Georgia family finds 'purpose in the pain' after losing son at St. Jude

MACON, Georgia — Joshua Solomon couldn't stand purple Froot Loops. His mother would painstakingly fish them out when she prepared him a bowl of cereal for breakfast. Oh, but grits were his favorite! He liked the butter melted into a sunny puddle on top, so he could relish its silkiness; butter was not to be stirred in.

When you ask about Joshua, these are the kinds of details his parents Labrina and Trent Solomon share: the simple, even mundane moments they treasure more than a decade after losing their son to cancer.

They remember the way Joshua hummed and sang absent mindedly, while playing with his toy trains, especially the gospel hymns he learned in preschool.

This is the day…hmm hmm hmm…the Lord has made…. hmm hmm hmm… I will be glad…. hmm hmm hmm …and rejoice in it. Music rang inside and around him.

They remember how he felt an instant and deep connection to anyone he met. “Hello, my friend!” He would greet complete strangers that way. And when he went out to eat with his parents, he’d sidle up to the quiet couple at the next table over and chat with them about life and music, food and trains.

How they miss watching him work a room now. 

“The hurt and the heartache, they never go away,” Labrina said. “But you got to keep moving forward and find purpose in the pain.”

When they talk about what matters most to them, the Solomons tell you about serving family, faith and community. Their hometown of Macon sits smack in the center of the peach state and is nicknamed the “Heart of Georgia,” in part because civic pride and volunteerism run as deep and strong as the Ocmulgee River in the wetlands here. So deep, that over the last 12 years, the Solomons have spurred thousands of residents to join 5K runs and galas to support the mission of an institution nearly 500 miles away in Memphis.

Every year, the Solomons honor the pioneering work of St. Jude Children’s Research Hospital, which had tried determinedly but ultimately could not vanquish the tumor that took their little boy. St. Jude tried to save one of their own, so this community continues to raise tens of thousands of dollars for the brain tumor program, all in the hopes another family won’t have to face the same uncertainty and heartbreak the Solomons faced.    

When they think back to the year their life turned turbulent, the Solomons remember it beginning with such hope and promise. It was 2008 and it seemed increasingly likely the country would have its first Black president. On Labor Day Weekend that year they decided as a family to take a road trip to Alabama to visit the Birmingham Civil Rights Institute.

They loaded up into two vans with grandparents, aunts and uncles and embarked on the four-hour trip, laughing over funny family stories. Friendly needling needs sustenance, so they stopped for breakfast and Joshua ordered his favorite sausage biscuits just outside Anniston, Alabama, an hour shy of their ultimate destination.

Stomachs full, they were back on the road, eager to get to the place where they could see the actual jail cell door behind which Dr. Martin Luther King, Jr., wrote his famous letter praising the nonviolent demonstrators in Birmingham "for their sublime courage.”

But Joshua felt sick just minutes later. He threw up and complained of a tight pressure and pain in his neck. The family changed plans quickly and headed to the nearest emergency room. There, a CT scan showed something “suspicious,” so doctors suggested the family take an ambulance to Birmingham Children’s Hospital.

Labrina and Trent half-doubted what they were told. Their son looked to be back to his jovial self. In the hospital bathroom, he mischievously yanked on the string to call for medical help because it looked so much like the string to toot the horn on a steam engine, and he so longed to play with his toy trains.

Still, they erred on the side of caution.

They rode an ambulance into the big city, hopeful the suspicious scan that had doctors worried in Anniston, Alabama, would be easily managed in the hands of more seasoned pediatric specialists in Birmingham.

They would find no such relief. An MRI soon revealed Joshua had a tumor on his brain stem.

Ok, so they’d have to stay for surgery? Labrina asked. No, the doctors said, this type of tumor was inoperable.

This cancer stretched like a mesh across the pons, the part of the brain stem that controls actions like breathing and swallowing. It is fatal sometimes within months, but certainly within a couple years. Every year, about 300 children in the U.S., usually between the ages of 5 and 9, were diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG), and now Joshua was one of them. He had roughly 12 months to live.

“We were devastated,” Labrina said. “It hurt so bad that we didn’t tell our families what the exact prognosis was."

"We would look online to look up information about it and it would be so depressing,” she said. Her searches found words like “uniformly fatal.”

But her husband Trent encouraged her to focus on what they could control: his treatment and care for the few months Joshua had.

“We were trying to keep the faith and keep it together for Joshua,” Trent said. They were quickly referred to St. Jude and found themselves there within three weeks of his diagnosis.

Joshua received six weeks of chemotherapy and radiation at St. Jude. He responded surprisingly well and showed marked improvement in his energy and balance, all the things that had started to weaken as a result of the cancer. Joshua ended treatment on November 4, 2008, the day Barack Obama was elected president.

