By IOWA STEAD FAMILY CHILDREN’S HOSPITAL
IOWA CITY, Iowa — Jackson Tijerina (Council Bluffs, Iowa) was born a seemingly healthy boy, but at 5 months old, he began vomiting daily and was not growing. Ongoing medical tests did not provide any conclusive answers; around his fifth birthday, Jackson began having headaches so intense he would scream in pain at night.
“They kept telling us that he had acid reflux,” says his mother, Amy. “I just kept feeling like it wasn’t right.” A brain scan finally revealed Jackson had a brain tumor called ‘pilocytic astrocytoma.’
“We knew that there was something wrong, but we just didn’t expect to hear ‘brain tumor.'” Amy recalls. The tumor wrapped around the brain stem, affecting Jackson’s vision, metabolism, balance, and learning abilities, and its proximity to his spinal cord made surgery challenging.
Doctors at his local hospital removed 90 percent of the tumor, but three months later, scans revealed Jackson’s tumor had spread throughout his brain and spine. He received chemotherapy; however, his tumor did not respond.
“(A friend) referred me to University of Iowa Stead Family Children’s Hospital and told me about the pediatric neuro-oncology program, and how the hospital was at the top of the research in specifically brain tumors,” recalls Amy. Without hesitation, the family drove four hours to Iowa City.
They met with pediatric neuro-oncologist Mariko Sato, MD, PhD, who answered their questions and arranged for them to meet with the rest of the pediatric brain tumor team — the only such team in Iowa — that same afternoon.
“Immediately, I felt relief,” remembers Amy. “Dr. Sato told us not to give up and that there is always a way.” The neuro-oncology team formed a plan while at the same time treating the family with compassion, empathy, and kindness, she recalls.
“When we walked out of here, we felt great,” says Jackson’s father, James. “We had hope on our side, and that’s what you need sometimes, just a little bit of hope.”
Part of Jackson’s treatment included placing a port in his chest to administer medications through a central line; something he eagerly shows off when asked.
“Whenever anybody talks about his port, he will lift his shirt up, and he will tell you, ‘See, I’m Iron Man,'” Amy says.
In summer 2018, Jackson’s tumor stopped responding to treatment. “Even though his tumor is quite common, his mutation makes it rare. There are only a handful of children in the whole United States that have this type of mutation,” explains Amy. “(At our local hospital,) we were told he was given 12 months left with us. We didn’t think we had any other options. We came back to Dr. Sato, and she explained to us, ‘Don’t ever say never. Your fight is not over.'”
Jackson’s team has been able to provide the most advanced treatment options available, including an experimental clinical trial drug that specifically targets his cancer mutation. The medication has improved Jackson’s outlook significantly.
His mutation doesn’t allow Jackson to be in the clinical trial, but his care team received special authorization.
“If it weren’t for this medication, I don’t think we would have Jackson today,” Amy says.
Funding for pediatric cancer research is important, Amy adds. “When he was diagnosed three years ago, the targeted therapy that he’s on currently didn’t exist specifically for children,” she says.
Amy also cites the importance of seeing specialists at Iowa’s only comprehensive children’s hospital. “Even though he has brain cancer, it can affect his eyesight, so we would have to see an ophthalmologist, or endocrinology for growth stimulation,” she says. “I can’t even count how many times Jackson has been in surgery for different things that are not affiliated with his brain. There’s a whole team of doctors for one type of diagnosis.”
Jackson now hopes to become a veterinarian, join the U.S. Navy Blue Angels, or be a kicker for the Iowa Hawkeyes football team.
“Once we came here and talked to our doctors, they said, ‘There’s a lot of hope out there,'” James says. “That’s the feeling we got from Iowa City: the word ‘hope.'”