Cypress Roed has been in her Grade 3 class at Harrison Hot Springs Elementary for a total of five days this year.
She has her homework she does at home, and goes into school when she can. But it’s not always easy for the bubbly, enthusiastic eight-year-old, who has been living without her kidneys since 2017.
Cypress has focal segmental glomerulosclerosis (FSGS), a disease that caused a scarring of her kidneys, preventing them from filtering protein from her urine. The disease required that Cypress’s kidneys be removed, and now she is on dialysis and is a frequent visitor at BC Children’s Hospital.
This year, her blood pressure has been extremely low, causing her to faint frequently and preventing her from participating in her favourite activity: swimming.
Dealing with her blood pressure has kept her from school for a number of days this year, but for the last two weeks, she has been home for a much better reason: on Oct. 24, Cypress will be heading back to the hospital for a kidney transplant.
“Everybody’s getting sick, and if she gets sick now she misses her transplant,” her mom Chantelle Deley explained.
Cypress has been on the deceased donor list for some time now, hoping that someone would be the perfect match. But at the end of September, Deley got a call from the Donor Exchange Program, a program that allows living donors to find matches for their organs if their preferred recipient can’t take it.
“When they got to the end of their list, there was somebody that didn’t have somebody to match up with,” Deley explained. That person decided to look at those waiting for a deceased donor, and found that Cypress was a perfect match.
“I felt guilty when we were on the deceased donor list, because you’re waiting for another family member of somebody to pass away so my child can survive,” Deley said. “But, when we got a call that there’s a live donor, it kind of filled that guilt with gratitude.”
“Before, I kept going to pack the hospital bags, and I would stop. I just couldn’t do it,” Deley continued. “And now they’re all packed and they’re ready to go.”
Deley and Cypress will be heading to Children’s Hospital for the Oct. 24 transplant. They’ll have to go early to give the medical staff time to prepare Cypress for the lengthy surgery, including making sure her blood pressure will stay high enough throughout the procedure.
Then, it will be two or three months in the hospital after the transplant to make sure that Cypress is doing well.
“It’ll be another Christmas out there,” Deley said, adding that the family has spent the last two Christmases in the hospital with Cypress.
“People look at the illness and think direct impacts it has with the illness itself,” she said. “They don’t realize the ripple effects and the trickles that an illness like this … has on families.
“When one person misses out … on certain things like activities and holidays, it affects the whole family.”
One of those ripple effects isn’t just Christmas in a hospital room — it’s also the financial burden on parents who need to stay home to take care of their kids.
That’s why Deley, at the advice of her friends, has set up a GoFundMe page.
“I have a hard time reaching out,” Deley said. “It’s pride. You want to do it yourself, take care of your kids yourself. But at this point, I cant. So I’m reaching out for support and help so I can focus on her.”
Deley currently has an $8,000 goal — enough to help pay for rent and utilities for the three months Cypress will be in Vancouver and the first month she comes home. Her friends have pitched in just over $1,000, which was used to pay for rent a few months ago when Deley and Cypress’s father split up.
“It was a bit emotional,” Deley said. “Before we got this call, I was thinking about putting off transplant so I could work.”
“It’s not an option now,” she continued. “It’s not something we can put off anymore … it’s something she needs.”
Deley hopes that people will do their best to not make assumptions about why the family is or isn’t doing certain things, and instead ask questions. Anyone interested in donating to the GoFundMe can visit gf.me/u/vtzu4f, or email Deley directly at firstname.lastname@example.org.
As for the transplant, Deley is hoping that it will bring a remission of the disease for Cypress.
“I’m just hoping for some stability, normal for our family, normal for her,” she said. “I’m trying to hope for the best, but in the back of my mind, you know the worst. You know the things that can happen. So you just try to prepare.”
Cypress, although nervous about the transplant, is more optimistic, even planning what she is going to do on Jan. 22.
“I’m going swimming for my birthday,” she said.