‘It was life changing for us.’ Family of 4-year-old cancer survivor supports research for the next family who needs it

Whether it’s swept back in a headband or fanned out of a tiny ponytail on top of his head, Bodhi McConnell’s white-blonde locks are one of his most striking features.

 

Everybody comments on his son’s hair, said Josh McConnell. “We've never cut it because it took forever for him to get hair.”

Because Bodhi is now a healthy “wild and crazy” 4-year-old, Josh said their friends often forget he was diagnosed with stage 3 neuroblastoma at 5 months old. A neuroblastoma is a rare type of cancerous tumor and the most common cancer found in babies. According to the American Cancer Society, there are about 700 to 800 new cases of neuroblastoma each year in the United States.

As soon as they found out, Josh and his wife Jen started researching the best children’s hospitals for cancer. “I didn’t know if we were going to Memphis for St. Jude, or maybe New York City or Los Angeles,” Josh said. “We were prepared to sell the house and move, but we didn’t have to because of MUSC.” 

MUSC Shawn Jenkins Children’s Hospital has consistently been ranked the No. 1 children’s hospital in South Carolina and one of the best in the nation by U.S. News & World Report. The hospital’s cancer program has also been ranked among the best in the country. Pediatric hematologist-oncologist Jacqueline Kraveka, DO, has guided Bodhi’s care since his first day at MUSC.

“She's an angel,” said Jen McConnell. “She's part of our family now.”

 

Kraveka not only treats children with cancer, she also actively researches new treatments for them. Only a few labs in South Carolina are dedicated to researching cancer in children; Kraveka says all of them are at MUSC. Kraveka’s lab is focused on finding more effective treatments for neuroblastoma, the same kind of tumor found in Bodhi’s stomach.

“We're very involved in clinical trials for children with neuroblastoma and are working on Food and Drug Administration (FDA) approval of a drug that's called DFMO,” Kraveka explained. A groundbreaking study, led at MUSC Children’s Health by Kraveka, found that DFMO increased the survival for children with high risk neuroblastoma.

“It’s great to have such awesome doctors who care, but to actually have the person who is researching your son's cancer at your bedside is just – I can't even put into words how amazing that is,” Jen said. Thankfully, Bodhi’s cancer did not require the most aggressive neuroblastoma treatments, which Kraveka said can include multiple rounds of chemotherapy, radiation, stem cell transplants, and immunotherapy.

 

Bodhi was declared cancer free March 29, 2018, after four rounds of chemotherapy.

The McConnells are grateful to Kraveka for saving Bodhi, and for all the generous people who have made her work possible over the years. “Without philanthropy the lab wouldn't exist,” Kraveka explained. “I certainly couldn't do what I'm doing. Philanthropy not only supports the lab itself, but it also supports a lot of the costs associated with clinical trials.”

Because of their experience, the McConnells know the breakthroughs happening now will be critical to saving the next child with cancer – whether it’s their own grandchild or someone they’ll never meet. Josh said donor-funded research changed the course of what otherwise might have been a long, difficult, and ultimately unsuccessful journey.

“We were a direct beneficiary of this,” he said. “It was life changing for us, but a blip on our radar because people said yes when asked to donate 10 to 20 years ago.”

Since then, supporting pediatric cancer research has become the family’s “North Star.” In 2020, they raised $27,000 for Kraveka’s lab. They set a $50,000 goal for 2021.

 

Kraveka is grateful to the McConnell family and all the donors who support her research. “I'm just so thankful for their generosity,” she said. “They're not only making a difference in South Carolina but nationwide. Every dollar – every penny – makes a difference.”