FILE - Cypress Roed being carried by her mom Chantelle, while her dad Colin walked beside them during Harrison Hot Springs Elementary’s kidney walk on May 31, 2019. (Grace Kennedy/The Observer)

YEAR IN REVIEW 2019: Harrison Hot Springs Elementary rallies around student with kidney disease

The Observer is taking a look back at some of our top headlines of 2019

From community events to short term rentals and realities about opioids, housing affordability and homelessness, as well as film crews and a cultural hub proposal, there was no shortage of news in Agassiz, Harrison, and surrounding communities this year. In the days leading up to New Year 2020, the Observer is taking a look back at some of these headlines and more.

ORIGINAL STORY: ‘She doesn’t give up’: Harrison Hot Springs Elementary rallies around student with kidney disease

On May 31, Cypress Roed attended a school assembly that was all about her.

Sitting in the Harrison Hot Springs Elementary gymnasium, the eight-year-old student watched as her teacher explained to the school how kidneys work, why they’re important and why Cypress doesn’t have hers anymore.

It started in April 2017, with what Cypress’s mom Chantelle Roed thought was the flu. The then-six-year-old Cypress was kept at home, given lots of fluids and some Advil to help with her fever. But something wasn’t right.

On the fifth day of her flu, Cypress’s body ballooned up — Roed remembers her being five times her normal size — and the family went to the emergency room at Surrey Memorial Hospital.

The days that followed were “scary, but frustrating,” Roed said.

“They just chalk it up to regular flu,” she remembered. “‘Your child’s fine, go home.’ And you say no.

“And they go, ‘Why can’t you take her home?’ Well, because something is wrong.”

RELATED: Organ donation saved record 502 lives last year in B.C.

Soon, it became clear that Cypress’s kidneys weren’t functioning properly. Her kidneys, damaged by scarring on their filters, were letting too much protein out of her blood and into her urine. As a result, water was rushing into her tissues causing her body to swell.

“I think the doctor had to tell me three or four times, because you’re hearing but you’re not quite hearing,” Roed said. “You’re hearing a bunch of words, but nothing is making sense.”

Cypress was diagnosed with focal segmental glomerulosclerosis (FSGS), which caused nephrotic syndrome — in short, scarring of the kidneys that damages the organ’s filters, allowing protein to leak out of the blood and into the urine. The cause was unknown, possibly genetic.

After her diagnosis on April 4, Cypress was admitted to hospital and given drugs to help her body get rid of the excess fluid in her tissues — albumin and lasix — as well as steroids, immuno-suppressants and other medications.

“It’s hard for kids,” Roed remembered. “You’re dealing with an illness, but then you’re dealing with medications that are causing your kids to be ill.

“What do you do? You don’t really get a choice.”

For more than half a year, Cypress was sick, unable to eat. In Grade 1, she was only able to attend eight half days of school. She got the flu and developed sepsis, a potentially fatal immune response to an infection that gets into the bloodstream. Then, they found out her kidneys needed to come out.

Since April 2017, Cypress had 13 surgeries, including two to remove her kidneys. She had a catheter that allowed her to be hooked up to a dialysis machine each night, and still went to BC Children’s Hospital often. She couldn’t pee, because she no longer had the organs needed to create urine, and she needed to watch her fluid, salt, potassium and phosphate intake carefully.

While Cypress was on the list for a kidney transplant, there were worries that even if she got it, the disease could return and scar her kidneys once again.

But, Roed said, they were hopeful.

“We’re hopeful that she gets a new kidney. Hopeful that the disease doesn’t take over fast and she can live somewhat,” Roed said. “We’re hoping that she can live as normal of a life as possible, for as long as possible, before we’re faced with starting again.”

RELATED: ‘Don’t worry sis, my kidney’s your kidney’: B.C. women share transplant journey

On May 31, Harrison Hot Springs Elementary celebrated Cypress with an assembly and kidney walk around the Miami River. It was also the culmination of a week of fundraising by the school.

Over the previous five days, students had brought in coins to contribute to the Kidney Foundation of Canada, which researches kidney disease and provides support for families struggling with the aftermath of kidney disease. By May 31, the school had raised $950, and would be donating it through Cypress’s team page with the foundation.

“It makes her feel good,” Roed said about her daughter’s school helping to raise money for the foundation. Cypress has done walks to raise money in the past, she said, and having that support from the school makes a difference for her.

“She knows it goes to help other kids like her,” Roed said. “So it kind of makes her feel proud and know that she’s not alone, she’s not the only one.”

RELATED: Harrison girl to get long-awaited kidney transplant



grace.kennedy@ahobserver.com

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