‘The truth of it is that we’re grieving a child that’s living’
Angel Myers is lying beside her daughter, longing for the healthy little girl she used to be.
She wants “my Bug” back.
The little girl who accessorized her princess gowns with sparkly necklaces for fashion shows in the living room.
The caped and masked Ninja child who snuck over to crank up the thermostat because Daddy, Josh Myers, had it so cold in the house, Mommy was freezing.
And the quick-witted first-grader with a dash of pink color in her hair as she skipped off to first-grade class at Oak Park Elementary.
She’s mourning the loss of that 7-year-old as her child’s breath rasps.
“I have to believe that we are going to have a miracle,” Angel Myers said in June of their only child, Sophia Ann Myers. “I’m going to believe that it is not terminal either. I’m going to believe ... that this will be the drug, that she will be the one that will be a breakthrough.”
In February, doctors diagnosed Sophia with diffuse intrinsic pontine glioma, or DIPG. The rare, inoperable and deadly tumor forms on the base of the brain and spreads like sand.
Sophia only knows she hurts because of what she calls “that stupid tumor” in her head. She’s never been told that she has cancer or that she’s going to die from it.
Her diagnosis came shortly after her Ocean Springs pediatrician, Dr. Van Wurm, ordered an MRI to see if something was the cause of Sophia’s inexplicable vomiting and wobbly attempts to walk.
“Something just seemed a little off,” Angel Myers said. “Looking back, I can see other things. I can remember her telling me while she was trying to eat some soup the week of her flu, that her hand was numb, but ... Sophia was a little drama queen and sometimes it was hard to know what was going on.”
Her parents have so many questions they want answered.
They want to know why three Ocean Springs children, Sophia included, have suffered from the same rare and terminal cancer, and they want more funding for pediatric cancer research and more.
Josh Myers’ voice cracks and his eyes swell with tears when he remembers the day he learned his little athlete and dancer might not live another year.
“When they told us what was happening, it was the worst day of my life,” he said. “I’ve heard ‘she is going to die’ so many times … I don’t want to hear it anymore. I want to focus on today. Sophia is still here.”
What do you do
After Sophia’s diagnosis, so began her parent’s search for the best treatment facility, the best doctor and best clinical trial drug to help Sophia live.
They went to oncologists at top hospitals in Jackson, Boston and Atlanta before they decided on treatment at Emory Hospital in Georgia.
They rely on faith to guide them, but decisions have to be made quickly because the cancer is aggressive.
The first of many scary and painful procedures began for Sophia soon after her diagnosis.
She cried out for her parents when a hot mold was poured over her face to make the mesh mask that was strapped over her head for weeks and weeks of radiation therapy.
I hate cancer. I hate it. I hate steroids. I hate what they have done to my child. I hate what has become of her life, our lives — existing minute by minute on a roller coaster that is so fast and violent and unexpected, just functioning not living.
Child specialists taught her how to swallow her medicine to try to combat the symptoms and fight the cancer.
Steroids have become part of daily life and a medicine her mother describes as “a necessary evil” in the fight against DIPG.
The steroids help relieve the pressure building in Sophia’s brain. But the steroids also cause an insatiable hunger that swell Sophia’s tiny frame and prompt fierce and unexpected rages in Sophia unlike anything her parents had ever known.
Without warning, Sophia kicks and punches, scratches and screams and thrashes about. Her parents try to restrain her to keep her from harming herself or anyone else.
“I hate cancer,” Angel Myers says with the passion of a parent who fears for her child. “I hate it. I hate steroids. I hate what they have done to my child. I hate what has become of her life, our lives — existing minute by minute on a roller coaster that is so fast and violent and unexpected, just functioning not living.”
‘My life is so hard’
Since the diagnosis, every day is a struggle and a blessing for Sophia.
As her cancer progresses, she wakes long before dusk, usually around 4 a.m.
“The first thing she wants to do is eat, so I try to keep her in bed until 6,” Angel Myers said.
