When 5-year-old Luke Miller rang the bell in February signaling the successful end of chemotherapy, he was actually a little sad to see his 2 1/2 years of treatment – half his life – come to a close.
That’s how much he adored his medical team at the St. Jude Affiliate Clinic at Novant Health Hemby Children’s Hospital. And they adored him even more.
Megan Miller gazes at her son squirming in her lap – a ball of boundless energy and red hair that has grown back – and sees more than a cancer survivor. She sees a child whose spirit inspires other cancer patients waiting to ring their own bell.
“Luke,” his mom said, “turned something so hostile into something so hopeful.”
The care your child deserves.
‘He brought so much joy’
The clinic across from Novant Health Presbyterian Medical Center treats patients up to age 22 who are dealing with cancer or blood disorders. Among the 2,300 patients seen in 2023, Luke was the only one whose steroids were crushed and sprinkled over his tortilla chips and guacamole. “Mom,” he announced, “that tasted funny.”
That’s Luke, said his oncologist, Dr. Christine Bolen, who has been there from the start of his journey. “He’d show up with a smile and his trains. He has a tremendous capacity to see the positive. He brought so much joy to everyone.”
About those toy trains. When Bolen needed to look in his ears, she’d tell Luke she had to see whether the trains were running on time. When he’d leave a caboose or two under a chair, nurse Kristen White and her colleagues would stash them away until next time. “My ladies,” he called them.
“This became like a second home to him,” White said. “You don’t see that, where they want to stay and play.”
‘Dust himself off and move on’
A swollen lymph node led to the diagnosis of B cell lymphoblastic lymphoma on Oct. 16, 2021. Luke was just short of 3 years old. When they were told the news, his mom fell to the ground. Then she picked herself up, literally and figuratively, and with her husband, Brent, followed the doctor’s order to get him to the St. Jude clinic immediately.
Thus began 2 1/2 years of chemotherapy, ranging from a couple of hours a day to all day. Interspersed over the course of a year were six-week periods when he came every weekday. Luke and his mom or dad would leave home in Huntersville at 7:30 or 8 a.m. They’d stop and get Luke a four-cheese souffle from Panera. Sometimes they’d have it DoorDashed to the St. Jude Affiliate Clinic.
Luke would wash it down with orange juice from his red YETI cup. Then he would get down to business.
The Millers would arrive home anytime between 1 and 4 p.m., rest up and do it again the next day, souffle and all.
There was more. Once a month Luke had a spinal tap at Novant Health Hemby Children’s Hospital. As Bolen explained, this procedure removes spinal fluid to be analyzed for leukemia and also administers chemotherapy into the spinal fluid. All children with acute leukemia undergo this procedure.
Luke dealt with some nausea during his four phases of chemo. He lost that beautiful head of hair and some sensation in his legs. When it was over, he had to relearn potty training. But he never lost his verve, which was obvious since chemo was administered through a mobile IV pump. In other words, he had the run of the place.
Here’s what one of his nurses, White, remembers: “We were always chasing behind him running on his tippy toes with his IV pole. He was fast, even as a little guy. In our infusion bay, he favored playing with a big car ramp. When he did sit, he was excited for a snack, a drink in his red tumbler and a show on his iPad. He was also a helper. He liked to push the start button on the blood pressure machine and fill his lab tubes with his blood after we collected it.”
Food became a diversion. Happy Meals. Avocado toast. Chicken and rice. Spicy pasta. Mac and cheese. Cheese boards. St. Mark Catholic School in Huntersville might consider adding a few specials to the cafeteria menu when Luke starts kindergarten in August.
Perhaps Luke coped so well because he was 2 1/2 when this all began – too young to understand. That could explain the smiles you see from so many children who walk through the St. Jude Affiliate Clinic doors, many with a favorite toy and glorious naivete. Or maybe it’s because Luke is an old soul, as his mother says, able “to dust himself off and move on.” At his final exam before ringing the bell, he asked his mom to leave the room. At age 5, he told her, he’s all grown up.
Luke’s mom and dad look back with gratitude for the love and care their son received.
“Going through cancer treatments is a very personal experience,” Megan Miller said. “When you are faced with trusting complete strangers and turning your child’s care over to them, it is a scary process. We not only had an incredible team at Novant Health, it felt like we gained a second family.”
‘Luke and the Lost Bell’
He came as a toddler and left as a preschooler.
Going forward, Bolen will see Luke once a month. St. Jude Affiliate Clinic at Novant Health Hemby Children’s Hospital will follow him for 10 years. The prognosis is excellent, with a 90% cure rate for this type of cancer, Bolen said.
Luke may be done, assuming his “ladies” at the clinic have returned all his trains. But his mom isn’t.
Accompanied by Luke and Brent, she traveled in February to Washington, on the behalf of the Alliance for Childhood Cancer. They lobbied North Carolina senators and representatives in support of legislation advancing pediatric research and treatment.
Luke raised his hands to speak at four of the five meetings. “My name is Luke,” he told lawmakers. “I have cancer, and it’s been a long journey, but I am ringing the bell very soon.” A week later, he did.
According to the American Childhood Cancer Organization, each year in the United States, 15,780
children and youth from birth to age 19 will be diagnosed with cancer.
Miller is writing an illustrated book for children ages 2 to 7. She’s titled it “Luke and the Lost
Bell.” It’s about a little boy who embarks on a journey to find the cherished bell. The adventure takes him through storms. He falls ill. But he finds it in the end. It will include a coloring book, children’s games and workbook for parents.
She’s determined to get it into the hands of every family that needs it.
The ultimately successful journey that Luke takes in his mom’s book?
It’s by train.
