Early in 2022, Ferris Backmeyer will turn five years of age.
She will have been on dialysis for almost four of those years.
Yes, she is in dire need of a kidney transplant. Ferris, who lives in Kamloops with her family, actually underwent a transplant early this year, but there were immediate difficulties and the ‘new’ kidney had to be removed.
“She’s spent the last 3.5 years living life on dialysis and the only hope we have for her to have better days is for her to have a successful kidney transplant,” her mother, Lindsey, wrote on Facebook this week. “Ferris has a lot of things stacked up against her, but we remain hopeful that there’s a kidney out there that will fit and work perfectly for her.”
It is incredibly hard to fathom a youngster soon to turn five who really has known nothing but dialysis for almost her entire life. She is hooked up to a cycler every single night, with the machine doing what healthy kidneys would do. Every single night. Think about that for a moment or two. Every single night.
“She has had a bit of a rough fall,” Lindsey wrote, “but somehow is still thriving developmentally. If you were to come and spend the afternoon playing with her or have been at the pool with us . . . you’d have no idea that she faces enormous battles every single day. That she wakes up violently ill every single morning, or that she’s already needed bloodwork drawn three times this month, is needing weekly Aranesp injections and then throw in the obligatory flu shot! She’s had a juicy cough since September and as of late has been really anemic. Not to mention what little growth we were seeing comes to a complete stop anytime she’s sick. It’s all feeling a little extra and fragile and shoe in mid-air about to drop!”
Being the parent of a child with Ferris’s health issues is like being on a roller-coaster, only you’re on the ride every single day.
“Our sweet girl . . . I look at her and it’s just impossible to find the right words to explain how things have been going,” Lindsey wrote. “Some days I feel like we are slaying it and, all in a moment it seems, completely overwhelmed.
“Our experience would sound unbelievable and incredibly dramatic. It’s unbelievable to me most of the time and I’m living it.”
What it means is that the family calendar is dominated by medical appointments of one kind or another.
“We had a stretch of weeks where we had some sort of appointment every single weekday. For weeks! The management of all things Ferris is no joke,” Lindsey added. “There’s the medical side where we’ve got this girl who is so fragile and requires intensive daily medical treatment with hopes of being transplanted and desperately trying to stay well enough to continue living our lives at home in Kamloops.”
Through it all, Lindsey and her husband, Pat, can’t lose sight of the fact that Ferris is excited about going to school next fall, just like her big sisters — Tavia and Ksenia. With Ferris, however, going to school isn’t as simple as showing up and dropping her off.
“There’s also all the therapies involved in having a kiddo like Ferris,” Lindsey explained. “She’s turning five in January which means school next September! There are a lot of people involved in helping us ensure she will be supported.
“Kidney disease has a hold on her so tight, but she also has significant visual disability as well as significant hearing loss. Both impact her life in huge ways. My hope is things stay calm enough that she gets to go to school like we are planning for. Better yet . . . a successful kidney transplant before then and her experience of school will be completely different.
“My heart is truly bursting with pride as I watch Ferris grow into the preschooler that she is! She loves to play!! She is so strongly influenced by her sisters and is sooooo sassy!! She loves going to school. She is so eager to go even with the roughest of dialysis hangovers.”
Oh my, this girl is one tough cookie. She really is.
“She teaches me big lessons about life, humanity, suffering,” Lindsey wrote. “She is a bright, shiny light of resilience and oblivion. She wouldn’t say she has a hard life at all. There’s so many things that she loves, and she wakes up most days asking, ‘What we gonna do today, Mommy?’ ”
In an earlier Facebook post, Lindsey summed up life with Ferris on one paragraph:
“She’s sick. You wouldn’t know it because she is amazingly resilient, but she deserves better than this. Gagging, wretching and vomiting every morning is normal once again for her. Her growth is incredibly poor. Her bone health is suffering. She doesn’t have the stamina to walk more than a block and relies on her stroller or being carried a lot of the time. She’s such a happy kid, though, and once she gets to know you or if she likes you, she’s hilarious . . . and smart and has a tonne of personality! She plays hard once she finds her feet each day. She wouldn’t say she has a bad life at all. I could very selfishly keep her like this forever if that were an option. If I knew she could live a long life like this . . . I’d very selfishly not list her and not do scary things. We love her so much and she deserves to experience life after a successful kidney transplant.”
Ferris now is on the deceased donor list and the national sensitivity donor list. Lindsey is hopeful that even more prospective donors will see her post on Facebook and that they will “flood the inbox of St. Paul’s living donor program. We are so grateful for every single person who has tried to help change her life. She deserves so much better than this and she doesn’t even know it.”
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If you are interested in being a living kidney donor, more information is available here:
Living Kidney Donor Program
St. Paul’s Hospital
6A Providence Building
1081 Burrard Street
Vancouver, BC V6Z 1Y6
Tel: 604-806-9027
Toll free: 1-877-922-9822
Fax: 604-806-9873
Email: donornurse@providencehealth.bc.ca
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Vancouver General Hospital Living Donor Program – Kidney
Gordon and Leslie Diamond Health Care Centre
Level 5, 2775 Laurel Street
Vancouver, BC V5Z 1M9
604-875-5182 or 1-855-875-5182
kidneydonornurse@vch.ca
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Or, for more information, visit right here.
www.transplant.bc.ca/health-info/organ-donation/living-donation
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The amazingly horrendous weather that parts of B.C. have experienced — and will see again this weekend — have led to all kinds of difficulties involving travel. For example, highways that had been reopened earlier this week will shut down on the weekend in anticipation of more wet weather that is expected.
This is especially hard on people with medical needs that have to be dealt with in Vancouver.
The Backmeyers are included in that group.
They were to have been at B.C. Children’s Hospital this week but the weather got in the way. They now are scheduled to be there early next month, but getting there might be a bit difficult unless they can fly.
The same holds true for John Casey of Kamloops, who had a kidney transplant at Vancouver General Hospital on May 31. He has an appointment there early in December and, with the highways closed, has gone ahead and made airline reservations.
John and his wife, Marlene, were regulars with the Kamloops Kidney Support Group before the pandemic brought things to a screeching halt. So was Vic Morin, who can be seen driving around Kamloops with a sign in the back window of his car pointing out that he needs a kidney.
Whenever my wife, Dorothy, is asked about her kidney transplant, she is quick to talk about the paired donor exchange program. It turns out that she isn’t alone. . . . Paulette Talerico of Golden, B.C., donated a kidney to a nephew, Pierre Pelletier of Vancouver, in August. These days, as Claire Palmer of the Golden Star reported, Paulette is encouraging others to become live donors. . . . “Hopefully more people will now because I didn’t realize how many people are actually in need of a kidney, it’s just unbelievable,” Paulette said. “I just want people to know that it’s not hard and it’s very rewarding — you could save someone’s life.” . . . Palmer’s story is right here.
While adding Paulette Talerico to my list of heroines, I also added Kennedie Maidment, a critical care nurse at Royal Inland Hospital in Kamloops. Her father, Tony, had a liver transplant a while back and Kennedie has long spoken out about her support of organ donation and transplantation. . . . Late last month, Kennedie tweeted this . . .
Want an easy win to feel great? Register to be an organ donor today. It will only #TakeTwoMinutes and you could save a life. Great deed and fuzzy feels without any hassle. #Register2Give taketwominutes.ca
TAKING NOTE 