"We had such hope that day that change was going to come for Joshua as well," Labrina said. They returned to their Georgia home in time for Thanksgiving, full of relief and gratitude.

When they returned to St. Jude for a checkup in December, Joshua’s tumor had shrunk so dramatically it was barely visible. Labrina and Trent felt optimistic for the first time in months. Perhaps they’d beat the odds, after all.

As a special treat, Joshua and his parents were invited to New York City that December to ring the NASDAQ bell with Marlo Thomas, the National Outreach Director for St. Jude.  The 4-year-old was mesmerized by the rolling ticker tape with its blur of letters and numbers and equally stunned by the size of the gleaming mirrored buildings that stretched heavenward.

He ended 2008 in New York City and began 2009 on the Caribbean, sailing on a cruise to the Bahamas. It was an exciting time because Labrina was 5 months pregnant with another son by then and Joshua was eager to be a big brother.

But when they returned home after the trip, an intense fatigue swept over Joshua and Labrina noticed her son’s balance and handwriting were shaky. They came back to St. Jude in March, earlier than scheduled. The tumor had grown. This time the chemotherapy did nothing to stop its spread.

They returned home after the month-long treatment, making every effort to keep Joshua comfortable, and to prepare for the new baby. Their son Caleb was born July 14, 2009.

When the family brought the new baby home from the hospital, it was one of the last times the four of them were in a car together. Joshua sang “Happy Birthday” to Caleb even though by now his cancer had advanced and his speech slurred. He died exactly a month later.

Nothing prepares you for the physical weight of grief. It sits so thick, so stubbornly upon your chest, making it difficult to breathe, move, speak. It was hard not to recede into quiet and darkness but it was their newborn baby’s cry — clear and strong — that reminded them life continues. Caleb was proof of urgent, thriving life, even as they grappled with loss.

“This child was our comfort, Caleb was our joy and strength,” Labrina said. “Having to get up and take care of this baby when you can barely get up out of the bed that gave us something to focus on. When I looked at Caleb, I just knew that God didn’t leave us.”

“Mmm, hmm, yes,” Trent said, softly listening to his wife recall that difficult time. “Caleb helped us move forward.”

When she lingered and stared at Caleb as she changed his diaper or fed him, Labrina was surprised at how much he looked like Joshua. She found Joshua in the way Caleb’s mouth curled in the corners, and the joy that danced in his eyes when she sang. Sometimes, she slipped and called the baby Joshua.

As Trent and Labrina settled into a life with Caleb, they continued to research the cancer that took Joshua from them. DIPG. It sounded like the name of an oil and gas company. Who has this? What did they do?

In the months after losing Joshua, the guilt of whether she’d done enough to help Joshua weighed on Labrina.  She threw herself into research to find out more.

What she found surprised her: This type of childhood brain cancer is exceedingly rare and as a result there’s been little progress in research funding or treatment since the early 1960s when it first emerged into the public consciousness after astronaut Neil Armstrong’s daughter “Muffie” died from it. (He would name a crater on the moon after her.) Making it more difficult, a DIPG diagnosis often came in the late stages, and the location of the cancer in the brain stem made it impossible to surgically remove.

Labrina and Trent decided information and awareness would lessen the hurdles other DIPG families faced. She and Trent decided it was time to start a non-profit in Joshua’s name. Joshua liked to bring people together and they wanted to find a way to serve the community and shed light on obscure forms of childhood brain cancers. They would do both through a foundation they named Joshua’s Wish. It was established in January 2010, a month before Joshua would have turned 6.

Since its inception, Joshua’s Wish has focused on raising awareness and money for brain cancer research, and particularly DIPG. The organization has done so with a host of events before the COVID-19 pandemic, including silent auctions, dinner and dances on Joshua’s birthday every February and 5K walks and runs.

Over the last decade, Joshua’s Wish has raised more than $173,000 for the St. Jude brain tumor program, where some of the world’s leading scientists, biologists and doctors work together to develop treatment and search for cures by studying how both normal and harmful cells grow.

To encourage undergraduate college students to pursue a career in biomedical and brain cancer research, Joshua’s Wish also offers two $5,000 summer internship awards. The award is open to students from institutions across the United States and Canada. The foundation has given out 16 awards so far. 

Along the way, their fundraising events — even as they’ve turned virtual during the COVID-19 pandemic — have stitched together a community of supporters made up of church members, other families affected by childhood cancer and even local celebrities from Macon-area television news stations and beauty pageants.  

Labrina and Trent hadn’t anticipated that their loss could help grow community, but they say they feel Joshua’s hand in this.

“When I do this work, I see that Joshua’s life, short as it was, wasn’t in vain. It had purpose and it continues to give us purpose,” Labrina said.