On Friday, May 31, Cypress Roed attended a school a 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’s is wrong.”
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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.
| Cypress Roed, 8, who was the inspiration behind Harrison Hot Springs Elementary's Kidney Walk Friday (May 31). (Grace Kennedy/The Observer) |
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 has had 13 surgeries, including two to remove her kidneys. She has a catheter that allows her to be hooked up to a dialysis machine each night, and still goes to BC Children’s Hospital often. She can’t pee, because she no longer has the organs needed to create urine, and she needs to watch her fluid, salt, potassium and phosphate intake carefully.
Cypress is on the list for a kidney transplant, but there are worries that even if she gets it, the disease could return and scar her kidneys once again.
But, Roed added, they are 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.”
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Although Cypress doesn’t get to do everything the other kids can do, she still acts like a normal Grade 2 student, laughing with her friends in line and wanting her picture taken as often as possible. And according to her teacher, Heather Curle, she’s “very enthusiastic.”
“She’s not here a lot because of her illness, but when she’s here, she’s enthusiastic, wants to participate in everything,” Curle said. “On sports day, she tried all these new things that she’s never done before.”
According to her mom, that’s just who Cypress is.
“She’s always smiling. She’s always happy,” Roed said. “She’s faced with things in life that are unexpected, but she just keeps on going through it. She doesn’t give up.
“And I mean, that’s more than a lot of us adults do.”
On Friday, 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 Friday, 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.”
Correction: An earlier version of this story said the school had raised over $1,000. Although this was the number the school thought they had raised when they announced it at the assembly, a follow-up count showed they had raised slightly less than originally thought.
grace.kennedy@ahobserver.com
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