EDMOND — Jaxon Saenz runs down the hallway of his home, excitedly showing off his colorful paintings.
He acts like any 4-year-old. His parents, Joey and Kacee Saenz, are both proud and scared.
Jaxon Saenz, 4, talks as his parents, Kacee and Joey Saenz, listen while Joey holds Jaxon’s sister, Shylee, who is 10 months old. PHOTO BY SARAH PHIPPS, THE OKLAHOMAN SARAH PHIPPS –
They warn the barefoot boy: “Don’t run. Son, be careful.”
The parents are worried because Jaxon’s liver, spleen and gall bladder are enlarged. He needs a liver transplant, and time is running out.
He has been waiting for a new liver for 10 months. No one knows how long it will take to find a match.
The Saenz family hopes it’s in time to save Jaxon’s life.
“There are ups and downs,” said Kacee Saenz. “It is so hard to watch him. We don’t know what life will bring us.”
As the days get long and the nights even longer, Jaxon has less energy and his tummy swells larger. He often climbs into his favorite tan leather recliner to play with an iPhone but soon falls asleep.
His sleep isn’t peaceful. He itches and digs at his skin. He talks and frequently wants his grandmother, Rhonda Penick. He calls her “Mimi” and Jaxon believes she makes things all better.
His mother sits on the floor beside the recliner, rubbing her son’s legs, hoping to take some of the pain away.
“Help,” the boy repeatedly asks while sleeping.
When they found out
Jaxon has noticed in the mirror that his eyes and skin are changing colors. He asks why there are red lines on his face.
“When he says those things, we just talk about something else or we try to make him laugh,” Kacee Saenz said. “You have to hold it together.”
Kacee and Joey Saenz’s second child, Shylee, was born five weeks early and stayed in the neonatal unit for 10 days before she was strong enough to go home.
Jaxon went with his mother and Shylee to her first doctor appointment.
The doctor looked at Jaxon and noticed something was wrong. Blood tests, ultrasounds and biopsies continued until he was diagnosed with cirrhosis of the liver on his father’s birthday, April 10.