Emilio Nares was three years old the first time he went to Rady Children’s. He had just started preschool and had come down with something. At first, his parents, Richard and Diane, thought it was just a cold or the flu. Preschool exposes kids to all sorts of new germs, they thought. So they brought Emilio to his pediatrician and were sent home with the usual advice: take some children’s acetaminophen for the fever, get lots of rest, and drink a lot of fluids.
They did what the doctor ordered.
As soon as Emilio got better he was able to go back to preschool. Soon after he returned, he came down with another fever, only higher. They called the doctor who advised to keep him home from school and have him rest again. They gave him fluids and looked after him closely. When button-sized bruises showed up all over his little body, Richard and Diane rushed him to Rady Children’s Hospital.
It was mid-day as they sat in the waiting room, holding Emilio and nodding compassionately to the other parents of sick little ones. No matter how cheerful the decor or what Disney show was on, there would be no distraction from their concern. With Emilio’s temperature at 104, they knew they wouldn’t have to wait long.
Emilio was Richard and Diane’s only child. They had him in their early 40s. They had met and married later in life, tried for a couple of years, and finally had a beautiful boy with big brown eyes and light-brown hair.
When Emilio’s name was called, Richard and Diane walked through the emergency-room doors. The nurses and staff lit up when they saw Emilio’s sweet smile. His assigned nurse took Emilio’s vitals and kept him preoccupied and happy. Keeping Emilio’s spirits up was easy; he was delighted by conversation, especially if it involved bugs or trucks.
The nurse asked questions and looked over the bruises delicately. She answered Richard and Diane’s questions without giving away too much information before the doctor arrived. Emilio was given a private room. The doctor came in and asked more questions, then ordered extensive bloodwork.
The doctor and nurses knew the signs for childhood leukemia. Rady Children’s is the only hospital in San Diego County dedicated exclusively to pediatric healthcare and the region’s only designated pediatric trauma center. They had seen children with Emilio’s conditions before. They needed the bloodwork to confirm it.
The doctor and nurse revealed to Richard and Diane that Emilio had childhood acute lymphoblastic leukemia, a cancer of the blood and bone marrow. They sat stunned. “I will never forget that fear,” Richard recalls as he looks into the distance.
Childhood acute lymphoblastic leukemia is a cancer in which the bone marrow makes too many immature lymphocytes (infection- and disease-fighting white blood cells). This type of cancer usually gets worse quickly if it isn’t treated quickly, so Emilio was admitted right away. They spent the afternoon confirming the diagnosis with more testing and a painful bone-marrow biopsy. They wanted Emilio to start chemotherapy right away, so a skilled oncology nurse placed an IV line and Emilio was administered chemo that night. “As a parent, you feel totally helpless. You can’t take the fear or the pain away,” Richard remembers.
Emilio never went back to preschool. He fought leukemia for three years, but in the year 2000, he passed away after his sixth birthday.
Like many families with a child who has cancer, the Nares family practically lived at the hospital. Once given a round of chemotherapy, Emilio had to be in a germ-free environment to protect his vulnerable immune system. And many childhood cancers are aggressive and must be treated with equally aggressive chemotherapy. Many children live at Rady Children’s as they receive their treatment.
When this happens, the spacious hospital rooms are decorated so that the children can feel a sense of home. A warm comforter helps disguise the large hospital bed. Framed family pictures dot the open space, pulling focus from the ominous IV stand. Books and games sit in bookshelves. And the couch, covered with blankets and big enough to hold slumbering parents, sits underneath the large window overlooking the artificial garden play area.
The children who don’t live at the hospital will come in for a day, receive their chemo transfusions, and then go home to recover. While spending so much time in the hospital with Emilio, Richard and Diane noticed many of the families were taking public transportation to the hospital. Public transportation with a child undergoing chemo is risky from a germ standpoint.
Once Emilio passed away, Richard volunteered to give the families that had become his friends rides back and forth to their appointments at the hospital so they wouldn’t have to take public transportation. A fine artist by trade, Richard was working in downtown San Diego as a picture framer, and Diane went back to work as an executive in the wine industry. Richard began driving families back and forth in his dad’s old Buick during his lunch hours or before work. “I still wanted to be a part of it,” Richard says. “It helped fill the wound.”
News of Richard’s rides echoed in the oncology halls. Soon, there were too many families to fit into his sedan. There wasn’t enough time in the day to carry a full-time job and get the multiple families back and forth. He didn’t have the resources. Small details, like needing a carseat for a sibling, would bring his day to a halt.
So, Richard quickly became a grant writer. “I had no idea what I was doing at first,” and he wrote to multiple foundations for help. He needed money for a van and a driver. He wrote about the families struggling with the very basics of caring for a sick child. He had records of the miles, the families, and the appointments and told the foundations about his quest that was quietly becoming his dream. By 2005, he raised a little over $130,000, bought his first van, and the Emilio Nares Foundation was formed.