Levi’s Story, God’s Glory

by Kayla Stark

Levi’s story changed the trajectory of our family’s life.

I grew up in Catholic family that valued traditions.
I knew God, but had no personal relationship with Him.

My husband and I married in 2013.
He didn’t grow up in church, so God was not our family’s foundation.

We coasted for six years.
We had good family and friends, good jobs, and a good life.

Then, in 2019, a friend asked my husband and I to do our first Bible study with a group of friends from high school. This was way out of our comfort zone, but we agreed to join.
We dug into God’s Word.
We built relationships. 
We were growing our faith.

We didn’t know that we soon be forced to rely on this faith
during challenges in our personal lives and, later, with Levi.

This became our family’s turning point. 
This is where we see God start preparing us. 
This is where we can trace our faith back to.
This is the start of God’s perfect timing in our lives.

On April 30, 2020, Levi was born. 
In March 2021, Alyssa Scales invited us to our first church service at Encounter.  
God knew we were about to need the people in our church more than ever. 

In April, we started noticing that Levi’s legs would randomly get really red. They looked as if he got a sunburn. 
We went to his pediatrician, but there didn’t seem to be a major concern. His bloodwork came back normal.

He had always had problems with textures, often gagging when he ate, but as things got worse, he began vomiting.  He would also wake up in the night from his sleep, screaming and throwing his head back.  These things, too, continued and became more frequent.

On June 13, 2021, Levi was not acting himself.  He was lethargic, and at times would stare off.
We were at a birthday party and several people noticed something wasn’t right. 

I am typically very indecisive and uncertain, but I knew this time something was wrong.
I know that God was pushing me and giving me the determination to seek immediate help.

We decided to bring him to an urgent care, and as soon as they saw his coloring, they sent us directly to the ER. 
Doctors at the emergency room said that it was just a virus and sent us home.
The next day, we went to our doctor for a follow-up and his bloodwork came back normal.

That Tuesday night, Levi woke up vomiting.
I knew something was wrong. 

We brought him to his pediatrician again on Wednesday morning,
and I told the doctor with certainty, Something is wrong.

Our doctor admitted him into the hospital for testing and they decided to keep him for “extreme constipation”. 
By Thursday night, Levi started having seizures. 
The first one was mild and unnoticeable, only his hands shook.

He had another, more obvious seizure, and I ran to get a nurse. 
They immediately brought him back for a CT scan.

At 10:30 that night, we were moved to the ICU.
The pediatrician contacted Texas Children’s, then came to give us the update. 
Levi had a tumor. 

The next several hours are a blur of moments I will never forget. 
I ran to the hallway looking for my mom and collapsed in the hallways.
I knew this was something I couldn’t control.
I just screamed and cried. 
I felt defeated.   
All I could do was rely on Him.

My mom picked me up and brought me back to our room. 
I sat and watched my baby on the hospital table. 

Then, his legs got suddenly stiff and straightened out.
His hands were straight out in front of him.
I watched as his numbers started dropping and he started seizing.
I heard our pediatrician, Call the code.

I’m not one to pray in front of people,
but I remember dropping next to his bed and screaming a prayer to God. 
I begged for him to put his hands on my baby.
To give cover and guide the doctors and nurses.
To fill the room with His presence. 
I pleaded for Him to keep my baby alive.

Levi continued to have seizures.
My aunt, who was on shift at the time, suggested that we leave the room so they could intubate him.
It felt like we sat for three hours, unsure of what was happening on the other side of the door.
Nurses and doctors poured in and out of his room.

An angel of a nurse, Lindsay Theriot, had heard them call the code and immediately came up to sit with me. 
She is also the one that connected the dots on who happened to be our nurse that night…

Sarah Halter was my nurse. Someone that had lived this very nightmare with her baby.
She had been moved from L&D to our floor for the night.
I know God arranged this.
Someone who knew.

By nearly 4:00 am, they finally got Levi ready for transport to Texas Children’s.
He had to be life flighted, and because his stats were so low, we would have to drive and meet him.
I remember in the middle of the blur, an EMT looked at me and said,
I’m going to get him there.

When we arrived, they rushed us up to a massive ICU room with bright lights and a tiny table.
My small boy laid in the center of the room, sedated and hooked up to what looked like a million different things.

Doctors came and told us that Levi had Hydrocephalus, pressure in his brain due to fluid. The tumor was not allowing the fluid in his brain to drain down his spine properly, causing pressure to build up in his head. They said that he would have surgery in the next few hours to put in a drain to alleviate the fluid build up and pressure. After five days, they would go back in and remove the tumor.

