In his mind, Chad Stevens was always a warrior.
He wanted to be a Marine and read up on war and battles. Soon after he was diagnosed with an advanced tumor that would take over the right side of his head, steal an eye and eventually jut out of his mouth by four inches and choke off his speech, he wrote in his journal a story about himself as a soldier in Iraq. His mother, Jackie, found the journal in his last moments and began to read the story out loud to her 14-year-old son, not knowing why.
In the story, Chad’s team is ambushed and his best friend is shot in the leg. He carries the friend across the desert but they only have five drops of water left.
“I don’t know how much further I can go,” Chad said to his friend Johnny.
“You can make it,” Johnny told him. “With God, all things are possible.”
“After those words of encouragement,” Jackie Stevens read, “Chad pushed on.”
Then she looked up at her son. “And my son was looking right at me,” Jackie said, choking back sobs. “And he left his body.”
“That’s when he left,” said his father, Robbie Stevens. “When she said, ‘Chad pushed on.’ ”
Chad’s courageous three-year fight against a relentless tumor came to an end July 19, and for the last six months or so the family was able to lean on Trinity Hospice for help after the tumor came back and was no longer responding to chemotherapy.
It is difficult to know how many children receive hospice care, the National Hospice and Palliative Care Organization said. The rate of death for children with complex medical conditions is declining but the organization estimated that on any given day there are 5,000 children with serious illness that are in the last six months of life that would benefit from pediatric hospice. That care focuses on meeting pain or other distress in the patient and tending to the emotional and spiritual needs of the patient and family, according to the group.
Just the thought of placing Chad on hospice bothered the family at first, Jackie said.
“I didn’t want to admit that my kid had to go on hospice because everyone knows what hospice means,” she said.
“Hospice to me used to be a death sentence until I experienced it with him, with a child,” Robbie said. “And it’s not.”
“It’s no different than nurses that bring babies into this world,” Jackie said. “These are nurses that help people pass on from this world. It’s gentle and it is loving, just like when they bring a newborn baby in.”
The family attitude was turned around by the people at Trinity Hospice and in particular by nurse Susan Holley. Jackie said when she first came to their home it was “like an angel walking in.”
Holley sat them down at the kitchen table and “she pretty much laid out what we were going to experience, how we were going to feel,” Robbie said.
“She said, ‘Okay, you’re going to feel this way, people are going to treat you this way. Chad is going to act this way.’ ”
Jackie wanted to provide all of the care to Chad herself and “she showed me how, (in a) very calm, gentle voice. And then if I needed her she would come at the drop of a hat.”
Mostly it was support. If there was a problem with Chad’s oxygen, one phone call and the truck was there, Robbie said. Everything was a phone call away, he said.
By all accounts, the one who handled it best was Chad himself.
“When people would try to feel sorry for him, he’d always look at them and say, ‘Wait, wait, you don’t know if you are going to be breathing in the next minute,’” Jackie said. “‘Don’t feel sorry for me. You’re not promised a breath no more than I am.’”
At times, the parent and child role seemed to be reversed, Robbie said.
“He ended up teaching me everything,” he said. “He was just special and he had a special calling in his life.”
That strength came through faith. He called his body his “Earthsuit” that was there merely to house his spirit. He cried just once after he got the terminal diagnosis and then only for a few seconds, Robbie said.
“He was worried for his brother and sister,” Jackie said about Ariel and Garrett.
“And us,” Robbie added.
When his mother began to crumble at the news, Chad looked at her calmly and said, “Mama, get it together,” Jackie said.
Chad saw in his treatment a mission to share his outlook, she said.
“Chad would tell me this all the time. ‘Mama, the reason we’re going back up to chemo clinic is there is somebody we have to talk to,’ ” Jackie said. “ ‘God is sending us there. Mama, if I wasn’t in this predicament we would never talk to these specific people.’ ”
But Chad always understood that from the beginning he was diagnosed with stage IV rhabdomyosarcoma and whatever time he had was a gift from God, Jackie said.
“He told us if it was his time, if he was 15, 14, 60, 50, when God was ready to take him he wanted to go,” she said.
While they are clearly proud of how their son faced the end, there is also still sadness.
“The pain is there,” Robbie said. “I’m not sitting here saying that you’re not going to feel the pain and hurt. We’re his parents. You get a gift. God gives you a child and you think, ‘I’ve got this child forever.’ ”
The family, though, feels strengthened by what Chad went through, Jackie said.
“We are a really close family,” she said. “We don’t take for granted the things we did before.”