Ethen’s Story

The first part of this story was written by Jennifer Berry Hawes for The Post and Courier and reprinted here with express permission.  The second part was written by Todd Richardson.

By Jennifer Berry Hawes (Post & Courier) – January 11, 2013

Playing in the heat of school-free summer days, one of four kids in his family, Ethen Richardson’s headaches first blended in with the chaos.

But by mid-July of 2013, the 8-year-old felt nauseous. He vomited. When his mother, Brandy, made his favorite steak, he struggled to swallow it.

Yet he still played with his big brother Elijah. He helped with Emi-Sue, 2, and newly adopted 9-month-old Evan.

Sinus X-rays showed nothing abnormal.

His pediatrician referred him to a neurologist. Just in case. As the appointment dangled two weeks out, the words “brain tumor” seeped into Brandy’s mind, tugging at the fraying seams of her confidence that Ethen was fine.

The headaches continued.

….

By late July, Brandy was fed up. She loaded up all four kids and drove from their Mount Pleasant home to MUSC, where a doctor tried to send Ethen home with a diagnosis of migraines.

When Brandy refused to leave, the doctor ordered a CT scan.

Ethen’s father, Todd, was in Connecticut for training related to his job at Boeing.

He had settled in his hotel room when Brandy called.

The CT scan looked “abnormal.” Ethen would be admitted due to intra-cranial swelling.

Todd booked a flight home the next morning.

….

Overnight, a friend picked up the kids, except for Ethen, who underwent an MRI. As the sun rose that morning, a doctor stepped into Ethen’s seventh-floor room. “I need to talk to your mom,” she told Ethen.

It was July 26, a Friday.

Dr. Amy-Lee Bredlau, director of MUSC’s Pediatric Brain Tumor Program, led Brandy to a conference room. She shut the door behind them.

Brandy sat at the table, alone, listening to the words that couldn’t possibly be true.

Ethen had an aggressive tumor in his brainstem. It was inoperable. Incurable.

Bredlau mentioned hospice. “We’ll keep him comfortable.”

….

When Todd walked into Ethen’s seventh-floor room at MUSC later that day, Brandy lay in bed clutching their son, crying.

At 5 p.m., Bredlau led them both to the conference room, where she gave their new nightmare a name. Ethen had a diffuse intrinsic pontine glioma, a rare brainstem cancer.

The median survival is nine months after diagnosis.

As Todd listened, he grasped for ideas, for hope. Surely there was some kind of medication or surgery or ….

The doctor shook her head. “We’ll make everyone as comfortable as possible,” she repeated.

….

Todd had long learned Scripture.

He grew up in a family of deep faith, attending church multiple times a week and learning about all that God promises his faithful.

It never felt like much more than words to him.

But sitting in that dark hospital room with his son, fear spewing the darkest of thoughts, he felt a presence he had never known before.

His grandma and mom used to say, “There is nothing so bad you can’t call on God’s name. And he will deliver.”

It was like all those years growing up in church were training for this moment. In the darkness, Todd called God’s name.

….

Ethen heads home to start outpatient radiation.

Brandy, a mother of deep faith who stays home with their kids, who remains close with their long-time foster daughter, cannot even utter the tumor’s acronym: DIPG.

Todd starts researching.

He finds a clinical trial at St. Jude Children’s Research Hospital in Memphis that involves experimental chemotherapy drugs and radiation. An email back from St. Jude’s brain tumor coordinator says, “I’ll be praying for you.”

It’s a sign, a sense, a realization that hope – and faith – exist in this nightmare. Faith in God and modern medicine, that is how Ethen will be cured.

….

Brandy packs their van for an eight-week trip to St. Jude.

Eli and Evan will stay home with Todd’s mother. Brandy and Todd will travel to Memphis with Ethen and Emi-Sue.

The trip will mean missing Eli’s first day of fourth grade. It will mean missing his football games with the Mount Pleasant Recreation’s Cowboys. It will mean missing baby Evan’s daily growth and development.

But it also means having hope.

….

When they reach St. Jude, Ethen digs into his pocket to pull out change.

He holds it up to the receptionist. “I’d like to donate this money to the hospital,” he says.

In mid-August, he undergoes his first daily radiation treatment and begins taking daily chemo pills. Taking steroids, he blooms from 47 pounds to 62 pounds.

He scarfs down milkshakes, plays Legos and goes to baseball games. When the new school year starts, he heads to class at St. Jude wearing a new Plants vs. Zombies backpack.

But on Aug. 20, Ethen vomits after chemo.

….

