"Let me get situated."

“Let me get situated.”

She says it with a little moan as she carefully shifts herself in her hospital bed.

It’s become one of our favorite EvanMarie-isms.

But when you stop and think about what she means, it quietly breaks your heart.

An IV in one arm. A blood pressure cuff squeezing the other. A central line in her chest. A heart monitor wrapped around her tiny toe. Sticky leads. Needles. Blankets. Wires. Pillows. Tubes. All this with the very intense nerve pain from the immunotherapy.

“Let me get situated.”

Yes, baby girl. You have a lot to get situated.

This week she completed her first round of dinutuximab, an extraordinary breakthrough in the treatment of high-risk neuroblastoma. We thank God for the parents who advocated, the researchers who persevered, the physicians who refused to quit, and the foundations that believed this day was possible. Because of them, children like EvanMarie have a treatment that simply didn’t exist a generation ago.

But this drug is a beast y’all.

For four consecutive days she endured ten-hour infusions that brought intense nerve pain as the medicine searched out and destroyed any remaining neuroblastoma cells. 

No three-year-old should have go through this. No three-year-old should have to learn the phrase, “Let me get situated.”

And yet, there she is. The bravest little girl I’ve ever known. 

She still smiles through her puffy face. She still makes us laugh with her questions. She still thanks her nurses. She still has wonderfully strong opinions about almost everything, especially our recommendations. She still shines brightly.

As a dad, every instinct in us wants to protect our children from pain. I would trade places with her in an instant without a second thought. Since I can’t, I simply sit beside her, help her get “situated,” and marvel at the courage God has placed inside this little girl.

Today, God willing, she gets to come home.

We’ll receive the homecoming with grateful hearts. There are still four rounds of immunotherapy ahead of us, but this week we’ll soak up the ordinary moments together, the laughter, the joy of friends, the sparkles, and yes… probably a few more strong opinions.

One day, by the grace of God, all of these wires and tubes will be gone. A memory.

And I have a feeling one day she’ll smile, stretch, and say with that same determined little voice,

“Okay… let me get situated.”

Only then, she’ll be talking about life. 

Thank you for continuing to pray for our brave little girl and for carrying our family through this long journey. We have felt the love of Christ through every prayer, every meal, every message, and every act of kindness.

Glory to God in all things.

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