“So many times I wish people could meet the “before DIPG” Julianna. She was always bubbling over with joy, happiness, and giggles. She had bouncing blonde curls and an infectious smile,” Julianna’s mom Stacie says.
It’s nearly impossible to reconcile the child sitting before us with the one in the picture in her soccer uniform from last fall that Stacie holds up as evidence on her phone.
But she’s still in there, the child that everyone who knows her loves, telling us through half-opened mouth from her carefully positioned place in the corner of the couch all about her life in Walla Walla, Washington.
The family lives on a small farm, complete with two horses, Julianna’s service-dog-in-training Ellie, and her cat Kloie and the chickens that she shows in the county fair with her local 4-H Club. While she’s particular about how she looks and loves to dress up “fancy,” Julianna’s not afraid of getting dirty while working around the farm.
Julianna has always led an active life surrounded by her family, who she adores. She is homeschooled, alongside 13-year-old brother Joshua and 7-year-old sister Jillian. She looks forward to learning in school every day, and she enjoys doing gymnastics, swimming, riding bikes, and playing soccer on a team every fall. As Julianna puts it, “I’m a going girl, not a sitting girl!”
Her siblings call her “Little Mama,” as she always cares for others, and Julianna dreams of one day becoming an obstetrician. But since she developed her “bump” (which she calls her tumor), she’s set her more immediate sights on educating people about DIPG.
Her mumbled words sometimes got in the way of this chatty girl telling us her stories, but it didn’t frustrate her to the point where she gave up trying. She has a lot to teach the world, and she’s not about to let her illness stop her from doing it.
Stacie can’t help but well up at her daughter’s selfless desire to share her experience. She brushes away the tears that won’t listen as she shows us YouTube videos that Julianna made since her diagnosis, where she relates the depressing statistics about brain tumors. Julianna uses powerful graphics to show the disproportionate amount of funding that goes to adult cancers, as her own face is puffy from the steroids she takes to keep the swelling in her brain from her tumor under control.
Julianna was diagnosed with DIPG just one month after her 8th birthday on November 20th, 2016. When she came in from playing with friends, Stacie and Julianna’s dad Eric noticed that her right eye suddenly didn’t cross the midline, and Julianna complained of seeing double. They rushed her to the ER and were transferred that night to another hospital in Spokane, three hours away. The doctors ordered an MRI, and soon after her parents were informed that Julianna had a brain tumor, most likely DIPG. “We were casually told that she had six to nine months to live,” Stacie recalls.
They went for a second opinion at Seattle Children’s Hospital, where a biopsy confirmed the original diagnosis.
Since then, Stacie explains that Julianna’s journey has been a “true whirlwind and rollercoaster.” She began 30 days of radiation in Spokane starting on November 29th, and four weeks after she completed those treatments, Julianna received Avastin infusions every two weeks. On February 14th of this year, the family learned that Julianna was accepted into the London CED program, and on March 5th, she had an 8-hour surgery at the Harley Street Clinic to place the catheters that would deliver that treatment three times until the beginning of May. Stacie says that while the doctors in London were wonderful, the family made the difficult decision to discontinue treatment due to the side effects it caused Julianna and the lack of response her tumor showed.
The degree to which Julianna’s right eye turned in has only gotten worse over time, creating two images of everything she sees: a clear one, and one she knows isn’t real. As so often happens with cancer, the interventions and treatments have created their own set of problems. After the biopsy, the right side of Julianna’s face became paralyzed, and the left side of her body went numb. Radiation triggered temporary deafness in her right ear, and the CED infusions caused her to lose the use of her left hand and her left leg to become weak.
Nearly exhausted of options, Eric and Stacie prayed about what to do next. They talked with other parents whose children were receiving treatment in Mexico, and they decided to send Julianna’s scans to the team for review. Three days after they heard back that Julianna had been accepted, the family flew to Mexico, and Julianna received her first IA treatment on June 2nd. At the time we met, the plan was to continue IA treatments every 17-21 days, and hopefully start immunotherapy on her 3rd infusion.
Julianna’s doctors in Mexico “see” her, too. Dr. Nestor, a resident at Hospital Angeles, points to a picture of Julianna from just a few months back to remind his team that this is the little girl they’re treating.
Even in Mexico with this promising treatment, Julianna has had a rocky road with her “bump.” The dizziness she experienced prior to her first IA subsided initially after treatment, but has since returned. She also developed some shakiness in her hands that worsened after her second IA. They had to increase her steroid dose yet again because of inflammation, which has pushed out the start date for immunotherapy.
Julianna’s faith in God and His power to heal persist now—maybe even stronger than before. The night after her diagnosis, Julianna was feeling sad, so Stacie began reading her the Facebook comments people had posted saying that they were praying for her. Immediately, Julianna felt better knowing that she had her own “Team Julianna praying family,” as she called it. Her gratitude turned to concern when she asked if all the other kids in the hospital had a big praying family, too. Stacie said that she wasn’t sure if they did, but that they could pray for them. Julianna leapt at the opportunity to spread the love and asked her mom to make another post requesting that her praying family add all the other cancer kids to their prayers.
That night, Julianna also decided to start a foundation that would help other children battling DIPG. Whenever anyone gives her spending money, Julianna puts it straight into her project fund. “She loves to count it and talk about how she wants to tell her story to raise awareness and be other kids’ hope after she gets well,” says Stacie.
Throughout her journey and at every appointment and procedure, accompanied by the soft and steady presence of her battle worn doll, Susie, who sports her own IV, a spinal, and a port, Julianna remains steadfast in her faith, her prayers for a miracle spinning the threads that hold God to the promise to take care of His children.
Julianna won her battle against DIPG and went to be with Jesus on August 18, 2017.
You can follow her journey on Facebook:
https://m.facebook.com/groups/201059360350858
To learn more about DIPG and the difference you can make, visit Julianna’s memorial foundation website:
Making DIPG History in Monterrey 