How a community helped shoulder the weight of little Josiah’s cancer

On a spring day in 2018, not long after his son Josiah was diagnosed with cancer, Keithan arrived at the commons at Arkansas State University with a score to settle. Against cancer. 

His colleagues and students from ASU’s College of Engineering and Computer Science surrounded Keithan where he stood next to a concrete canoe. Someone handed him a sledgehammer.

“Hit it, Keithan!”

“Give it all you’ve got!”

The engineering students had created the concrete canoe for a regional competition to showcase their engineering and design skills. They’d taken concrete — a material that seemed too dense and too heavy to float — and made it buoyant and seaworthy.  A marvel, really.

Now these same students and their faculty advisors wanted to help take a weight off the shoulders of their beloved colleague.

The students promoted the canoe smash as “stress relief.” Anyone could take a swing in exchange for a donation. The money raised would help Keithan’s family as Josiah underwent cancer treatment at St. Jude Children’s Research Hospital.®

“Knowing that Keithan had a child who was a patient at St. Jude made me want to do, if possible, something to help them out,” engineering professor Jason Stewart said. “Because Keithan helps everybody out.”

This wasn’t the only place on the ASU campus where people were helping St. Jude families. A student group called Red Wolves for St. Jude raises money on campus throughout the year.

Little Josiah, then 2, had become the “why” behind so many acts of kindness.

Keithan swung the sledgehammer, and the concrete shattered. He felt a weight lift. 

Total shock

Josiah was born with neurofibromatosis type 1 (NF1), a genetic condition that predisposes him to tumor growth. 

In 2017, at just a year old, Josiah was already being monitored by his local hospital for an optic pathway glioma — a low-grade, slow-growing tumor along his optic nerve. Then, around February of the following year, Josiah developed gastrointestinal and urinary symptoms that led to a second discovery: a softball-sized tumor between his prostate and bladder.

“I was in total shock at that point. I think I just blanked out,” Josiah’s mom, Amanda, said. “Everything the doctor said after that, I don’t remember except that we were going to be referred to St. Jude.”

At St. Jude, doctors confirmed a diagnosis of embryonal rhabdomyosarcoma, a soft tissue cancer. Josiah was enrolled in RMS13, a St. Jude clinical trial that used risk-adapted therapy that included proton beam radiation therapy and/or surgery, in addition to chemotherapy, for treatment of patients with newly diagnosed rhabdomyosarcoma. The goal of risk-adapted therapy is to tailor the intensity of treatment based on the patient’s risk level. This approach aims to treat the cancer effectively while reducing late effects, the health problems that result from cancer or its treatment that can occur months or even years after treatment. 

During Josiah’s inpatient care, “everybody on the floor became family,” Amanda said. The “Happy Cart” came down the hospital hallways regularly, delivering a choice of toys to the kids’ rooms. Josiah loved the toy cars. Amanda loved the support that lessened the weight of her worries.

“Love you, Josiah!”

Keithan, an IT professional, maintains the computers for the engineering department at ASU. He works hard, even after hours. People depend on him.

“Everything happens digitally, and Keithan is the guy,” said Stewart, the engineering professor. “He keeps us all running.”

When Josiah went to St. Jude, “They told me, ‘Don’t worry about working,’” Keithan said. “’Just go take care of your son.’” 

Amanda, who works at the ASU library, and Keithan, who also works at a hardware store, were assured they’d still have their jobs after Josiah’s treatment.

“Once they told us that, a little weight lifted off,” Keithan said.

In their Arkansas hometown, people with packed schedules and their own children to shuttle to school made room in their cars for Josiah’s older siblings, Jakayla and Jamarius. They made room in their ovens for the hot meals they delivered to Keithan with reheating instructions. He wouldn’t need to cook for the family while Amanda was 70 miles away at St. Jude with Josiah. Another weight lifted.

The people in their community held fundraisers ─ for the family and for St. Jude. They prayed.

