Hard Questions and Failed Test...

It's been almost a month since my last update on Coop's health progress.

If I'm honest, I've had a hard time writing lately. I almost deleted this blog all together (thanks to David, I did not). I think part of me wonders why people would want to continue to read this story. I'm tired of being in this story. Medical this, medical that, worry about this, worry about that... It's a bit exhausting.

I saw a saying, "When someone has cancer, so does everyone else around them." I am understanding how that can feel true. Part of me doesn't really want to talk or write about cancer. However, it still consumes the majority of our day to day lives so it's hard not to talk about it, especially when it's affecting someone I love so freakin much.

How does life ever feel "normal" again? Maybe it never will.

This past week we had our first failed test and now delay. We are currently halfway through what is called "Delayed Intensification" which is Phase 4 and what we've been told is the hardest physically to get through besides the month of induction. His neutrophil count was too low to move on to the second half of Phase 4. We were suppose to start that last Monday and now it is delayed until the end of this week (pending he passes his blood test on Thursday).

We have however successfully finished the steroids of this round!! (Wahoo!!) If you've been around for the full journey you understand that steroids for Copper equal crazy high blood sugars. So, we were a bit nervous starting them again but felt better educated and prepared to do what we needed with insulin if they skyrocketed again.

The first week of steroids, we only had to give him insulin on two of the days. The second week of steroids, nothing. Nada. If anything, his blood sugars were trending on the low side. Totally threw us and no explanation, except God. I write that to remember the wins!

The steroids still wreaked havoc on his body though. He had a hard time keeping food down, struggled with insomnia, slept all day, lost a lot of muscle in his legs again, lost the cute fuzzy hair he had grown in and overall just felt crappy. Multiple times he just looked so depressed and would say, "All I want is to just feel better."

A blessing from the failed test is he gets an extra week to recover. Which means he was able to attend a few end of school activities that he would've had to miss if he had passed. We took donuts to his class and they got to do recess together as a potential last good bye to 3rd grade. We were able to keep the tradition with a couple of his friends to do a special "boys lunch" that we've done at the end of every year since they were in Kinder. I am trying to soak in the fun while just underneath my skin the fear of him getting sick simmers. The consequence of him getting sick when his counts are this low are very scary. David and I keep reminding each other, he still needs to live. We still need to live.

I will say, the depth of conversations I've had with Cooper have been absolute gold. He is so wise. He's had to think and process things most 9 year olds don't.

One day we were driving in the car and out of the blue he says, "Mom, did you know that God made you exactly the way He wanted you to be?" I proudly smiled and answered, "Yes buddy I sure do know that!"

That was the end of that conversation.

A couple nights later again he says, "Mom, did you know that God made you exactly the way He wanted you to be?". This time it caught my attention. I paused, looked at him and responded, "I do know that, what do you think of that?"

"Well, it's a bit offensive. I mean, why would God want me to have cancer?"

Ouff....

There it is...

The question we all wrestle with and now my little boy is looking at me wanting to know WHY would God do this to him?

Instead I asked him another question, "Do you think God put the cancer in your body?"

"No... or Yes... or I don't know..." he responded, sounding conflicted.

I could feel from his answer that one was what he thought was the "right" answer and maybe the other answer was what he was wrestling with in his heart.

I took a deep breath. What do you say to your kid after that?!

"Well bud, that question right there is what so many people wrestle with, me included. It makes no sense why you would get cancer. It makes me sad and angry that you have to go through this. I wish so badly I could just take it instead of you. I don't have all the answers and I personally don't think that God was the one who put cancer IN your body. We live in a very broken world. All of our bodies are going to fail at some point. I don't yet know "the why" of your cancer story but I do believe that God knew that you would get cancer when he created you. God knew that you would have to fight this giant and so he created you specifically with strengths to get through this, he surrounded you with the people you need and He is right beside you each step of this process."

"Yeah, kinda like when he gave me that lymph node so that we could find out that I had cancer so quickly?"

Absolutely bud.

During hard times, it's so easy to blame God. It comes natural to get angry at Him, to question Him. I mean if He is big enough to heal, save and protect all of us why doesn't He? These questions seem to swirl in my heart so quickly at times...

Is God actually good?

Is He truly powerful enough to heal my son?

What about all the people He hasn't healed, did they not matter?

Why does He allow all of these bad things to happen?

God, where are you?

Why me?

Why my son?

Before, I guess I would've been afraid to admit these questions, these doubts. Like if I actually said them out loud that I would be banished from heaven for eternity for doubting. I don't want the wrath of God coming against me!

Walking this path, I have actually experienced the opposite. God is so big that He can handle my anger. He can handle my sadness and actually I think He appreciates when I question. My questioning and anger have brought me closer to God, or maybe just a more authentic relationship with Him. I know the devil wants to use these questions to plant a seed of doubt and separate me from God.

One of my friends at the very beginning of this told me, "Cooper is already healed, he is already whole and God has already saved him." It was a bit confusing in the moment (like how can she be so sure of the future?) yet as I reflect on it, no matter what happens in this lifetime she is right. Cooper is healed, he is whole, he is saved. Because of Jesus.

I love that Cooper can share those deep, questioning thoughts with me. I pray that he's not afraid to continue to bring his authentic self to God because when light is invited into the darkness, everything changes. My hope and prayer for him is that as his story unfolds, he feels and clearly see's God's hand at work. Even in the moments we get the "failed test", we can understand it's not a failure. God holds all the details. I hope he will remember what God did FOR him and not have the script written in his head of God doing this TO him.

If you made it this far, thank you. I guess I did have a lot to say.

Please stay in prayer for and with us:

Sweet Jesus,

You know all the details to Cooper's story, you are the author. Would you please surround and protect Cooper's body from any outside illness. Help his ANC to rebound to a safe number and strengthen his body for this next round of chemo drugs. Please let this medicine be affective and not damage his young body. I pray as he goes under anesthesia again that the surgery would be safe and successful. Be with Cooper's spirit, heart and mind as he continues to ponder and question. Bring your light into all of the dark spaces in each and every one of us. Make your way clear so we can follow you. Help David and I to stay connected so we can navigate decisions and next steps for Cooper's care and our family as one. I pray for Addy, Bria and Sadie that you would just love on them so tangibly and tenderly. Lord, please heal our sweet Coopie 100%. Let him experience full and complete recovery here on Earth. Give him a long and impactful life. In your precious, powerful, kind, loving, healing name we pray.... Amen

Much Love 🧡