The Story of Deven Jones, a 6-Year-Old Boy

by Tracy Rathe, Communications Coordinator
Nebraska Hospice and Palliative Care Partnership

Deven Jones was a typical six-year old boy. He loved video games and playing with his brother, sisters and cousins. He was healthy, except for asthma. But even that didn’t keep him from his favorite pastime: basketball. At age five, Deven began having headaches but a CT indicated nothing.

More than a year later, Deven went into the hospital for an upper vocal chord obstruction and was placed on a ventilator. Within a week he was diagnosed with Guillain-Barré Syndrome or GBS. GBS is a disorder of the nervous system caused by the body’s own defenses in response to an illness. Deven now had to learn to walk again as well as talk with a tracheotomy.

After starting physical and occupational therapy and within two months of his GBS diagnosis, Deven returned to school. Within weeks, however, the headaches were stronger and a CT scan revealed a brain tumor.

“We were told that day that it was a cancerous tumor,” said Caranita, Deven’s mother. Surgery to remove the tumor was done immediately.

“As the doctor was updating us right after the surgery, telling us that he wasn’t able to get all of the tumor and that Deven would be in a coma, Deven woke and said he wanted his mom, dad, and water,” said Caranita.

Deven’s dad, Keven Washington, added, “Before he went into surgery, Deven told us he’d be right back,” Keven said, “As soon as he heard my voice he gave me a thumbs up.”

Doctors thought the tumor was a small, quarter-size tumor but surgery revealed that it was triple that size, aggressive and had spread. Deven was able to go home just days after brain surgery, but was wheelchair-bound. He began chemotherapy and radiation as well as more physical and occupational therapy.

Deven completed treatments in June and had plans to return to school after the summer break. However, Deven’s legs soon became paralyzed and a CT scan and spinal tap indicated that the cancer was in his spinal fluid. His oncologist recommended hospice.

“I knew I wanted to take him home,” said Caranita. Before the family took Deven home, a local hospice provider came to the hospital to begin the process. A hospital bed was needed for the home.

“The hospice explained everything to us,” said Keven.

The family – including Deven’s brother and two sisters – had previously been scheduled to take a Make-A-Wish trip to Disney World but the hospice provider arranged to have the trip date moved up. By the time the family returned from Florida, Deven had lost the use of his hands.

“He couldn’t play his video games anymore,” said Deven’s dad. “He would ask me and his brother to play the games so he could watch. He just wanted to see us play.”

As a certified nursing assistant, Caranita was familiar with the dying process. Keven, however, relied on the hospice team to explain things as they were happening.

“Hospice was there in an amazing way. They responded whenever we needed them, right then and there. The nurse, Lori, kept us in good spirits. She kept us going. She would take his vitals late at night and on the weekends,” said Keven. “She made sure we were doing things right. She let us know how to detect when something was wrong and explained how certain parts of the body break down. They were there in a major way for me.”

Deven made a special connection with the hospice chaplain, sometimes wearing the chaplain’s glasses and placing his own red cowboy hat on the chaplain’s head.

“Deven told me, ‘Dad, I want to call my grandma and tell her I’m sorry that I’m dying.’  That was something Deven did on his own. He would call his grandma and just pray with her,” said Keven. “The night before he died, he called his mom and me into his room and wanted to pray with us. He said, ‘God, I’m asking you to be there for my mama and my dad. You already know me. My dad is Keven Washington.”

Deven’s seventh birthday was nearing. “Hospice advised me that I might want to throw him a birthday party early,” said Caranita. Nine days before his death, Deven had a party with more than 50 friends and family members – including the hospice team.

Caranita and Keven share their story because they want others to know all of their options, and because they believe Deven’s life had a purpose.