A selfless CHOC parent’s advice to other families during a difficult medical journey
Parenting a child who is sick can feel surreal.
Norma describes the experience in three words: dark, scary and long.
Her daughter, Eliza, was first diagnosed with acute lymphoblastic leukemia (ALL) at age 12. Since then, she’s unfortunately relapsed, undergone several treatments and received a bone marrow transplant – causing Eliza and Norma to be in and out of the Hyundai Cancer Institute at CHOC for over eight years.
But for Norma, the darkness was overshadowed by Eliza’s light and strength. Thanks to the excellent care and compassion from CHOC, the past eight years have also been filled with love, humor and treatment breakthroughs.
Even when she wasn’t feeling well, Eliza was able to laugh and encourage other teens also undergoing cancer treatment with the Adolescent and Young Adult (AYA) Treatment Program at CHOC.
Today, 20-year-old Eliza is in remission. She works and volunteers, practices photography, sings karaoke and hangs out with friends.
“CHOC is our second home,” says Norma. “As much as we didn’t want to be at the hospital, we love CHOC and the wonderful staff.”
Overcoming treatment challenges together
Norma credits open communication for getting her and Eliza through her grueling medical journey. Their relationship is strong; they talk about everything – good and bad – and try to have a sense of humor about it all.
“Eliza and Norma were always dancing and laughing,” says Dr. Rishikesh Chavan, oncologist and director of CHOC’s Blood and Bone Marrow Transplant Program.
Looking back, Norma remembers specific challenges that Eliza had to overcome. Due to the severe side effects from chemotherapy, Eliza didn’t want to eat anything. So much so that she was on her way to being placed on a gastrostomy tube (G-tube or feeding tube) to ensure that she would get the nutrients she needed. With G-tubes being uncomfortable, Norma was on a mission to help encourage Eliza to eat.
But Eliza only had a craving for those popular red, spicy-flavored crunchy chips.
Norma, being the caring, concerned mom she is, thought that chips with artificial red coloring and spicy flavor would be bad for Eliza’s health during her cancer treatment. But even when offered other food alternatives, Eliza didn’t budge.
Eliza’s oncologist, Dr. Carol Lin, reassured Norma that the occasional chips wouldn’t harm Eliza’s treatment.
Turns out, those red chips opened the door to Eliza eating again. Little by little, Eliza’s appetite increased, and she began eating. She didn’t have to use the feeding tube at all.
Supporting a child undergoing cancer treatment: ‘There was no other way than to go with her.’
This was just one of many instances where Norma’s support helped Eliza during her treatment.
“Norma was Eliza’s rock through it all,” says Dr. Van Huynh, oncologist and director of CHOC’s CAR T-cell therapy program.
Norma learned to follow Eliza’s lead. During her journey, Eliza was in the driver’s seat and Norma made sure she was sitting in front right next to her.
“There was no other way than to go with her,” says Norma. “I just wanted to be there for her.”
But how did Norma also balance time for herself? She took up knitting using a pair of chopsticks from a takeout order.
That, and when Eliza was feeling well enough, Norma would make sure to go home to spend time with her other kids. Being able to go to their sports games and sit and talk with them filled Norma up and helped her support Eliza.
During long hospital stays, the CHOC staff helped bring hope to Norma and Eliza. Mary English, nurse practitioner specializing in oncology medicine, played a huge role in Eliza’s treatment journey. She challenged Eliza with love and continues to make her feel well cared for, even today.
Volunteers from the Junior Foundation, a local non-profit, also brought hope to Eliza when they came to serve dinner to families in the oncology unit. During an especially difficult stretch of Eliza’s treatment, the volunteers made her smile.
Giving advice and giving back
Since then, Norma and Eliza have stayed in touch, and today, they volunteer with the foundation themselves. They serve dinner to CHOC families every other week.
Just as Junior Foundation brought Norma and Eliza hope during their long stays at CHOC, Norma uses serving dinner as an opportunity to encourage other parents.
“I encourage families to trust in CHOC. To trust in the doctors and in new technology,” says Norma. “I tell them that our kids are in the best hands. The CHOC staff is always researching and coming up with the best possible treatments.”
However, Norma also reminds parents that not all medical journeys are alike. Some treatments will work for some kids but not others.
“Just trust in the right next step for your child,” she says. “Keep going.”
But her biggest piece of advice to other families going through a similar journey is this: “You are not alone. Don’t be scared to reach out and ask for help. It’s not embarrassing. You didn’t sign up for this. Let others help you.”
Looking ahead, Norma hopes that Eliza’s bone marrow transplant continues to be successful and that she can get back to a normal routine. Both Norma and Eliza will continue to be involved at CHOC, their home away from home.
“We just love CHOC,” says Norma. “The entire staff has our back. No other hospital compares. We are so grateful.”
Aside from CHOC’s care, Eliza’s resilience and Norma’s support made all the difference to her healing. With humor, encouragement and selflessness, they have braved all the unknowns and challenges of a long, difficult medical journey. Together, they can overcome anything.
Get more expert health advice delivered to your inbox monthly by subscribing to the KidsHealth newsletter here.
Learn more about the Hyundai Cancer Center at CHOC
CHOC Hospital was named one of the nation’s best children’s hospitals by U.S. News & World Report in its 2023-24 Best Children’s Hospitals rankings and ranked in the cancer specialty.
