Riding with Emilio -- Cover Story San Diego Reader
Fear lingers in the waiting room of Rady Children’s Hospital-San Diego like morning fog. Parents sit wide-eyed, praying quietly as they listen for their child’s name to be called. Nurses in bright scrubs trade off, opening the heavy doors to call the next sick child in as families huddle together, hoping that they’re next.
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 simple cold or the flu. Preschool exposes kids to all sorts of new germs so they did what most new preschool parents do, brought Emilio to his pediatrician and were sent home with the usual remedies to 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 her returned, he came down with another fever, only this time, it was higher. They called the doctor and was 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 Emergency Care Center.
It was mid-day as they sat in the waiting room, holding Emilio and nodding compassionately to the other parents, mirroring their despair. No matter how cheerful the décor, 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, their only son, their baby. They had him in their early 40’s. They had met and married later in life, tried for a couple of years, and finally had a beautiful boy, energized with joyful curiosity, tender and naturally kind, with big brown eyes and light-brown hair.
When Emilio’s name was called, Richard and Diane walked innocently through the ER 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 revolved around 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 regions only designated pediatric trauma center so they had seen children with Emilio’s conditions before. They needed the bloodwork to confirm it.
According to the American Cancer Society, early signs of childhood cancer include fatigue, weakness, feeling cold, feeling dizzy, headaches, shortness of breath, infections, fever, bruising, bone or joint pain, loss of appetite, swelling of the belly, face or arms, swollen lymph nodes, bleeding gums, and a skin rash.
Emilio had the resistant fever and the bruising.
Childhood acute lymphoblastic leukemia is a cancer in which the bone marrow makes too many immature lymphocytes (an infection and disease fighting white blood cells). This type of cancer usually gets worse quickly if it isn’t treated quickly. The bloodwork confirmed this was the reason for Emilio’s fevers and bruising.
As the doctor and nurse revealed to Richard and Diane that Emilio had Childhood Acute Lymphoblastic Leukemia, a cancer of the blood and bone marrow, Richard and Diane sat stunned, their lives permanently altered with just a few spoken words. “I will never forget that fear,” Richard recalls as he looks into the distance.
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 chemo therapy right away so a skilled oncology nurse placed a 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 his heroic battle against his leukemia for three years. 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 your son or daughter is given a round of chemo therapy, they have to be in a germ-free environment to protect their vulnerable immune system. And many childhood cancers are aggressive, with cancer cells dividing quickly, so the cancers have to be treated with equally aggressive chemo-therapy. 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 hanging robotic stand. Books and games sit in bookshelves. And the couch covered with blankets, built large enough to hold slumbering, exhausted parents, sits underneath the large window overlooking the artificial garden play area.
For the children who don’t live at the hospital, they 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. While necessary and acceptable under normal circumstances, taking public transportation with a child undergoing chemo is incredibly risky.
Once Emilio passed away, Richard volunteered to give the families, that had now 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 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. I wanted to make these families lives better,” Richard says. Helping these families, experiencing the same battle they did, honored Emilio. “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 car-seat for a sibling, would put his carefully laid out day to a halt.
He had to come up with a plan.
Richard quickly became a grant writer, “I had no idea what I was doing at first,” and 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. That year, he raised a little over 130k, bought his first van, and the grass roots Emilio Nares Foundation was formed.
“Not only is it an emotional crisis for entire families, but it is a financial crisis for lower income families. I want to do more,” Richard mentions with sincerity. The nurses and staff say Richard and Diane and everyone who works for the foundation, is a part of their family. “It’s vital that we all work together. The social workers are key. There are a lot of logistics to work out,” he says. “There’s a lot of work to be done,” he smiles, still hopeful.
In 2016, with three vans, the Emilio Nares Foundation brought over 180 children in San Diego County and Imperial Valley to their appointments at Rady Children’s. Over 2200 appointments were met. Over 4000 trips were made, and the vans drove a combined 106,000 miles. Most importantly, each family and cancer warrior had a clean vehicle they could rely on. As Richard looks out to the parking lot and sees one of his vans waiting for a patient, he says softly, “We’re here to make these families lives better.”
Richard and Diane aren’t the only parents who wanted to give back. Many of the hospital’s unsung heroes have chosen to give back to the place that gave so much, during the most harrowing time of their lives. Many “employees” started as parents simply volunteering at first, and then grew their jobs into becoming “parent liaisons.” These parent liaisons were such a key part of the collective care team, and were so helpful and beneficial, that they were hired full-time.
