Our fight for a diagnosis

Written in August 2023 during Everett's radiation treatment.

This was one of the first times I shared the full story of how we got to Everett's diagnosis. Looking back now, some details and statistics have changed with time, but these words remain exactly as they were written in that season.

↔️ Follow your gut, Mama. It is there for a reason.

🤜🤛 Fight. Fight like hell for your child.

✝️ Trust. Trust God with all you've got, or even the tiniest bit you have to give.

When we heard the words, "Everett has a large brain tumor," our hearts sank, and I think I even blacked out for a minute. The next words I heard were, "He has a large amount of spinal fluid built up in his brain and needs an immediate surgery to let it drain." We were devastated, but I was relieved.

Relieved because someone finally looked further. This was the 7th doctor we had told our story to, the 3rd trip to the ER, which led to 2 admissions, and someone finally heard us. I thanked her. "Thank you for listening and for looking further. Thank you for finding this."

At age 2, on July 8, 2023, Everett was diagnosed with a large and invasive brain tumor called an Ependymoma. Here we are toward the end of August and on day 3 of radiation, but I need to backtrack because you haven't heard the story of what we went through to get here. I had to advocate like hell. Thankfully, my Mama was beside me advocating too.

Now let me backtrack, which may take a minute if you have the time.

On Thursday, June 29th, we noticed Everett wanted to lay around a bit that evening, but he seemed to feel okay. Friday morning at 3 a.m., he woke up vomiting. I took him to our local clinic that morning to be told it was a stomach bug. I told them I didn't think so because he had vomited and felt terrible 3 days in a row the previous week. Something isn't right here, and I knew it in my gut. He had a few random spells of vomiting that month as well. Something isn't right. I just know it.

On Saturday the 30th, everything got more intense. Everett, who is our sweet, into-everything-at-all-times little boy, was vomiting yet again, and he was extremely lethargic and in pain. We drove 2 hours to the Children's Hospital ER to be told he was dehydrated and constipated. They gave us fluids and an enema and sent us home. No matter what we said, they could not see past the X-ray showing constipation.

We went home in the wee hours of Sunday morning, and by Monday afternoon I took him back in because he was in terrible shape. We had a better doctor this time, and she ruled out all things GI-related after seeing the amount of pain he was in. She said, "We have ruled everything out, so it must be constipation."

We were admitted for a clean out with an NG tube through his nose. I still felt there had to be more here. How is all of this constipation, we wondered? I was uneasy, but everything was ruled out, and we were left with a constipation diagnosis.

Several days of pain and misery later, we were discharged yet again. This time with no stool left in his little system.

When we got home that Wednesday afternoon, I sat him on the couch, and I distinctly remember him grabbing his head. Later, I tried to stand him up, and he was super unsteady and couldn't balance or hardly stand. I thought it was due to not being able to eat or hold food down for an entire week and that he was just a bit weak.

Thursday rolled around, and we realized it would be a slow recovery back. He still only wanted to lay down, but he did eat a bit that day and even tried to get off the couch but couldn't. I moved him to a chair at the table, and he played for about 5 minutes and needed to lay back down.

That night he started vomiting again and complaining of stomach pain. He got sick several more times before daylight and was in pain and complaining about his head. I was on the phone with an on-call nurse before the sun was up, and she said it was a mystery because they had ruled everything out.

The day went by, and I was trying to decide if we should go back to the ER yet again. He had a bout of shrieking on and off, and one was so intense I said, "Let's go. It's time to go."

On the way to the hospital, he started acting strange in more ways than one. We got to the ER to be told yet again it was from previous constipation and that he was weak and his bowels were irritated and causing the vomiting.

They admitted us to give him fluids and keep an eye on him since he was getting better then worse and this was our 3rd time there. I kept on. There has to be more here. How can this possibly be constipation? By now I knew our story backwards.

The next morning our angel doctor came in, and she listened to everything we had to say. All the things I had said so many times before. She wanted to see him stand, and then she wanted a CT scan.

Hours later an order came in for him to not drink or eat, and our gut sank. Something was wrong.

