Ferris and Lindsey Backmeyer: A mother’s love is everything when her child continues to fight . . .

If you’re a regular here, you will know that we have been paying particular attention to Ferris Backmeyer and her family, who are from Kamloops.

That’s because her mother, Lindsey, has been keeping friends and family (and us) updated on Ferris via Facebook.

Lindsey has poured out a mother’s heart in her posts, refusing to hold anything back. She has written with angst and anger and pain and, yes, even some humour as Ferris, at just three years of age, continues to travel a road that hopefully will end with a kidney transplant.

The outpouring of emotions is understandable as Lindsey helps guide husband Pat and Ferris’s two sisters — Tavia and Ksenia — through all of this.

The older girls — the “bigs” as Lindsey refers to them — were in Vancouver for three weeks before returning home with Lindsey’s mother after the weekend.

Lindsey and Pat now are completely focused on getting Ferris through this rough patch, helping her get well enough to go back on the transplant list, and back home. But the last bit hasn’t been an easy stretch.

For example, here’s a bit from a Facebook post by Lindsey on July 20 after doctors implanted a central dialysis line:

“Ferris had complications intraoperatively. The line was technically difficult because of her anatomy and while they were placing it they irritated her heart. Her higher potassium levels lower her threshold for things like that and she went into a PEA arrest. She had roughly 3 minutes of CPR and 1 dose of epinephrine when they got her pulse back. She was hypoxemic and difficult to ventilate for a bit afterwards. They were confident that it was noticed very quickly and that she responded fairly quickly. Thankfully they were able to extubate her and pull her art line before going to the dialysis unit.”

One day later, Lindsey wrote:

IV
Despite all that she has been through, Ferris Backmeyer, 3, can still find a smile for the camera. (Photo: Lindsey Backmeyer/Facebook)

“As for today . . . she’s super low key but perked up by evening and wanted to go to the beach and build sand castles . . . so that’s what we did:) she spent about 5 minutes total on her feet today but that’s okay!! Lots of couch time. She’s sore and much happier with Tylenol on board. I’d be lying if I am not super anxious/protective over her right now. She has little pen crosses on her pulses and blood in her hair that I rinsed off into a paper towel. A bath was not a today thing. She has no idea what a big day yesterday was, and I don’t think I’ll ever forget it.”

Last Thursday, Ferris had more surgery as a peritoneal dialysis (PD) catheter was implanted. She had been doing PD at home when fungal peritonitis brought it all crashing down. That resulted in this most-recent trek to B.C. Children’s Hospital and all that has followed.

After Thursday was over, Lindsey, her emotions on her sleeve by now, wrote: “It was a super hard, inpatient kinda day.”

A day later, there were more complications, this time with cell counts.

“The question of when she could get listed again (for a transplant) comes up and at this point we just don’t know,” Lindsey wrote. “I’d be lying if I said I wasn’t shattered by today’s news.

“My heart is breaking for Ferris. She normally takes all the medical stuff in stride and right now she’s really struggling. I call it a trauma cry because it’s one I have hardly ever seen before and she looks like she’s being tortured. With things she used to handle like a champ. As she gets older navigating her mental health is so much more challenging and so ridiculously important!”

The next day, doctors had to put in an IV line, which brought this response from Lindsey:

“Oh man . . . after posting how she’s not doing so well coping . . first time ever IV placement without tears! This is her 5th IV this go-round and she’s not left with a lot of sites. She was so ridiculously cute and compliant for the nurse and she was friggin amazing with Ferris! Decent end to a not so awesome day!!”

And now the Backmeyers are playing something of a waiting game. As Lindsey wrote on Monday:

Couch
Ferris likes the couch a whole lot more than a hospital bed. (Photo: Lindsey Backmeyer/Facebook)

“So far the cultures haven’t grown anything! They have stopped the antibiotics. Gonna repeat a sample on Wednesday and if cell counts have trended down will likely drop the antifungals (she’s been on fluconazole since we got down here a month ago). Then it will be a bit of a wait-and-see. I think they will go ahead and start using the catheter as planned. Best case scenario . . . home in a couple of weeks!! Trying so desperately to remain optimistic!!