After given a diagnosis, there are so many unanswered questions. Families reach for answers that the doctors and nurses won’t be able to give until they see how their child responds to the chemo or the procedure. That takes time. In the meantime, families search for reassurance, strength, guidance, and hope. Some are quietly resilient, and others reach out to find some sort of peace from parents that have been through the experience. Having a parent right there, that has walked in their shoes, helps.
Gloria Rucobo and Josefina Martin DelCampo (both bilingual), are two of the dedicated parent liaisons who work with the team and with the families, to help them get through treatment and be comfortable in their environment, “There’s so much beauty in being able to work here,” Gloria says as she smiles warmly.
Gloria Rucobo’s son, Raul, was 5-years-old when he was diagnosed with Acute Myeloid Leukemia, an aggressive leukemia not often found in children. According to Cancer.net, the average age at the time of an Acute Myeloid Leukemia diagnosis is 67 years. For six years, as her son received a bone marrow transplant and underwent chemotherapy, she lived the experience. Her son did everything he possibly could, but passed away when he was eleven years old. After taking some time to heal, Gloria began working as a parent liaison. It’s been twenty-one years since he passed, and she still feels close to him there. “Even though I went through this painful situation, I do believe God is using me in a positive way.”
Josefina MartinDelCampo’s son, Alejandro, was diagnosed with a terminal, malignant brain tumor at 14-years-old. Josefina thought she would lose him, but miraculously, after over a year and a half of aggressive chemotherapy, her son was told he was “cancer free” in 2008. “My son is a living testimony,” she says as her face lights up with joy. “As a parent liaison, I have found my mission in life,” Josefina says, still believing in miracles. It’s been 16 years since Alejandro’s diagnosis. With resilience and tremendous pride, he now volunteers at the Rady’s reception desk on Thursdays.
In May of 2006, when Gloria and Josefina met newly diagnosed, 6-year-old Anthony Hernandez and his family from Carlsbad, they wanted to help. Anthony was in kindergarten enjoying every second of it when he began to feel extremely tired and lethargic, “He just wanted to sleep,” his mom, Angeles, recalls. Like the Nares family, Angeles and Vincent Hernandez thought it was the flu or a bad cold. Then, Anthony’s symptoms escalated into a fever. “He began sweating a lot.”
It was Saturday morning when Anthony began to feel shortness of breath. Angeles and Vincent had the day off from their jobs and brought Anthony to North County Health Services right when it opened. NCHS examined Anthony and immediately told them to “Go directly to the ER.” Vincent and Angeles rushed him to Rady Children’s, not knowing what was happening or what was wrong.
Once they made it to Rady Children’s, and Anthony was examined, they were told Anthony had cancer. “Cancer? I couldn’t believe it. A lot of things rushed through my mind. Is he going to survive? How long will he live? I kept asking, ‘Is my son going to die? Is he going to die?’” Angeles shakes her head as she remembers her innocence and confusion during that moment. Here she was, five months pregnant and about to give life to one child, while her other lay dying.
No one could give the Angeles the answers to her gut-wrenching questions. No one knew. Each child responds differently to the chemo and the various treatments. What they did know was they needed to give him a blood and platelet transfusion immediately. They also needed to do more tests to discover what exact cancer he had and what they were dealing with. “He’s in good hands,” Josefina, the parent liaison said, comforting them.
“Can I take him home?” Angeles asked the ER doctor. “No, you need to stay,” the doctor responded urgently. “For how long?” Angeles asked. “We don’t know yet,” the doctor answered. Anthony was admitted to the “childhood cancer floor”, oncology, that night. There, he would see a new set of doctors and have many more tests. That night, around midnight, “There was a knock at the door. The doctors came in with the results of the tests. They told us Anthony had ALL, Acute Lymphoblastic Lymphoma.”
Anthony would have to have chemo administered directly into his spinal fluid to begin treatment. Then, knowing Anthony’s treatment would be long and arduous, and needing to be able to administer more and many types of chemo without damaging his little veins, an operation was scheduled for his chemo PORT to be placed after his counts came up. Ports are used for multiple reasons but mainly, for types of treatment that can last weeks, months, and years. They reduce the number of needles sticks, can give more than one treatment at a time, and can be placed into stronger veins that can withstand the chemicals over time. As soon as it was placed in the upper quadrant of his chest, Anthony began chemo in earnest.
