DIPG

My brain told me Sophia was quietly slipping away, but my heart didn’t want to hear it

‘I didn’t count on loving her.’ Reporter tells story behind covering DIPG and Sophia Myers

Sun Herald reporter Margaret Baker tells how she first came to work on the investigation into DIPG, a rare and inoperable brain tumor, on the Coast and the surprises that she encountered.
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Sun Herald reporter Margaret Baker tells how she first came to work on the investigation into DIPG, a rare and inoperable brain tumor, on the Coast and the surprises that she encountered.

For whatever reason, I always thought I’d have another minute, another hour, another day with Sophia Ann Myers.

My brain told me Sophia was quietly slipping away those precious last days in October, but my heart wasn’t ready to hear it.

It’s been more than two months since that sassy, kind and compassionate little dancer, diva, princess, athlete, comedian and most importantly — friend — left with the angels.

And my heart still isn’t ready for it.

A deadly diagnosis

I first learned Sophia was suffering from a rare and deadly brain tumor called diffuse intrinsic pontine glioma, or DIPG, in a Facebook post by her mom, Angel Myers.

A friend of Sophia’s mom and her father, Josh Myers, had set up a GoFundMe account to raise money to help cover medical expenses for the 7-year-old so her parents could focus on the treatment and care for their only child.

When I read about the diagnosis, I reached out to Angel Myers to confirm what I was reading was true.

It was, and my heart sank for Sophia and for her parents because I already knew the love between Sophia and her parents was pure and deep and everlasting.

By then, I had already known Angel Myers for more than 10 years as a prosecuting attorney and child advocate in Jackson, George and Greene counties.

Because of our jobs, I had never been able to forge a personal friendship with Angel because I often wrote about the cases she and others in her office prosecuted.

Still, Angel and I had what I believe was a mutual respect for one another’s work and I think both of us knew deep down we could be close friends if our lives had taken different paths.

In the days and weeks after Sophia’s diagnosis, Angel would share more and more with me about the merciless cancer that was attacking her daughter’s brain — and the same cancer that had already taken Sophia Mohler, 8, and Jaxon Schoenberger, 6, from their Ocean Springs families years before.

“Something is not right,” Angel told me and the words kept ringing in my ears.

‘I knew I couldn’t walk away’

Angel wanted somebody to look into why so many children in a small geographic area in and around Ocean Springs had suffered from such a rare cancer and she chose me to do it.

At first, I wanted to walk away because I knew my heart.

I knew I would grow to love this child.

And I knew I would likely see her suffer.

I also knew we would likely lose Sophia.

And I knew there was nothing more disturbing and unsettling to me than the death of a child.

I had felt it only once before when I forged a friendship with a little girl in Louisiana who died after a battle with another deadly cancer.

I would soon hear Angel Myers say the words I’d heard from another mother so many years before.

“I hate cancer,” Angel said with the passion and pain only a parent faced with losing their child could understand.

I knew I couldn’t walk away from Sophia’s story.

And I knew it was important to at least try to find some answers for Angel and Josh Myers as well David and Theresa Mohler and Tyler and Salena Schoenberger, the parents of the other two children who died of DIPG in Ocean Springs.

I also knew my heart — and my heart was already in it.

Meeting Sophia

I met Sophia in February, four days after doctors confirmed her DIPG diagnosis at Batson E. Blair Children’s Hospital in Jackson.

We met at Ocean Springs Children’s Park, where a host of Sophia’s friends and family, local dignitaries and even a few Disney princesses gathered to welcome her home for a few days before her parents sought treatment elsewhere.

For some reason, I imagined meeting a little girl who was still energetic and able to frolic about the playground with friends.

I was so wrong.

Already weakened by the cancer, Sophia could no longer run or swing or dance around the grounds where she had spent so much of her childhood.

Instead, Sophia was sitting in a beach chair with a cover to protect her from the sun and blanket nestled around her to keep her warm as her friends and family gathered around her to celebrate her brief homecoming.

When Angel introduced me to Sophia, the shy and timid little 7-year-old offered me her sweet smile.

I had no idea then the impact this precious child and her family would soon have on my life.

But I would grow to love Sophia.

And over the course of her illness, Sophia would become one of the greatest blessings I’ve ever known.

Our time together

I started spending a lot of time with Sophia and her family when she returned from Atlanta after undergoing treatment there.

When I went by the first time, I came with a load of Starbucks cake pops because I knew they were a hit among the children in my own life.

Sophia was tickled by the gesture and the cake pops were a hit. (Though I did get in trouble a couple of times for bringing too many.)

In the months that followed, I was there as Sophia’s condition deteriorated and she lost one-by-one her abilities to walk, swallow and talk.

To see it was heartbreaking, but what struck me the most was the way Sophia made the best of whatever was happening to her at that time.

She still managed to offer a joke or a smile or a nod to let you know she was happy to see you.

I found myself looking forward to every visit I had with Sophia, and thankfully there were many.

I try to remember the better days, like the day Sophia asked me and her mom to sneak her a cake pop because Daddy said she had already had too many.

Of course, we snuck her the cake pop but as soon as her dad got home, Sophia told on us anyway.

The great thing about Sophia telling on one of us was the way she got a kick out of revealing the secret and laughed and laughed.

To see Sophia’s smile in the midst of her suffering was priceless.

Just as witnessing her faith in God despite her suffering was inspiring.

I have so many precious memories of my time with Sophia, but most of them I choose to keep close to my heart and cherish as my own.

She opened up her heart to me

But I will share a little bit about the first time I realized Sophia had opened her heart to me.

I had spent the morning at Sophia’s house one day early-on when she grew tired and weak and wanted to get some rest.

Angel had run out to pick up something Sophia needed, and I told Josh I would leave so he and Sophia could get rest without any disruptions.

Just as I got to the front door, Josh called out to me to say Sophia asked if I would lie down next to her and Josh while she slept.

I was honored to do so and stayed close to Sophia for a while as she rested.

When I left that day, my heart was full.

There were so many other special moments, like the times she used whatever strength she had in her arms and hands to dance and lip-sync to her favorite songs for us.

And then there was the first time Sophia told me she loved me as I went to leave one day, and the times she offered that Sophia smile when she could no longer speak.

For months, I’ve struggled to find the right words to celebrate my time with Sophia, but my heart just wouldn’t let me do it.

I knew the time had come to share some of my memories of Sophia this week as so many set off to celebrate the birth of Jesus Christ on Christmas, one of Sophia’s favorite holidays.

I ask that you remember Sophia and her family as they struggle to make it through their first Christmas without Sophia.

And I ask, just as Angel Myers has implored all of us to do, for each of you to cherish every moment you have with the ones you love the most.

Even I need to work on that.

As for you, Sophia, I want to thank you for being that blessing in my life.

And I want to thank you for reminding me that all of us are worthy of a love that is pure and unwavering and without judgment.

I miss you, Sophia.

May you forever run with the wind and lie softly on a cloud.

And may you dance and sing, sweet girl, and play and laugh on that great big stage beyond the sky.

Margaret Baker: 228-896-0538, @Margar45

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