Kirsten Peregrina was relentless.
Something was wrong with her 2-year-old son, Jacob, whose symptoms grew from random vomiting and dizziness to lethargy and unresponsiveness. Peregrina took her son to a variety of physicians, sometimes two and three appointments a week earlier this year, but most downplayed the warning signs.
“I just would not accept that,” she said.
A particularly bad spill on March 8 put Jacob in the hospital, where a CT scan discovered a mass in his brain. The boy immediately was airlifted to Phoenix Children’s Hospital, and an MRI revealed a brain tumor wrapped around his brain stem.
Peregrina’s child had cancer.
“It’s one of those things you think is so rare,” she said, “but it’s only rare until it happens to your family. It’s devastating.”
Jacob had surgery two days later, and when Peregrina and her husband, K Watanabe, learned that months of chemotherapy and another surgery were required, they moved from Tucson to Tempe to be close by.
They were connected to Children’s Cancer Network (CCN), a Chandler-based nonprofit founded by Tempe residents Patti and Steve Luttrell in 2004. The Luttrells had experienced a lack of services and support when their own young son Jeff was diagnosed with leukemia.
Today, CCN annually helps hundreds of Arizona pediatric cancer patients and their families. Nearly $5 million in gas and food cards, wigs, bus passes, health and wellness activities and other benefits have been provided, in addition to college scholarships for older survivors and research funds.
With September being Childhood Cancer Awareness Month, CCN is hosting Pinwheels for Hope, a virtual event aimed at rallying the community around the cause. The goal is to raise $22,500 — $25 for each of the 900 Arizona children in cancer treatment.
Donations are being collected through Sept. 30 at childrenscancernetwork.org/pinwheels
More than 300 Arizona kids are diagnosed with cancer each year, and the average length of treatment for the most common form, leukemia, is more than three years. The National Cancer Institute reports 15,270 children, from birth to age 19, are diagnosed annually in the U.S., and there are more than 600,000 childhood cancer survivors.
“With the COVID-19 pandemic, we’ve all experienced what cancer families experience every day — the isolation, the fear of walking into a store,” said Patti Luttrell. “And it has raised our empathy quite a bit.”
Luttrell was invited to participated in crafting the 2020-24 Arizona Cancer Control Plan, a five-year strategy for preventing and fighting cancer in various populations. The goals for childhood cancer are to raise awareness, increase resources and build advocacy.
“The main reason childhood cancer is the most overlooked and underfunded area of all cancer research is that the numbers (of diagnoses) are small compared to the numbers of adult cancer patients,” Luttrell said. “The survival rate is improving (82 percent, depending on the cancer), but two-thirds of these kids have late effects that can be chronic and even life-threatening. So the impact on society is greater, even though the numbers are smaller.”
Peregrina’s son has lost his hair, eyebrows and eyelashes, and is sometimes plagued by vomiting, weakness and fatigue. But Jacob is learning to speak, crawl and walk again, and his parents are taking this journey one day at a time.
“He’s been amazing,” she said. “He’s still laughing and playing, and he’s so resilient.”
Luttrell and CCN have provided the Watanabes with cleaning supplies, gas and food cards and arts and crafts and small toys for Jacob. But the support — from someone who knows what she’s going through — has been the biggest blessing.
“I’ve been thinking of what can I do when we are through this to help other families, like CCN does,” Peregrina said. “That’s what God is trying to show me.”
Next month: CCN has rescheduled its Run to Fight Children’s Cancer, postponed from April, as a virtual “Spirit Week,” Oct. 18-25. Run, walk, jog, bike, etc. in the 5K or 10K, help build awareness of childhood cancer and raise money for research, treatments, patient education and support services. $45. runtofightcancer.com