When she sleeps, she rests, but is never restful.
“My back hurts,” she tells her mom, her little voice struggling to get out each word.
Her mom and dad shuffle pillows and foam wedges behind her back.
“My back,” she still whimpers, a soft cry in her voice.
“What can I do?” her mom asks. “What do you need? How can I help?”
“What is it Sophia?” her dad pleads.
The shuffling of the pillows and the wedges begins anew.
I want the world to know how special she is. She is tough. She is strong. I could never do all the things she has had to do with the grace she has done it.
“I love you, Bug,” her mom says.
“I … love … you,” Sophia says, a breath between each word.
Sophia wakes, breaks a smile and tells a joke.
“How do you make a tissue dance?” she says, then laughs and answers, “Put a little boogie in it.”
Sophia’s parents will do anything to alleviate their daughter’s pain.
Tucked away in a corner in the garage is Sophia’s new bicycle and scooter and other outdoor toys she may never get a chance to master. Her parents moved them so Sophia wouldn’t see them and be sad.
She shares her excitement about her dance recital and the fun she believes she’ll have.
“Dad, I have six dances this year in the recital,” Sophia says.
“I can’t tell her it’s already passed,” her dad says. “I just can’t do that. She is so excited. We can’t take that excitement away from her.”
‘Will I ever hold her child?’
As the disease presses forward, Sophia can no longer walk.
Her body is stiff and numb and her beautiful face is drooping.
Every day, she loses a little bit more of her independence, but her mind is intact.
She can no longer feed herself.
She is struggling.
She is frustrated.
She tries to tell her parents what she needs.
She cries when she looks in a mirror because she thinks she doesn’t have that beautiful Sophia smile anymore.
She cries because she can’t fit in the clothes she used to wear.
“My life is so hard,” she says.
I’ve heard ‘she is going to die’ so many times … I don’t want to hear it anymore. I want to focus on today. Sophia is still here.
Her parents know it is but feel helpless.
They slip into another room, or a corner or wherever they can find for a moment alone to shed tears so their daughter won’t see their grief.
They are mourning the part of their child they have already lost.
No more is the little athlete who joins dad for a run, or hits a soccer field with teammates for another fierce match among friends.
Gone is the girl who throws on her favorite princess gown before she shows her mom how she can “work it” with a strut in her walk, a wave for her fans and a confident nod for the judges during their annual viewing of the Miss Mississippi pageant.
“She’s my only child,” her mother says, quietly weeping as she pauses to speak the words. “You know, I do think, ‘Will I ever hold her child?’ You know, ‘Will I ever know the joy of being a grandparent or (see her go to) college or be waiting up for her to come home from a date?’”
Her parents are scared, yet they are thankful for the prayers and the emotional and financial support friends, family and strangers have offered them and Sophia.
And they are thankful for the gift of another day with their daughter who still cuddles them and still laughs and prays and dreams of a day when she will be well again.
When her parents found out there is nothing more doctors can do for Sophia, they made the painful decision to start weaning her off all medications with the exceptions of those that provide comfort from pain.
Angel Myers calls the cancer that is attacking her child “a monster” that is is “merciless.”
“The reality of it is, I wouldn’t wish this on anybody,” her mother says. “I really don’t want anybody to ever know what it is like. I wouldn’t wish this on anyone, I wouldn’t wish this on the devil.”
What her parents want most is for people to pray for Sophia and remember her long after the news about her illness fades.
“She is amazing,” her mom says through her tears. “I want the world to know how special she is. She is tough. She is strong. I could never do all the things she has had to do with the grace she has done it.”
Her daddy’s heart crumbles when he thinks about what’s happening to his child.
“I can’t imagine life without my kid,” he says. “Like I don’t even want to think six months out. I want to put everything into what I have now with her because, honestly, I don’t want to be around if she is not here.”
When Sophia is asked what she wants most, she has but one request: “I don’t want Mommy and Daddy upset.”