Elizabeth Psar’s daughter, Julia, has been gone almost a year, but her short life is still an inspiration.
“I have derived strength from her,” says Psar, a child-advocacy lawyer whose career and personal life are primarily focused on helping children.
Psar and her husband, Rado, had a “perfect” life until December 2015, when their 2½ -year-old daughter, Julia Barbara, suddenly started having balance problems.
“I thought she had an inner-ear infection,” says the attorney. “It never occurred to me that she had a brain tumor.”
Psar was at Juvenile Court when her husband took their daughter to the pediatrician. She remembers thinking that Julia would have to have tubes put in her ears.
“That was going to be the worst thing that we were going to have to do,” she says. “That was that Monday morning, and by the evening they’re saying she has a brainstem tumor. And then the next day they’re saying she’s going to die.”
The Psars learned that their little girl had DIPG – Diffuse Intrinsic Pontine Glioma – a brainstem tumor that is inoperable and incurable. The tumor usually strikes between the ages of 5 and 7, but it can be found in younger children and teenagers.
The Psar family, including son Vasil William, now 5, went to St. Jude Children’s Research Hospital just before Christmas 2015 to have a port put in for the medications she would have to have. They returned home for the holiday because the doctor said that it would probably be Julia’s last Christmas.
The four returned to St. Jude in January 2016. Julia had to endure a grueling regimen of radiation, chemotherapy and experimental drugs. Steroids were part of her treatment and, Psar says, had a horrific effect. Julia bore it all bravely, but:
“She just never smiled anymore, and she was a child who smiled all the time. The steroids just altered her so dramatically.”
There were times when Julia seemed slightly better. But during a Make-a-Wish trip to Slovakia to visit Rado’s family, she started experiencing nausea again.
Julia died in her sleep on May 17, 2016, exactly one month short of her third birthday.
A few months later, Elizabeth and Rado started the Julia Barbara Foundation to raise awareness of DIPG and raise funds for research. Last month, state Sen. Doug Overbey of Maryville and state Rep. Jason Zachary of Knoxville sponsored a resolution to make May 17 DIPG Awareness Day in Tennessee.
The Julia Barbara Foundation is hosting a Gala Celebrating DIPG Children at 7 p.m. Saturday, May 20, at the Women’s Basketball Hall of Fame, 700 Hall of Fame Drive. Tickets, $60, are available on eventbrite.com.
The Chillbillies, whose lineup includes Juvenile Court Judge Tim Irwin, will perform. Psar says the entire Juvenile Court team has been very supportive of her family and the foundation.
It’s appropriate that the event is taking place at the Hall of Fame. One of the most high-profile DIPG victims is the late college basketball player Lauren Hill, who was inducted into the hall. Hill passed away in April 2015, but her foundation has raised millions for DIPG research and awareness.
Psar says the incidence of DIPG is low – about 400 children are living with the diagnosis right now – but “that doesn’t include the children that die from it that nobody catches. It’s a very invasive tumor. It’s like a weed in your garden – it grows so quickly.”
Parents who notice symptoms should talk to their doctors about having a CT scan, she says.
The Psars are members of the DIPG Collaborative, made up of about 20 family-based foundations.
“Almost every day a child dies from DIPG. Every day another child is diagnosed with a death sentence. As families, we just don’t want that to continue. We want other children to not have to go through what our kids went through. We want to stop it.”