Wings helped youth's long hospital stay

When a child is diagnosed with cancer, it dominates the lives of everyone involved. 

For Pam Barberis, her life was thrown into upheaval when her 6-year-old son Evan was diagnosed with Philadelphia chromosome-positive acute lymphoblastic leukemia. 

Evan was coming down with too many fevers and had pain radiating into his legs. It took some time, but he was ultimately diagnosed with the disease.

He had to go to Spokane for treatment. This meant Pam, then a baker and kitchen manager at Montana Coffee Traders, had to quit her job and move to Spokane for the duration of the treatment: 10 months. Her husband and Evan’s father, Joe, stayed in the family home in Whitefish.

The enormous financial burden of supporting two residences on one paycheck might have been too much for the family to bear were it not for help from the community and philanthropic organizations.

“One of our biggest challenges was that we had to move,” Pam said. “There was a Ronald McDonald House at the hospital, but Evan’s cancer was prone to infection, so that wasn’t really an option for us.”

An acquaintance found out about the Barberis’ situation and called Pam to tell her about Wings Regional Cancer Support, a not-for-profit organization which provides financial assistance to Flathead, Lake and Lincoln county families fighting cancer.

The annual radiothon fundraiser for Wings is this Thursday and Friday.

For Evan and Pam Barberis, Wings provided enough money — $4,200 — to rent an apartment in Spokane for 10 months.

“They were even willing to pay for travel costs, but we declined because we just felt so grateful,” Barberis said. “Having that apartment made a lot of difference. It really allowed Evan to get better.”

Wings, founded in 1995, has served hundreds of  patients and given more than $1.85 million in grants since the inception. In 2014, Wings assisted 156 patients and gave $152,706 in grants.

For Evan, now 11 and cancer-free, the memories of that time are foggy. 

“It was not fun,” he said. “I was mostly just stuck in a hospital bed.”

The uncommon form of cancer Evan was diagnosed with, often shortened to Ph+ ALL, is a chromosomal cancer in which part of one chromosome breaks off and attaches to another. He will live his whole life with the risk of developing cancer again, but for now he is clear.

The experience was taxing not only for Evan, but also for his parents. Pam describes that experience as “the biggest challenge I’ve ever faced.” Joe would try to come every weekend to visit his family but weather challenges sometimes kept them apart.

Evan had a port installed near his collarbone, and had to take steroids and be hooked up to a pump he called “the robot.”

“I can say now it was terrifying,” Pam said. “I find it interesting how little of the experience he remembers, but that’s probably a good thing.”

Evan came home from his hospital stay and went back to school without his hair. He had missed nearly all of first grade, so he learned from his mother, grandmother and a tutor provided by the hospital while splitting time between the hospital and the Spokane apartment.

One of the worst parts of his hospital stay was the loss of his beloved skiing. Evan had first strapped skis on the slopes when he was just 2.

“It was mostly a day of drinking hot chocolate,” Pam said. “After a short day on the bunny slope, depending on his mood.”

Evan maintains his love of skiing, competing last weekend in a Nordic ski relay race at the Whitefish Golf Course. He spends two days a week after school practicing cross-country skiing and heads with his family to Whitefish Mountain Resort just about every weekend in season.

“I prefer downhill just because it’s more exciting,” he said. “I like the jumps.”

Besides hitting the slopes, Evan loves science, even performing his own science experiments at home.

Currently? He is working with something called “potato mud” and quinine from tonic water, hoping to create a sort of blacklight putty. During treatment, he was treated to an extensive tour of the hospital’s massive laboratories.

“Sometimes I do accidental experiments, too,” Evan said. “I left some food in my lunch box and put it in my cubby and forgot about it. Then I opened it up a while later and it smelled super bad so I brought it home and washed it out so my mom wouldn’t know.”

Pam’s knowing smile said she knew everything. She is a mom, after all.

But looming over everything is the acute lymphoblastic leukemia that could rise again at any time.

“He’s constantly getting checked,” Pam said. “He’s definitely in remission, but Wings isn’t completely off the hook just yet.”

Wings will hold its annual radiothon on Thursday and Friday, Jan. 15 and 16 at the Kalispell Sportsman & Ski Haus from 6 a.m. to 6 p.m. both days. 

People also can donate to Wings through its website, www.wingsnwmontana.com.

Reporter Ryan Murray may be reached at 758-4436 or by email at rmurray@dailyinterlake.com.