Back in Mount Pleasant, the Cowboys dedicate their season to Ethen. He was supposed to play with them too.

Eli and Ethen have long fit together like sibling puzzles do. Ethen is a nurturer, a rule follower, the angel whispering over his adventurous brother’s shoulder.

“Ethen was put on Earth to help his brother get through life. Eli is the one who helps them get into trouble,” Brandy explains, grinning.

The Cowboys win their season opener.

….

Ethen vomits at night. In the morning, he huddles in a blanket on the couch of their apartment holding a bowl.

His parents surprise him with a trip home to see his brothers, to sleep in his own bed. They’ve been away for a month.

Ethen vomits during the drive, yet they make it. Brandy kisses her boys until her lips hurt. Eli and Ethen play Plants vs. Zombies late into the nights.

And Todd’s grandmother describes a dream she’s had.

In it, she always sees a river but cannot find a way to cross.

But this time, God led her by hand to the crossing. Now she feels so at peace, certain that God hears their prayers, certain that Ethen will be healed and grow into a man of God himself.

….

Ethen vomits constantly, day and night. He cries, but not due to his own suffering. He hates making his mom upset.

Getting chemo pills into him becomes an ordeal that stretches through the nights, often with Ethen in a bath, his parents pleading with him to take another. He takes a pill, vomits it up.

In early September, he throws up for two straight days. He has been on chemo for five weeks, and his body cannot take more. His doctors remove him from the drugs.

“A lot of our hope was bottled up into that,” Brandy says.

“Now it’s just radiation. And faith in God,” Todd says.

….

Ethen, however, leaves the hospital singing about a “no chemo holiday.”

Brandy and Todd see God’s hand in the chemo ending. What was Ethen’s quality of life?

A few weeks later, with radiation treatments about to end, Ethen’s doctor says he looks “perfect.” These tumors often wrap around the optic nerve, pulling on children’s eyes. But Ethen’s baby blues looked beautifully normal.

On Sept. 24, he leaves St. Jude.

At this point, mainstream medicine doesn’t have much more to offer his family.

Only their faith does.

….

A homecoming party welcomes Ethen.

He starts third grade and cheers at Eli’s games. The brothers share a room again, go to school, go to football, go fishing.

Yet, an uneasy feeling settles over Todd and Brandy.

What next?

They pour over homeopathic, experimental and non-conventional treatments.

….

Brandy has never looked at Ethen’s scans. She doesn’t want that image lodged into her faith and hopes for her son.

She doesn’t want Ethen to see them either. But when Ethen’s next MRI results come in, the clinical staff is so elated that he stays in the room with Todd for the announcement.

His tumor shrank 40 percent.

A celebration ensues.

Ethen wants his mom to look at his before-and-after scans, so she does.

It is clear that the tumor has shrunk. But it’s still there in her little boy’s brain. And it is not a peanut-sized thing.

The image clings to her hope, reminding her how sick Ethen really is.

….

For weeks, he continues vomiting.

Just before Thanksgiving he tells Brandy what he wants for Christmas. “I want to wake up Christmas morning and feel good again.”

….

His wish comes true.

On Christmas, he opens presents and joins Eli to play with neighborhood friends. It’s a gift to everyone.

His parents also have big news. The Make-A-Wish Foundation is making Ethen’s dream come true. Just before New Year’s Eve, they fly to New York City.

He’s always wanted to see that place of pizza and skyscrapers and Central Park and Rockefeller Center. He tours them all, followed by a Fox News crew because the Richardsons are about to appear live on its New Year’s Eve coverage.

Brandy prays that Ethen will feel well for the interview. She prays for no live TV meltdowns.

That night, late, they head into the cold for their moment.

“Hey, New York,” Ethen calls shyly to the Times Square crowd. Just out of the live shot, Emi-Sue and Evan cry from their stroller.

Host Elisabeth Hasselbeck asks his favorite part of the trip.

“Everything’s pretty much amazing. I can’t really decide!” Ethen says, his nose Rudolph red from the cold.

Back in a warm hotel room, they watch the ball drop. Confetti rains over their window.

….

It has been a great trip. But now the high temperature is 17, snow threatens and they just want to get home. Their flight is canceled.

The next day, they endure airport lines with four little kids.

And Ethen has a headache.

He started having them in New York but didn’t want to upset his mom.

They landed in Charleston on Jan. 4, but their luggage – with Ethen’s essential oils and other natural remedies – is lost. Their car has a flat tire.

Todd remembers the last time so many irritations nearly made him lose his cool. It was right before Ethen’s last scan, which brought great news.

His next scan is in a little more than a week.

