“She’s probably just teething,” they said.
But the fever persisted, and so did the Camarillos’ trips to the doctor.
After repeated visits to local hospitals, they were referred to MD Anderson Children’s Cancer Hospital, where Ivana was diagnosed with infant acute lymphoblastic leukemia, or infant ALL, a rare form of cancer. That was in 1999, when the disease had a 10% survival rate.
“When you hear you have cancer, you think that’s the worst news,” Gerardo says. “But when you hear your child has cancer, that’s when the nightmare starts.”
Ivana began receiving chemo the day after her diagnosis. When she turned 1 1/2 years old, her team of specialists recommended a relatively novel treatment: a stem cell transplant. Stem cells would be taken from a newborn donor’s umbilical cord blood and injected into Ivana, just like a blood transfusion. From there, the stem cells would travel to Ivana’s bone marrow where they’d begin making healthy blood cells to replace Ivana’s diseased blood-forming cells.
“We said ‘yes, let’s do it,’” Gerardo says. “It was that or do nothing, and it was not an option for us to just go home and wait.”
The transplant worked.
Today, the survival rate for infant ALL is closer to 40% and cord blood transplants are a standard part of treatment.
Now a bubbly 10th-grader, Ivana is active in her school choir and thinking about college.
“I want to go to college out of state,” she says as her dad rolls his eyes the way only dads of teenage girls can. “But my goal is to come back here and teach.”
Ivana wants to teach in MD Anderson’s Pediatric Education Program.
Sharing their experience
Both Ivana and her dad regularly share their story. They want to help others facing a similar diagnosis navigate the physical, social and emotional complexities of childhood cancer and caregiving.
“This is an experience that’s easier to share with others who’ve been through it,” Gerardo says. “We all long for the feeling of being accepted and understood, and when you meet someone who’s gone through the same thing, there’s an instant connection.”
These days, the two help new patients find their way around the hospital and navigate the world of childhood cancer.
Gerardo is a member of the Children’s Cancer Center Family Advisory Council, the Candlelighters Childhood Cancer Family Alliance and the Anderson Network Steering Committee. Together, these groups support families of children with cancer in the form of weekly on-site support groups, a quarterly educational newsletter, practical assistance such as parking passes, gas cards, meal passes and grocery store gift cards, family activities and camps, and academic scholarships for patients. Ivana serves on the Family Advisory Council’s IMPACT committee, which is specifically for adolescent and teen patients.
“Sometimes it’s easier to hear things from your peers,” Ivana says. “You can say, ‘Yeah, I went through the same thing,’ or ‘I know what it’s like to be stared at or bullied.’”
Growing up, she says making friends was difficult because the demands of her treatment forced her to miss so much school.
Today, after being cancer-free for a decade, she’s more accepting of who she is and speaks out passionately against bullying.
“I don’t need makeup to feel beautiful,” she says. “I try to tell people to find their true beauty.”
Her biggest worry these days?
“Boys,” she says with a giggle. And again, her dad rolls his eyes.