Each year some 300 school-aged children are diagnosed with Diffuse Immune Pontine Glioma, a rare and highly aggressive form of cancer that affects the brain stem, the part of the brain that regulates basic functions such as breathing, heart rate and blood pressure.
No child has ever survived a diagnosis of DIPG, and Raelynn Shay Fronczak was one of its most recent victims.
Raelynn, who entered hospice care in October, died Tuesday at her home in Delhi after a courageous 14-month battle with the disease. She was 6 years old.
“She was a diva,” said her mother, Krystal Velarde, who moved back to Delhi after living in Turlock for a time. “She was very spunky. It was her way or the highway. She was so funny, always cracking jokes. And she was very mature for her age. She would talk and say sentences and I’d be like, ‘How do you even know what that means?’
“She was very loving. She was always making me gifts and giving me flowers. She always showed me a lot of love. She loved everybody.”
Raelynn also loved to dance, which led to her association with Turlock Youth Cheer, where she got to cheer for two years with her pal Blakeleih Burns.
“They were best friends,” said Blakeleih’s mom, Amber Climer. “Blakeleih took it extremely hard the first day. It was on-and-off crying for probably 24 hours. But we’ve had some long talks about it. Her dad passed away when she was little so she kind of knows about grieving. We’ve just talked about what Raelynn is doing right now. Probably dancing up in heaven. Blakeleih knows she’ll see her again someday.”
In October of 2021, shortly after Raelynn started kindergarten, Velarde noticed her daughter's left eye occasionally would wander.
“It would sort of go off to the left or off to the right,” said Velarde. “I asked her if she was doing something to make that happen and she said no.”
Eventually, the family was sent to Valley Children’s Hospital in Madera. A CT scan was performed and within minutes the family was told that a small mass was discovered in the back of Raelynn’s head.
The following day, after an MRI and surgery to insert a shunt, doctors told the family it was DPIG and presented options that would help prolong Raelynn’s life.
“I was like, ‘prolong? What are you talking about?’” Velarde said. “That’s when they stated that it was a terminal brain tumor and that, typically, you only have nine to 12 months after diagnosis.”
Entered into a clinical trial at the University of California, San Francisco, Raelynn was one of about 120 children worldwide given the experimental drug ONC-201. At first, it showed promise.
“We had to go in for an MRI every two months,” said Velarde. “The first three MRIs showed the tumor was shrinking.”
Things were progressing so nicely that Raelynn, who had completed all but two months of kindergarten at home, started first-grade classes at Harmony Elementary School.
However, a fourth MRI exam showed an increase in the size of the tumor.
“On Aug. 30 she’s at school,” said Velarde. “On Sept. 1 she had the MRI and on Sept. 3 she was completely bedridden.”
It was up and down for the next couple of months. Dressed as comic book villain Harley Quinn, Raelynn was pulled in a wagon and went door to door in search of Halloween goodies.
“She loved Harley Quinn,” said Velarde. “She’d been planning to be Harley Quinn for months. And she was able to say ‘Happy Halloween’ and ‘Trick or Treat’ and ‘Thank you.’”
But within a few weeks, more and more of Raelynn’s functions began shutting down, and she was immobile for the last couple of months her life.
“After the clinical trial we tried other things,” said Velarde. “We tried no sugar, juicing, supplements, CBD — everything to prolong her life and keep her here with us longer. I never told her it was terminal. I was open with her about having a tumor, but I don’t think she really knew the extent of the danger. I didn’t want to overwhelm her with fear.”
During her interview with the Turlock Journal, Velarde was composed, brave and strong, readily sharing stories about her daughter and laughing at the memories of her antics.
“The last four months she needed 24/7 care,” said Velarde. “It gets to a point where you’re constantly in caregiver mode and you don’t have time to deal with emotions. I still feel like I’m in caregiver mode. After the funeral, I’ll have more time to deal with the emotions. I do have my moments, I do cry a lot, randomly throughout the day. But we’ve had family coming to be with us and bring us meals. It’s nice to have people around.
“Everybody has tons of videos of her, so we’ve been watching videos and remembering how she was,” said Velarde. “She was so fun.”
Raelynn will be buried Wednesday at Allen Mortuary in Turlock at 1 p.m. To help defray burial costs a GoFundMe account has been established. Visit gofundme.com and type in “For Raelynn’s Headstone” in the search field.