Tempe couple’s initiative plays a vital role in girl’s recovery
Elilai Ramarui agreed she was living her best 9-yearold life ever one recent weekend, romping in Los Angeles, appearing on television for National Pancake Day and zipping around on her hoverboard. A year ago, Elilai’s head was bald, her joints were sore, and her exhaustion was off the charts — all side effects of chemotherapy to treat a gutpunch cancer diagnosis the then-second grader got on March 14, 2022.
“She had a dream board that she made toward the end of chemo with Post-it notes on which she wrote things she wanted to do,” said her mom, Melody Orak. “Things like going to Target, playing with friends without a mask, visiting her cousins. There’s only one Post-it left, and that’s swimming.” Even more best-life living is on tap for Elilai: On May 6, she will blow the air horn to start the 10K run and the 5K run/walk as honorary race starter for Children’s Cancer Network’s 13th annual Run to Fight Children’s Cancer (runtofightcancer.com). at Mesa Riverview Park. What a difference a year makes. Diagnosis and treatment The journey began in February 2022 after Orak noticed a swollen place above her petite daughter’s left elbow.
A few days later, following an X-ray at their pediatrician’s office, Orak and her husband Abel were advised to obtain an MRI of Elilai’s arm. Further testing at Phoenix Children’s Hospital showed that the girl had Ewing sarcoma, a rare cancer that occurs in bones or in soft tissue around the bones. An estimated 1% of all childhood cancers in the U.S. are Ewing tumors, diagnosed in just 200 children — mostly teens — annually. Chemotherapy began immediately — 12 weeks of it — at an outpatient facility, and the family learned more about blood counts, fever danger and hair loss than seemed possible.
“When she was first diagnosed, I was in freeze mode. Once we got direction, it was time to be tough. For me, there was no option not to be tough,” Orak said. She shaved her head in solidarity when her girl’s long black hair began to fall. The family waded through Elilai’s odd cravings — sweet Corn Pops, then cups of salty noodles, followed by a week of only steak. At the end of chemo last summer, doctors decided she could not have surgery to remove the shrunken tumor because of her young age and small size. Rather, she would have 33 consecutive days of radiation and 16 more weeks of chemo. “At first, radiation was her favorite treatment because she could do it in 15 minutes,” Orak recalled. “But then it started to hurt, to burn, and she would scream from the pain.
Moving forward one day at time Elilai finished treatment on Nov. 15, and Orak began thinking ahead to January when her daughter would return to third grade at Summit School of Ahwatukee. What did her classmates know about cancer? How could they help Elilai’s return to this new “normal”? Hospital staff referred Orak to Children’s Cancer Network, which had myriad resources for families, among them, Honoring Our Peers Every Day. H.O.P.E. offers in-class, age-appropriate programming and was exactly what Orak was searching for.
The first time Orak met Tempe resident Patti Luttrell, executive director and co-founder of CCN, was in December. The Ramaruis attended the first Winter Family Holiday Party in CCN’s new Let’s Move Center, which opened last May. “Patti told me, ‘Elilai is in this survivor space now, you can breathe a little bit.’ It was so comforting because you forget to do that. You are just living in the moment for so long,” Orak said. Patti and her husband Steve, CCN’s president, had their offices and warehouse on Kyrene Road converted into a 3,000-square-foot activity center. It offers families inclusive, engaging and ageappropriate physical activities in a clean, safe, colorful space. There is free air hockey, foosball and pingpong, organized Nerf gun wars, laser tag, marshmallow wars and miniature golf, as well as arts and crafts activities and music. “Physical activity is really the key to minimizing the side effects of treatment and maximizing good outcomes for many of these kids,” Patti Luttrell said. “It’s physically, emotionally and socially beneficial, and it boosts their ability to feel the best that they can.”
The Let’s Move Center was a “dream come true” to Melissa Millward, who found she could utilize the space for her 3-year-old son’s birthday party last July after the clubhouse at their Tempe apartment became unsuitable. “It was really important to me to have his birthday be great,” said Millward, referring to Sebastian who, at 19 month old, was diagnosed with Stage 4 neuroblastoma on March 19, 2021. “When you go through something like this, you never know when it’s going to be their last birthday. It’s something you think about. I wanted that to be a fun day, a day just for him. Patti pretty much saved me.” Two years ago, at the height of the COVID-19 pandemic, Millward and her husband Kent noticed a large bruise on the side of their boy’s abdomen. When he started losing his appetite and behaving differently, she knew something was wrong. A visit to the pediatrician, and further testing, confirmed the cancer growing in their baby’s belly. “I felt like there was a weight on my chest, and I didn’t think I was going to survive,” she said. His treatment — chemotherapy, high-dose radiation and high-risk surgery — followed, as did two bone marrow transplants and immunotherapy. Sebastian finished on Nov. 14, 2022, and scans showed he is cancer-free, although close monitoring will follow for at least five years. Millward is hoping her family can attend the Run to Fight, which also offers an honorary walk just for all ages of cancer survivors.
Nearly 1,000 participants, including 75 survivors and their families, are expected that day, said Patti Luttrell, noting that an estimated $1 million has been raised through the race since its inception. “The run brings awareness to childhood cancer and celebrates survivorship, and it honors those who have not survived their cancer,” said Patti Luttrell, whose son Jeff, now 34, was diagnosed with leukemia at age 5. “It’s an opportunity to share with the community love and support for these families and increase resources available to them.” Run to Fight proceeds have funded two parttime family mental health therapists through for the past eight years. They provide counseling to young patients, their siblings and parents.
Overall, since its founding in 2005, CCN has provided more than $8 million in financial assistance and support to Arizona families. Serving more than 800 families annually, CCN has distributed more than $600,000 in gas and food cards and basic needs since 2013, and awarded 271 in post-secondary scholarships to survivors, siblings and parents since 2016. Said Patti: “Childhood cancer turns lives completely upside down, and it impacts everyone in the family, but each person reacts a little bit differently.” “Moreover, incidences of PTSD are recognized, not just in patients, but in parents and siblings, too, and for up to several years after their treatment. “The journey doesn’t end when the chemo ends.” In March, Elilai was among childhood cancer survivors modeling in CCN’s 20th annual Inspirations Fashion Show and Auction, one of its biggest, most popular fundraisers. Soon, she’ll be commanding the air horn on an early May morning. It’s all part of living her best life.