Childhood cancer awareness: A month for most, day to day for Brunswick family

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BRUNSWICK — On July 19, 2016, Ashley Arndt was changing her daughter Madison’s diaper when her fingers came across a hard lump in the baby’s belly.

Things happened quickly from there.

A visit to the pediatrician, then a trip to the emergency room in Portland. Lots of calls between doctors. At some point, someone mentioned an oncologist.

“That was where (Madison’s) journey started,” Arndt said last month, sitting in her living room on Jonathan Street.

It ended July 28 – a year and eight days after her initial diagnosis – when Madison completed her last round of treatment at the Barbara Bush Children’s Hospital in Portland. Her scans show no remaining signs of cancer, her mother said Monday.

On Aug. 21, Arndt attended a meeting where the Brunswick Town Council recognized September as National Childhood Cancer Awareness Month, shedding light on a disease that affects approximately 15,800 Americans under the age of 19 in 2014, according to the National Cancer Institute.

Councilors acknowledged how new treatments have increased the five-year survival rates for pediatric cases to nearly 80 percent, but also noted that only 4 percent of funding for cancer treatment and research goes toward children.

In Arndt’s opinion, that isn’t nearly enough.

She said it’s hard to find the right language when recalling the blurred sequence of events that led to Madison’s eventual diagnosis of stage 3, high-risk neuroblastoma – what Ashley described as “one of the most aggressive and sneaky childhood cancers.”

It’s harder, she said, to articulate what the past year has been like, while Madison, who will turn 3 in October, endured six rounds of chemotherapy, one surgery, radiation treatments, and, finally, five rounds of painful immunotherapy.

This week, she started preschool – a new chapter of her life that prompted Madison to nod excitedly as she played with her 18-month-old sister, Natalie, a week before her first day.

Still, her mother is hesitant to label Madison’s recovery a “transition” back into normalcy.

The majority of children who have suffered from cancer can expect additional health problems, she explained. Cases of neuroblastoma have a higher rate of relapse, she noted, and Madison will still need to go in for constant check-ups.

“Four percent isn’t enough for the kids,” Ashley said.

During the month of September, she hopes the Brunswick community will consider that small percentage of money. After all, she said, these are the patients who have their entire lives still ahead of them.

Road to recovery

For all the tragedy that has befallen her and her family, Madison’s personality is a check against that.

Outgoing, cheerful, and, according to her mother, wise beyond her years, Madison seemed like any other excited preschooler the morning of Aug. 25, which she and Natalie spent weaving around toys on the living room floor and playing with their grandmother, Haila Bryant.

Still, the experience of the last year hasn’t evaporated completely.

Toddling over to her mother’s chair, Madison held up one of her favorite toys: a stuffed bear named Buddy.

Unlike other bears, Buddy has a plastic tube stemming from the center of his plush belly. It’s exactly like the one Madison had inserted beneath the skin in her abdomen for the entire year, through which she received all of her medication over the course of her treatment, Ashley explained.

Pressing Buddy against the arm of her mother’s chair, she held a plastic toy hypodermic needle in her other hand and “injected” invisible medicine into the end of Buddy’s tube.

Buddy was a gift from Ashley’s sister, Emily, who lives in Topsham.

She, like many other family and friends, was one of the primary people the Arndts had “in our corner,” Ashley said, while she, Mitch and Madison made the countless trips to Portland for Madison’s treatment.

The Brunswick community has rallied around the Arndts from the start, through online fundraising, cooking them meals, and following Madison’s road to recovery on Facebook.

Ashley’s parents, who live in the house next door, where Ashley and Emily were raised, played a critical role, too: her mother quit her part-time job when Madison was diagnosed and volunteered to watch Natalie while the rest of the family made frequent trips to the hospital.

Once, last January, Bryant watched Natalie for 22 days; Madison and her parents had spent nearly the entire month in a Boston hospital after a stem cell transplant. The procedure allowed Madison to survive a hyper-intense round of chemotherapy, effectively replenishing her with a new immune system after the chemo “wiped everything out,” Ashley said.

That support meant the Arndts haven’t felt isolated throughout what has been a year of living “day-to-day,” Ashley said.

She, her sister Emily, and Madison relayed that gratitude after the Town Council recognized September as National Childhood Cancer Month.

“Pediatric cancer is underfunded and not acknowledged nearly enough,” Ashley told an emotional council. She thanked Brunswick for “going gold” – the color that signifies Childhood Cancer Awareness.

For that reason, September promises to be emotional for the Arndts , Ashley said, but hopefully, a little less focused on cancer than usual.

“Different phases, different feelings,” Ashley said. “Preschool is the next big thing.”

Callie Ferguson can be reached at 781-3661, ext. 100, or cferguson@theforecaster.net. Follow Callie on Twitter: @calliecferguson.

Edited 9/8 to correct the spelling of “Arndt”

Ashley Arndt, left, her sister Emily, and Ashley’s daughter Madison hold a copy of the Brunswick Town Council’s proclamation recognizing September as National Childhood Awareness Month. Madison, who will turn 3 in October, completed a year’s worth of treatment in July for high-risk, stage 3 neuroblastoma.

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Reporting on municipal, school, and community news in Brunswick and Harpswell. Bowdoin graduate, Wild Oats sandwich-eater. Callie can be reached at 207-781-3661 ext. 100, or cferguson@theforecaster.net.