The tire has a little air left, so they’ll drive to a nearby service station. If the compressor is out of order, Todd says, it’s a sign.

Sure enough, the machine is wrapped in tape, broken.

“Great news is coming because Satan is trying to stop us,” he tells Brandy.

….

Ethen’s headaches continue. He turns emotional. Brandy struggles to eat and sleep.

They leave for St. Jude today. Ethen’s next MRI is Tuesday.

Brandy won’t look this time, because regardless of what it shows, they will continue to fight for Ethen’s life.

And they will continue to pray – for Ethen’s healing, for their own strength, for God’s constant presence in the darkness.

That is how Ethen will be cured.

The Rest of the Story ……..

By Todd Richardson

On the flight home from NYC, Ethen said those dreaded words- “I have a headache”.

Brandy feared the worst but tried to somehow believe it might be sinus related from the unseasonable cold of New York or the pressure from the airplane cabin.

Ethen had his bouts of nausea and vomiting for the next few weeks.

….

One day, the school nurse called and said Ethen was crying uncontrollably.

Brandy would take Ethen to school and let him stay a few hours a day when he felt well. School was Ethen’s thing. He loved it.

When Brandy got to the school Ethen explained to her that the class was going over some things he didn’t understand and it made him sad.

He always excelled in academics and this was his first year in the gifted program.

When Brandy got Ethen home she looked in his book bag and found a progress report.

All A’s, and Ethen was still upset that he was a little behind………

….

Days passed – some good, some bad.

On Jan 23, 2014 Ethen felt great. He stayed at school all day and ran sprints during PE.

That night Ethen woke up feeling sick and started throwing up. Nothing new, or so Brandy and Todd thought.

Overnight the sickness became worse.

A stomach bug was going around and some family members had contracted it. This must be what Ethen has, they thought as the sun was starting to rise on a sleepless night.

Todd got ready for work and Brandy tried to comfort Ethen.

Shortly before 7am Brandy came downstairs and said to Todd “Please don’t go to work, something is wrong….”

A few minutes later Ethen was not able to talk clearly and standing was a problem.

Todd dialed 911, and explained that Ethen had a brain tumor and needed transport to MUSC as soon as possible.

….

By the time the ambulance reached the E.R., Ethen was non –responsive and his heart-rate soared.

Todd listened as Doctors said that this looked to be a bleed from the tumor.

They were afraid to put a breathing tube in before Brandy arrived because they wanted for her to be able to say goodbye.

….

That day God did not call Ethen home. There was more work here for him.

Candlelight vigils were held outside Ethen’s room and thousands across the globe lit their own candles.

Texts came in from Elisabeth Hasselbeck- quoting scripture and encouraging Ethen.

Ethen lay in ICU 10 days later and the Doctors at St. Jude and MUSC agreed that it was time to take him off artificial breathing. They did not expect for him to live more than a few hours or at most, a few days.

Big Brother, Eli, came to visit and had to tell Brandy and Todd that- “It’s OK, Ethen will decide if he wants to go home with us, or go home and be with God.”

The tube came out and the nurses cleaned Ethen’s little angelic face.

The presence of the Holy Spirit descended on the room and everyone that visited felt the warm blanket of calm in the room and commented on it.

“Wow“, one person said—“I’ve never felt that in my life. It’s like being in the room with an Angel.”

He was an Angel.

….

As days passed Ethen was moved out of ICU into the biggest room of the hospital. A doctor’s suite with a panoramic view of the Holy City.

Well-wishers came; Physical therapists volunteered their time, and even sang Elvis songs as Ethen lay in bed.

Ethen along the line developed a staph infection and pneumonia.

The Doctors were reluctant to treat the conditions, but Brandy and Todd insisted.

Ethen fought and fought.

People would come and tell the family how Ethen’s story had led them to Christ, made them better parents, or just prompted them to do good deeds.

….

Eventually, Ethen went home under hospice care.

The first night at home, Ethen’s heart rate dropped back to near normal and he rested peacefully.

Soon he began to communicate through blinks and eventually could move his arms on command. He also cried.

So many came to see Ethen at home and wish him well. Some cried, some prayed, all of them loved this little man.

Brandy never left his side. She fought every step of the way for her baby.

….

On May the 6th, Ethen was not responsive and his heart rate was rising.

Overnight his heart rate soared and by morning it was evident that God needed Ethen back home.

The Spirit engulfed the room again.

Brandy, Todd, Eli, and friends of the family were there as God lifted Ethen to his eternal home in Heaven.

All along they prayed for a miracle.

The miracle happened.

It was Ethen.