We waited for the doctor for around an hour, and she came in to say she was sorry it took so long because she had some things to coordinate.

She then said, "Your son has a brain tumor."

I can't even say what all she said. I think I blacked out.

Then I cried and said thank you.

"Thank you for listening to me and looking further."

I then had to call my husband, who had the other kids, and break the news. We talked to her together on speakerphone.

So thankful my mom was by my side, just as she had been through all of it. She held my hand, and we took it second by second.

Minutes later we met with a neurosurgeon, and we were looking at a screen and seeing a large brain tumor as well as how much spinal fluid he had on his brain. We were told he needed surgery to release the pressure.

No time was wasted, and the surgery had begun.

Then it was time to fall apart, share the devastating news, and try to grasp all that was happening.

There are so many more details in between and so many answered prayers along the way that show God's amazing glory.

Monday morning, July 10th, he was taken back and had a gross total resection of an Ependymoma that measured 6.7 cm x 3.1 cm x 3.1 cm. She was very happy with the surgery and said they got 99% of the tumor out. There are still cells left behind on his left facial nerve, but she peeled them off the best she could and said she expected this, and we knew radiation would be needed.

One week later, we ended up needing a permanent shunt placed because his little body just wasn't draining enough spinal fluid on its own. This was surgery number 3. We also had a port placed that day, so maybe that was surgery number 4 or wrapped up with number 3. 🤷‍♀️

After 13 days in the hospital (this time around), we were released to go home for a bit.

There were so many more things to come. Relearning balance, walking, climbing. Coming back from being so thin. He lost so much weight it was heartbreaking to look at him.

There were so many more scans, more tests, so many uncertainties, so much pain already endured, and so much ahead of us. We have had so many praises, hallelujahs, and shed tears. So much hard, and so many variables that led to other uncertainties.

And trauma... I often replay things and realize I am absolutely traumatized from this. I'm so glad he probably won't remember most of it.

It is all so hard to recount, but if you have been following our journey, or would like to, you can find my detailed updates along the way in Pray for Everett.

I can't even think about what would have happened if we listened to all the doctors and didn't keep fighting that something was wrong.

It was a fight. All of it!

Even getting to radiation was a fight. A fight with insurance. I had to fight to make it work. But God opened a door for us, and we are where we need to be.

It has all been hard, but this (radiation) is a new and different level I thought I was ready for. Today is a hard day... harder than yesterday... possibly less hard than tomorrow.

But I can only do this one day. One day at a time.

We are here, and it is necessary.

There were cells left behind that have to be taken care of immediately. These types of tumors are notorious for coming back, so without radiation it's a guarantee. With radiation it's about a 25% chance it comes back.

We are looking at 33 radiation treatments, which is 5 days a week for 6.5 weeks.

We have 30 to go.

There are so many things that can come from radiation further down the road due to its location. We are doing Proton, which is safer, but still has so many possibilities.

Possible permanent hair loss, possible problems with his facial nerves, possible balance issues, possible memory problems, possible hearing problems, and so many other possibilities.

Our God is bigger than these possibilities, and we speak against these possibilities and claim health and wholeness over Everett.

He is a mighty child of God with work to be carried out and a testimony to share.

We believe in complete and miraculous healing over his whole body.

THIS VICTORY HAS ALREADY BEEN WON.

He will have a full and beautiful life.

We are a long way from home, and I am tired, but I keep moving forward... one day. One day at a time.

With my Mama by my side... still.

What a blessing.

As I fight for my child, she fights with me and for me. She follows her child and her grandchild, she fights for her child and grandchild, and she trusts God through it all.

Dad is in all of this with us too. He has the other 2 kids, and he is fighting to give them some sense of normal in the whirlwind we are in.

The kids... they fight too.

We all do.

We know just how precious his little life is and how strong of a fighter he is.

We are also finding out how strong we are made to be too.

Everett's story did not have the ending we ever thought possible. We will forever and always be missing our little T-Rex.

Everett is the reason T-Rex Strong: Everett's Light Shines On exists today.

It has grown into our mission to bring comfort, encouragement, practical support, and moments of joy to other families facing pediatric cancer....because we have been there.