gods hand is in this. We will continue to pray big.

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  5. I’m continuing to pray for Mason, for you, for your family—every Wednesday is “Mason” prayer day in our home. Wherever this journey takes you, whatever you encounter, we’ll lift you up. This week I’ve prayed for wisdom, for clear direction, for peace in the storm.

    There’s a new song by Casting Crowns, “Oh My Soul.” (Ironically, the lyrics reflect the emotions of Mark Hall as he was diagnosed with kidney cancer.) If you’ll send me your email address, I’d like to purchase the entire CD download for you. I don’t know about you, but there have been times when I was too hurt, too scared, too numb to pray. In those times, certain songs became my anthem, expressing my faith in the face of emotions that were too big for me. Here are the lyrics:

    Oh, my soul

    Oh, how you worry
    Oh, how you’re weary, from fearing you lost control

    This was the one thing, you didn’t see coming
    And no one would blame you, though

    If you cried in private
    If you tried to hide it away, so no one knows
    No one will see, if you stop believing

    Oh, my soul

    You are not alone

    There’s a place where fear has to face the God you know

    One more day, He will make a way

    Let Him show you how, you can lay this down

    ‘Cause you’re not alone

    Here and now

    You can be honest
    I won’t try to promise that someday it all works out
    ‘Cause this is the valley

    And even now, He is breathing on your dry bones

    And there will be dancing
    There will be beauty where beauty was ash and stone
    This much I know

    I’m not strong enough, I can’t take anymore

    (You can lay it down, you can lay it down)

    And my shipwrecked faith will never get me to shore

    (You can lay it down, you can lay it down)

    Can He find me here
    Can He keep me from going under

    Oh, my soul

    You’re not alone

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