All of the time, Dusty was the strong one. He would tell me,
Kayla, look what God has done. 
He told you something was wrong. 
He made sure we were in the hospital when the seizures happened. 
He put us in the right place at the right time. 
God has lined all of this up for Levi’s good. 
We just have to have faith that he is going to be okay…

The same faith that started growing in 2019. 

He knew.
God knew we would need our faith to be strong.
God knew we would need people surrounding us...
so He worked and He moved.
He pushed us and prepared us.

With the drain, everything had to be in very specific places for us to even hold Levi.
Often, I would sit by his bed and play “God Turn It Around” over and over.
That’s exactly what God began doing.

Dr. Aldave, another angel on earth, told us that the tumor removal would be difficult.
He listed the risks and explained it would be at least a 12-hour surgery, likely requiring a second 8-hour surgery.

On June 23rd, Levi was brought back at 8:30.
Our family and friends sat with us as we waited, knowing we were in for a long day.
We received phone calls with updates:

10:00-Levi is sedated and they are getting started. 

11:00-He is doing well. No issues yet.

1:30-This is a tough tumor, so expect it to go late into tonight. 
He has already received one blood transfusion.

Shortly before 3:00-They’re done. They got most of it!

God’s timing.
Not ours. Not the doctors.
His mighty, miracle-working timing. 

We met with the doctor after they completed the follow-up MRI to check if anything remained. The doctor got all of it. He explained to us that the tumor was hard, but when he got to the part wrapped around Levi’s brain stem,
the most concerning, risky part, it just peeled off.
I think even Dr. Aldave was shocked. 

We were still scared of what the next several months would look like, but we knew God had us.
God invited us into a small group years earlier.
God planted us in a church and gave us community.
God pushed me to seek immediate help.
God put us in the hospital before Levi had seizures.
God placed angel nurses on shift while we were there.
God’s timeline was not one I could have created myself.
God’s timing was divine and perfect. 

A week later, we found out it was a Grade 3 Anaplastic Ependymoma, the most aggressive of that type of tumor. 
It was large, but had not spread into his body. He would only need radiation.

Levi was finally discharged after nearly 5 weeks in the hospital. 
We went back two days later for a check-up and because of Levi’s demeanor, we did a CT scan. Dr. Aldalve said our next best step was a permanent shunt to help the brain drain. Levi were admitted for another week to put in a shunt and central line for treatments. Then, we were able to go home for two weeks before radiation started. 

Once treatments started, we went to the hospital every day for six weeks.
We would check him in, then one of us would walk him to the Gantry Room. There, they sedated him through his central line while we held him and then we would walk him over and position him on the table, leaving him for his radiation. 

We were told there was a high chance he would be sick and tired. 
We were told to expect multiple blood transfusions during his weekly oncology appointment. 

Levi only vomited twice and had one transfusion. 
As soon as we got back to our housing in Houston, he played every single day.
Fighting cancer like a superhero.
Playing like a little boy.

Once the treatments were done, we went back to remove the central line and have a follow-up CT scan.
We were done!

We know that God did not do this to Levi.
God did intervene and work miracles. 
God did prepare and position us.
God did use it to grow us. 

Through it all, Dusty reminded me multiple times a week,
Look what God has done.
Look at how He prepared us.
Look at how He positioned us.

This would have all looked so different if God did not intersect our lives two years ago.
God put people in our lives to help prepare us.
God placed us where we would be prayed for.
God prepared us by growing our faith. 
Then, God helped us walk through the darkest valley. 

We will now have quarterly follow-up appointments. 
As time goes on, they will be less frequent. 
These appointments will happen for at least ten years.

We know that God will continue walking beside us.
We know that He will continue to grow us.
We know that He will continue to give us strength. 

Like Isaiah 41:10 says,
So do not fear, for I am with you;
    do not be dismayed, for I am your God.
I will strengthen you and help you;
    I will uphold you with my righteous right hand.

Every time I asked God to show me He was there, He did.  
He constantly showed us signs that He was there and working.

I remember our last morning of radiation.  Dusty and I were driving Levi to his final treatment. I was crying, tears of happiness and hope.  In the middle of my tears, “God Turn It Around” began playing on the radio.”
That’s exactly what He did.

God continues to remind me that He will bring purpose to our pain.
He will prepare and position us for whatever may come.
He will heal us and help us move forward in our faith.

This is Levi’s story, but his story has changed our lives forever. 
It will continue to be a journey, but we have no doubt that God is with us.

I want others to know that God is with them too.
I want people to know that God is your strength and your help.
I want people to know that God’s timing is good.
I want people to see how God is preparing them.
I want people to see Jesus.

I’m not sure how God wants to use me, but I know He will get all the glory from Levi’s story.