Anthony responded well to the chemo. They were hopeful. “We didn’t know what was going to happen,” Angeles says. I had to quit my job so I could be with him every minute. Anthony looks over at his mom with quiet adoration as he talks about his diagnosis, “I wasn’t really scared. I just got a little scared when my mom thought I might die,” he says softly. “Anthony didn’t know what cancer was. He didn’t even know what the flu or a surgery was,” Angeles remembers, “But after I said, ‘Is my son going to die?’, Anthony started crying and saying, ‘I don’t want to die.’”
Anthony stayed in the hospital for two weeks. Then, chemo and labs were scheduled for every Monday and Thursday without an end date, until they knew how he’d respond. The Hernandez family tried to figure out how to do it on their own. They thought they could manage. They hunkered down and kept to themselves.
With one driver in the family, they’d wake at 4:30am, leave for the hospital at 6am and wait for their appointment in the hospital lobby’s McDonalds. Then, Anthony would have his treatment, recover for a few hours, then they would go back to the McDonalds and wait three hours to be picked up when Vincent was done with work. The days were long.
Josefina persisted when she saw them, “How are you getting back and forth to your appointments?” she asked. “There’s a Emilio Nares Foundation van that goes to North County twice a week,” Josefina strongly urged. Josefina talked to their case manager immediately. Angeles followed suit. All appointments needed to be coordinated for the Hernandez Family to get rides. Within a few days, Angeles, Anthony, and his big brother were being picked up by one of The Emilio Nares Foundation’s vans on Mondays and Thursdays - for every appointment - and taken home to recover right after.
There was no more waiting.
“The rides saved my family,” Angeles says, “Armando, our van driver, was so kind. He was so nice and he had a big smile. He would tell me to just, ‘Celebrate every day. To not look too far in the future. To live in the moment.’ It helped us so much.” Armando had seen a lot.
A lot of families use The Emilio Nares Foundation vans. Once your son or daughter is diagnosed with cancer, it is very hard to concentrate, it is hard to drive. “In the vans, all of the moms come together and become friends because we are going through it together,” Angeles smiles. “You become so close, with the families and the kids. You ride with them to all of our appointments,” Angeles says as she takes a deep breath to gather herself.
“I have to look forward, for them.”
Three of the families with children who had cancer, who Anthony shared rides with, lost their children. One family had a nineteen-year-old son, one had a ten-year-old son, and one had a daughter who was fifteen. “We would be driving with them for so long, and then we were in the van without them,” Angeles says. Many trips, the Emilio Nares van would be full, and then, other times it wouldn’t. Armando, the van driver, had seen a lot in all the years he had been giving rides. “This is why Armando encouraged us to just live in the moment,” Angeles says truthfully.
Anthony is eleven now. He had his port taken out a year ago, four years after he began chemotherapy. “He’s been in remission for one year,” Angeles says, looking at him with pride, then giggling with her daughter, born three months after Anthony’s diagnosis. “We still have to come every two months for testing, and we still have to be careful and cautious with clean food and him getting sick. We still ride with Emilio. We’ll always ride with Emilio,” Angeles says, grateful to be able to talk about her experience.
Anthony is back to school. After missing a full year, and many additional weeks and days, he’s had to work hard to catch up. But he did. Not able to be outside very much when he was sick, he loves to ride his bike now. “I like football and I love Legos,” Anthony says with an innocent, shy smile. He brightens up as he reveals he taught himself how to build intricate Lego machines from watching YouTube videos.
Back on the oncology floor, every shiny long hallway, wall, room, play room, and nurses’ station holds memories of strength, bravery, and hope of valiant battles won and lost. To commemorate the sacred space and the journey many families take on that “childhood cancer floor”, Richard and Diane Nares recently installed a beautiful “End of Treatment” bell for children to ring when they finish their chemo. It states, “Ring this bell, Three times well, Its toll to clearly say … My treatment’s done, This course is run, And I am on my way!”
Richard and Diane are still running their course. Richard and Diane wants to grow “Ride With Emilio” to every Children’s Hospital in the country. “Every child and family needs reliable transportation to get to their appointments on time. Every child deserves a chance.”
Young Emilio Nares always wanted to ride in a van. “He loved them. He was completely fascinated by them. Whenever he would see one, he would point them out,” Richard says, stopping to look at the sweet picture of his son on the side of the van, “We never got to take him in one.” As Richard walks back to the hospital, the van’s door slides to the left, and a family of four jump out, with a young girl with a scarf covering her head, on her way to chemo.
Although Richard and Diane weren’t able to give Emilio a ride in a van, his spirit lives on in the thousands of rides they have been able to give to so many. They lost their son…but gained a much bigger family.
Image by Elizabeth Ireland Lanz