“There were times in the beginning when I felt like we were alone,” Amanda said. “But when we were in need, people showed that they actually cared.”

Amanda created a social page of updates about Josiah. Every post brought words of encouragement: 

“Way to go, strong boy.”

“He is always smiling!”

“Love you, Josiah!”

When Keithan could get to work, Stewart said, “You could see when maybe it was a little rougher, so you just try to be there the best you can and sometimes that just means listening. And Keithan is happy to listen and return that as well. He’s more than a colleague. He’s a friend.” 

Friends help carry the weight of your burdens.

Life-changing

Keithan had seen St. Jude TV commercials for years, but he never understood the impact of donations until Josiah got sick.

“My first time ever walking through the doors at St. Jude, it changed the whole aspect of life on me,” Keithan said.

“The team at St. Jude, they were on their p’s and q’s. They were there for us every step of the way from day one of being processed and treated, and they were a support system.”

Josiah completed his treatment for rhabdomyosarcoma in 2019.

“If we had received a bill for some of the treatments that he got at St. Jude, I don’t know how we would pay for it” Amanda said. 

Families never receive a bill from St. Jude for treatment, travel, housing or food.

So, Josiah’s family wants to give back. Lift the weight for other families.

They participate in the St. Jude Walk/Run on a team named after Josiah. They decorate their yard for Halloween as part of the Skeletons for St. Jude fundraiser. They volunteer to speak at events held by the Red Wolves for St. Jude.

Josiah celebrated his No More Chemo party at St. Jude in 2019 surrounded by his doctors and nurses. After Amanda posted the video to Josiah’s social page, their supporters celebrated with them:  

“This made my day! Sweet boy! Can I share this?”

“This just brought tears to my eyes.”

“My thanks to the professionals at St. Jude Children’s Research Hospital.”

Ongoing Care

Josiah receives ongoing care and checkups to screen for new cancers and to treat his optic pathway glioma. Due to his genetic condition, the team at St. Jude watches Josiah closely and may add screening for new tumor development. Detecting these new tumors early allows them to sometimes be treated before patients even have any symptoms.

Imaging for his optic pathway tumor identified yet another tumor, a plexiform neurofibroma, in Josiah’s cheek. This plexiform neurofibroma is also a slow-growing, low grade tumor, but in 2023 started to impact how Josiah was able to speak and chew food. Because of his neurofibromatosis, responsible for all his tumors, a targeted therapy is now available, and Josiah takes a MEK inhibitor, a drug that blocks cell signals to attempt to block the growth of cancer cells, and has specifically been very successful for patients with NF1. This drug targets the exact genetic pathway that isn’t working correctly in Josiah’s tumors due to NF1, but it leaves his healthy cells mostly alone, which gives it an advantage over chemotherapy.

Josiah, the Creator

Josiah is 8 years old now and in second grade. He loves to joke. He loves minding his little sister, Jenesis, making sure she stays out of trouble. He loves St. Jude and regularly asks his mom, “When do we get to go back?”

Most of all, he loves to build.

Josiah nabs every cardboard box to create a robot or a building. He absconds with Amanda’s blue painters’ tape to help with his creations.

“I joke with him, ‘Boy, you’re wasting my tape. That tape is not cheap,’” Amanda said. “But if he can think of something, he’s going to create it.”

Keithan sometimes brings Josiah to ASU to say hello to his colleagues.

“Josiah is very curious, inquisitive, and he likes to see what dad is involved with,” Stewart said.

“As a parent, you don’t know how things are going to turn out. So then seeing Josiah taller and taller as the years go by and they’re walking down the halls, and he’s asking more questions and increasing vocabulary and just maturing and growing up, it’s really been great to see.”

For Keithan, smashing the concrete canoe that spring day — and all the ways people at home and St. Jude continue to root for his family, “It’s emotional.”

When cancer struck and threatened their son’s life, their community handed them a sledgehammer, lifting the weight of their burden together.