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Dec. 2024 | Vol. 24 Iss. 12
SANDY SIXTH GRADER GIVES BACK AT FESTIVAL OF TREES By Tom Haraldsen | t.haraldsen@mycityjournals.com
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o watch Ruby Thackeray today, while she swims or plays soccer, practices the violin or just enjoys writing, you’d never know the medical challenges this young lady has endured. She’s an 11-year-old sixth-grade student at Albion Middle School in Sandy, but when she was just 3 years old, her parents Ali and Mark wondered if she’d make it to her fifth birthday. Today, she’s helping celebrate the annual Festival of Trees as the patient champion for 2024. Her story is one of hope and gratitude, and now of giving back to Primary’s. “We took her to the doctor because there was a little spot at the bottom of her neck,” Ali recalled. That turned out to be cancer which spread into her lungs. One tumor was pressing on her heart, and her family was considering hospice care. About that time, the doctors at Intermountain Primary Children’s Hospital began using a new technology called rapid whole genome sequencing (rWGS). They used it with Ruby and were able to identify a larger therapy for Ruby’s cancer. Over the next few months, the tumors in Ruby’s lungs began to shrink by 90%. “Her treatment was largely outpatient,” Ali said. “We had tried other immunotherapy that didn’t work, but this new one did. It was in the beginning very intense-she had to be at the hospital to take it, but it was just a pill. So luckily, it was something she could eventually take every day at home.” And she’s never had to have chemotherapy. Ruby’s challenges didn’t end there.
She’s had to deal with things that aren’t associated with cancer. She has broken a toe, she fractured her heel, but she never had to be hospitalized. “I had a heart ablation in March and another one in September,” Ruby said, which involves a minimally invasive surgical procedure for irregular heartbeats or arrhythmias. “She had problems with a bunch of leaks in her heart from time to time,” Ali said, “so they knew about it from when she was in the NICU. Her heart has always been monitored and they thought she’d grow out of it, but it came back when she was 8 or 9, and her heart rate would triple due to SCT, supraventricular tachycardia. She had an ablation to try to fix it in March, and it has a 95% success rate. But she's a special 5%, so she had another one done just in September.” As this year’s Festival of Trees approaches, she has been thinking back on her experiences at the hospital and the way she’s been treated. “It’s been really good,” she said. “I love all the blankets they give us, and when I go in for checkups, they give me more blankets, which is nice. And I love all the crafts we get to do there. And because of my experience there, I actually want to be a child life specialist when I grow up.” In addition to serving meals at the Ronald McDonald Family Room, she and her family will decorate a tree for the Festival that runs Dec. 4-7 at Mountain America Expo Center in Sandy. All funds raised at the festival support the hospital to provide care
With her mother Ali, Ruby made several visits to what she called “The Pirate Ship” at Intermountain Primary Children’s Hospital. (Photo courtesy of the Thackeray family and Intermountain Health)
for children in need, and help Intermountain Health’s Primary Promise program. As the patient champion, she’s also gone to a Las Vegas Raiders game, and become the “12th player” for a pregame event at a Real Salt Lake game. “We’re not sure how we’re going to decorate the tree yet,” Ali said. “Whenever Ruby hears about other cancer kiddos at Primary’s, it helps her to realize how blessed she is to be healthy, but it also can sometimes make her
heart heavy. I mean, she's only 11, but she knows multiple kids who have passed away. For her to be able to create a tree in honor of these kids who don't get to come home, or who don't have a miracle phase one trial drug to try, is something she is very grateful for. Ruby would love to kind of help these kids, and would like the tree to represent them. For them to know we love you and we see you. So that's what we're thinking right now.” Continued page 5