Family learns to face cancer together

During her first week of sixth grade, Sophia Porter learned the new halls at Kalispell Middle School that she would walk for the next three years.

Then, she cleaned her desk and headed home to pack for a family trip to Seattle, where she will have surgery this week to remove the cancer that had been slowly growing along her spine.

Five months before, Heather Porter was at work when the doctor called to say her daughter’s MRI images looked strange. It took a biopsy in Seattle to learn the odd knob near Sophia’s spine was chordoma — a rare slow-growing sarcoma cancer.

“It’s the weirdest thing because life seems normal, but then you’re saying, ‘My kid has cancer’ as people stare at you,” Heather said. “You kind of learn how to live upside-down. And you start to realize there’s this whole other world of people living upside-down, too.”

Some 10,380 children in the United States under the age of 15 will be diagnosed with cancer this year, according to the National Cancer Institute. While that makes up less than 1 percent of all cancers diagnosed each year, the rate of childhood cancer is steadily increasing. In 1975, about 13 children per 100,000 were diagnosed with cancer. As of 2012, that rate had risen to roughly 18 per 100,000.

Because of major treatment advances, more than 80 percent of children with cancer now survive five years or more. That’s an increase since the mid-1970s, when the five-year survival rate was about 58 percent.

Heather Porter said while medical improvements help her breathe easier, there was no guideline for how she should tell Sophia she couldn’t take hunter safety because she had to go through radiation treatments. The Porters’ summer plans shifted.

For Heather and Sophia it meant six weeks in Seattle experiencing how proton beam radiation affects a pre-teen’s body. For Sophia’s dad and sister, it meant operating without half their family. But for each person, it meant preparing for the surgery they will face Wednesday, Sept. 7. During that six weeks, Sophia turned 12 in between radiation treatments, Heather and her husband celebrated their 18th anniversary and the family mourned the death of their grandmother.

“Even while being apart, we share the same experience. In the same way, we’ve decided to take this as a family — it’s not just one of us dealing with cancer, we all are,” Heather said. “And we keep finding families who have done the same. It’s like a club you never wanted to be part of.”

To help keep that club closer to home, this summer Kalispell Regional Medical Center announced plans to build a pediatric center that aims to treat children in need of intensive care. It’s part of the hospital’s effort to bring pediatric subspecialties — from invasive surgery to radiation treatments — under one roof in Montana.

Hospital officials plan to have a fully operational pediatric intensive-care unit temporarily housed in old hospital quarters running sometime this fall so that in the future, families don’t have to travel so far for treatment.

SURROUNDED by her pet chickens and rabbit in her backyard, Sophia recited the facts of her rare bone cancer she had memorized between school and play.

She twisted a few strands of her recently dyed purple hair — her parents let her dye it every year to celebrate summer — and laughed about her last week of fifth grade in the spring, when she attended a fundraiser her classmates held to help pay for the radiation treatment that would consume her summer vacation.

“There was a kid talking to me and my sister and he asked who the money was going to. He was so surprised when I said, ‘Me,’” Sophia said. “But I understood — I didn’t know kids got cancer.”

Her dad sat on the back porch, out of ear’s reach but intently watching her talk. Her mom and sister made cinnamon rolls in the kitchen.

Her mom said she talks about cancer with Sophia the same way she would talk about boys, school or making the right choices.

“Cancer’s scary — and radiation is uncomfortable. But there’s always going to be uncomfortable subjects. I want her to be able to trust that her dad and I, we’re reliable,” Heather said. ”So we’ve talked about it all.”

She said there’s a 15 to 20 percent chance Sophia will be paralyzed and a 78 to 80 percent chance this treatment plan will be successful.

“So we’re looking at a 20 percent chance that it won’t be successful, and the cancer will continue to be there,” Heather said. “Which would mean chemotherapy, which is less successful and harder on the body.”

Heather said while her family thinks it’s important to know the statistics, they don’t focus on them.

“I feel like for the most part, our family as a whole, we’ve pretty much learned how to breathe again. We accept what we’re dealing with, we understand what he have to do and we’re pretty much all on board and OK.”

To help support Sophia’s cancer treatment bills, go to Sophia Porter’s Medical Fund at gofundme.com or drop off donations at the Whitefish Credit Union.

Reporter Katheryn Houghton may be reached at 758-4436 or by email at khoughton@dailyinterlake.com.