Walla Walla family fights to save their 8-year-old with rare brain tumor
A Walla Walla family is on their way to London, all in hopes that an aggressive brain cancer treatment can help save their little girl. Eric and Stacie Sayler’s lives were turned upside down when they found out their daughter Julianna has Diffuse Intrinsic Pontine Glioma (DIPG), a rare form of brain cancer.
“We noticed that her eye wasn’t moving properly and so we ran up to Spokane after visiting the Emergency Room here and got an MRI and saw that there was a tumor,” said Eric Sayler, a pastor in Walla Walla.
They found out Julianna’s diagnosis on November 20 of last year. They were told the tumor is inoperable.
Stacie Sayler said, “(We thought) we just need to find the right doctor the right hospital the right drug that will work and to find out that doesn’t exist…”
Eric and Stacie said they are going to try everything possible to try to save their little girl, but also to bring awareness to the lack of treatment and funding for DIPG.
“About each child with DIPG or any form of brain cancer receives about $500 of funding per child for research, which isn’t enough to make any progress,” said Stacie Sayler.
Thirty treatments of radiation is the standard of care for a DIPG brain tumor. The rare form of brain cancer affects about 250-300 children in America each year. There is no known cure and has been no improvement in treatment in the last 50 years. No one has yet to survive this aggressive form of cancer that typically affects children between the ages of 5-9.
With such a rare diagnosis, there are not many options in the U.S. The Sayler family is heading to London in hopes that a creative, aggressive experimental treatment, shooting chemotherapy directly into the brain stem, can extend Julianna’s life expectancy from the 6-12 months they were told. But, insurance does not cover this procedure.
Eric said it has been difficult explaining the diagnosis to Julianna, along with her brother Joshua, 12 and sister Jillian, 6.
“We’ve told her that many kids have not made it …but we haven’t told her that no kids make it,” said Eric Sayler. He said he wants Julianna to have hope.
“It’s 68,000 pounds so conversion rate is about 87,000. $87000 for that first weekend of treatment,” said Eric and Stacie.
The family has been fundraising for the last six weeks, finally reaching $87,000 right before getting called by the treatment center in London. The money was all donated by people who have heard their story. Eric said many of the people who donated don’t even know the Sayler family.
The family will be in London for five weeks, from the initial surgery to the second treatment. They are still fundraising to collect the money needed for the rest of Julianna’s treatments.