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Chasity and Rick Johnson, with Paige and her older sister Mylinda, in their "Praying for Paige" T-shirts. Submitted photo

Perham is 'Praying for Paige'

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Eight-year-old Paige Johnson heads to the Twin Cities this week for her 17th round of chemotherapy. She's been making the trip to the Minneapolis Children's Hospital every Friday as doctors try to shrink the desmoid tumor in her neck to make it more operable.

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After this week, she will have nine more weekly visits before they switch to every other week. All in all, Paige will have gone through a year of chemotherapy before her 10th birthday.

At an interview at their home, Paige and her parents, Rick and Chasity Johnson, shared the roller coaster that their lives have become since Paige was diagnosed with cancer.

It began on a Sunday evening at the end of January. Paige couldn't sleep that night because of a bump on her neck. Her parents thought it was just an excuse to sleep with Mom and Dad, but two days later they heard the words "Paige has cancer" from a specialist in Fargo.

Throughout a 19-day period through the end of January and beginning of February, the Johnson's rollercoaster ride included a myriad of tests (despite Paige's fear of needles) and days of waiting for accurate results. They made multiple trips to Fargo and Minneapolis, talking to four different doctors. The evenings were filled with prayers and worries, hoping for the best.

For one brief moment in February, the Johnsons were rejoicing - the results of a biopsy showed the tumor was benign, meaning it wouldn't spread throughout the body. However, their joy was short-lived as the facts about desmoid tumors were explained.

A desmoid tumor is an extremely rare form of cancer, affecting two out of every million people in the United States. With so few cases, knowledge of the best way to treat this cancer is limited.

But what the experts do know is pretty scary: Desmoid tumors tend to be invasive of surrounding tissues and organs, difficult to remove completely, highly reoccurring and fairly aggressive. And they are not always affected by chemotherapy and radiation.

As it was, Paige's 3 x 3.5-centimeter tumor was located just .5 inches from her spine. If the tumor were cut out, it would leave a divot in her neck, which would limit neck movement.

Even knowing there is only a 33 percent chance of shrinking Paige's tumor through chemotherapy, Paige and her family still head to Minneapolis every week in hopes of doing just that. The smaller the tumor, the more likely that doctors can remove it all while causing only minimal damage to any muscles it invaded.

So far, Paige's side effects of chemotherapy have been minimal - no hair loss, no bouts of sickness. She takes medicine every morning and night to limit some side effects, like arthritis.

Despite it all, Paige's outlook on life remains positive. By chance, a July's round of chemotherapy falls on her ninth birthday, but instead of being disappointed, she is excited.

"My doctor and nurse have to sing 'Happy Birthday' to me," Paige said.

Rick and Chasity have a harder time staying positive. Cancer is very prominent in Chasity's family. She lost a mom, an uncle, and both grandparents. The thought of her daughter having cancer is overwhelming, because she has never known a cancer survivor.

Despite the family history, Paige constantly assures her parents that she is going to be OK.

And so far, there are positive signs that she may be right - the tumor has already shrunk by a millimeter.

"Which isn't much, yet it's huge," said Chasity. "It means the chemo is working."

Looking back, Chasity remembers thinking that Paige's bump was a vertebra out of place and was fully expecting the doctor to tell her to watch it. But as she watched the look of concern cross Perham Health pediatrician Dr. Joshua Chapman's face, Chasity knew it was something worse.

Even though Paige is aware of her diagnosis, "still to this day, she doesn't know the severity of the situation," Chasity said.

Paige just wants to be a normal eight-year-old girl who builds Lego creations, makes beaded rings and bracelets, occasionally fights with her sister and sneaks off to school without combing her hair.

A sense of normalcy is something the Johnsons are really trying hard to keep. For example, about twice a month, they turn Paige's chemotherapy trip into a fun family weekend, visiting a zoo, museum or Valley Fair.

The Johnsons also look forward to a trip to Disney World, courtesy of Make-a-Wish foundation, sometime this fall or early winter.

And though Chasity has wished to take the cancer in Paige's place, Paige told her recently, "I'm glad it's not you, Mom. I'm glad it's me."

BENEFIT FOR THE FAMILY

What: Paige Johnson benefit and silent auction

Where: Prairie Wind Middle School, Perham

When: Sunday, June 24

11 a.m. to 2 p.m.

*Lunch will be provided with a free will offering.

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