BRUNSWICK, Maine — Six weeks ago, Ashley Arndt felt a lump on her daughter’s belly as she changed her diaper.
“I just kind of rubbed my hands across her belly just the right way, and I could feel it,” Ashley said Monday of 23-month-old Madison, asleep in the next room in between bouts of vomiting.
Their pediatrician sent Madison for an ultrasound, where they found a 2-inch mass. Her doctor told them not to jump to conclusions and scheduled tests, but Ashley said something didn’t feel right. Ashley, 26, and her husband, Mitchell Arndt, 36, took Madison to Maine Medical Center first thing the next morning, and she was admitted to the Barbara Bush Children’s Hospital that day.
“He told us he was 90 percent sure she had neuroblastoma,” Ashley said. Later that week tests confirmed the official diagnosis: Stage III high-risk neuroblastoma, a type of cancer that starts in very early forms of nerve cells of an embryo or fetus.
Neuroblastoma is by far the most common cancer in children younger than 1 year old and accounts for about 6 percent of all cancers in children, according to the American Cancer Society. About 700 new cases are diagnosed each year in the United States.
Last Friday, Madison was released from the hospital after her second of six scheduled rounds of chemotherapy. On Monday, the family will travel to Children’s Hospital Boston, where doctors will harvest Madison’s stem cells, to be re-transplanted following surgery and more “very intense chemotherapy” in several months.
After that will come radiation to the area where the tumor was — “We hope,” Ashley said. Finally, she’ll undergo antibody therapy.
On Monday, Ashley watched her daughter closely for signs of a fever that could attack her severely compromised immune system at any time. Following the first bout of chemo, she was hospitalized for a fever — something Ashley hopes to avoid.
“She hasn’t had a fever, thank god, but she’s not even close to herself,” she said. “It’s really heartbreaking to watch this.”
“It’s the most intense of childhood cancers,” she said. “And with the longest treatment. In the last 10 years, treatments really came a long way, but we have an incredibly long road until she is cancer-free.”
That road includes seemingly nonstop trips to Barbara Bush Children’s Hospital, trips to Boston lasting a day, several days and, during Madison’s surgery, four to six weeks.
The family, including 6-month-old Natalie, will stay in Boston as long as two months while Madison undergoes surgery, chemotherapy and a stem-cell transplant.
Jessica Rubashkin, a nurse practitioner at Mid Coast Pediatrics, knew Madison and her family from the practice — and because their shared love of LuLaRoe, a brand of clothing that Rubashkin sells. Rubashkin was heartbroken to hear of Madison’s diagnosis.
The Arndts do have medical insurance, but Rubashkin knew Mitchell, a carpenter, would miss as much as two months of work when Madison is being treated in Boston. And the trips back and forth, parking, meals and other expenses add up quickly.
Eager to help the Arndts any way she could, Rubashkin organized an online “multi-consultant” sale from noon Saturday to 6 p.m. Sunday to raise money to help defray the family’s expenses.
Consultants will donate the cash they typically receive from each sale — $4 for a pair of leggings and $8 for dresses, shirts and skirts. Added to the $1.50 to $3 LuLaRoe will donate per item, and $5 to $10 per item sold will go to offset the Arndts’ expenses.
“The doctors are confident she will beat this,” Ashley said Monday. “Neuroblastoma is aggressive, but it’s also treatable. They’re confident she will make a full recovery. They said from feeling her belly the tumor is already responding to the chemotherapy.”
To join the online sale, visit Rubashkin’s LuLaRoe Facebook page.
To donate directly, visit the GoFundMe page, organized by Madison’s aunt.
To read more about Madison’s story, visit the Facebook page Madison’s Road to Recovery.