“Ferris wants nothing to do with a hospital bed after she gets out of it in the morning. All bad things start with that bed . . . I can’t really blame her! She’s passed out on the couch the last 3 nights. Hoping for a super uneventful week!!”

BTW, Lindsey and Pat celebrated their 16th anniversary last week.

“Happy Anniversary to the most incredible momma bear,” Pat wrote, above a photo of a snarling grizzly bear. On the photo, it read: “Fate whispers to the warrior, ‘You cannot withstand the storm.’ And the mama bear whispers back, ‘I am the storm.’ ”

——

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


Here’s the deal on the above tweet. . . . It’s the story of Carrie, who has had a heart transplant and now has met the family of her donor. . . . From the Provincial Health Services Authority: “Filmed in February 2020, Carrie finally got to hug the family of Darcy, her organ donor. After 17 years of writing letters to each other, she was met with open arms by his mother Marie and brother Daryl in a first ever face-to-face meeting.” . . . The video is right here.





Sunday a day of freedom for Ferris . . . Zach needs a kidney, too . . . Want to help? Please contact Living Kidney Donor Program

The Backmeyers have found some freedom in Vancouver with Ferris being treated as an outpatient, at least for now.

Ferris, 3, slept on a couch on Friday night, a rarity for a child who has been on dialysis since she was 14 months old. Today (Sunday), she won’t have to dialyze and I really would love to know what will be going through her mind as she spends one entire day without having to hook up to a cycler for peritoneal dialysis (PD) or a hemodialysis machine.

FerrisSwing
Ferris spent some time doing kid things the other day in Vancouver. (Photo: Lindsey Backmeyer/Facebook)

The Backmeyers are from Kamloops. Ferris is in need of a kidney transplant. She had been doing PD at home, but she got hit with an infection, so Mom and Dad (Lindsey and Pat) had to take her to B.C. Children’s Hospital a week ago. There, doctors removed her PD catheter and transitioned her to hemodialysis, at least for the short term.

Lindsey informed Facebook followers early Saturday that they will take Ferris to BCCH on Monday, Wednesday, Friday and Saturday for hemo, with each run taking about three hours. Including pre- and post-, it takes about 3.5 hours. That is quite a change for a little girl who is used to being hooked up to a cycler for about 12 hours a night.

“Still gives us a decent amount of time out,” Lindsey wrote.

She added that they spent some time out Friday evening “and I think it’s safe to say we are all more comfy here! Now if it would only stop raining!!!!”

They almost certainly will be in Vancouver for another few weeks.

“The most current plan is to admit her during the first week in August and reinsert her PD catheter,” Lindsey wrote. “If it goes well we could be home mid-August. While it’s not a set-in-stone plan . . . it’s the one we have for now!”

On Thursday, Lindsey had written that “Ferris is slowly feeling better each day. She hasn’t had any Tylenol since noon (Wednesday) and has only cried a couple times in pain. . . .

“She’s still really low on physical energy but she continues to eat! We are back to full feeds and she’s still eating a ton. She’s eaten half a chicken in three days. . . . She’s constantly yelling for different foods . . .”

This will be a big week for Ferris as her big sisters are scheduled to arrive on Wednesday.

According to Lindsey: “Ferris asks about them a lot. They worry about Ferris and us when we are down here. It’ll be better for everyone if we are together. We had already discussed the possibility of spending the summer here if a transplant were to happen. Kinda preparing them that all our summer camping plans might be derailed. So this isn’t totally unexpected.

“The realization that we are here for awhile has been a huge pill to swallow. In fact I haven’t really yet. I’m still looking at how big it is!! For now, we plan for next week and hope that Ferris gets a bit stronger each day!”

——

Meanwhile, Zach Tremblay, now 17, continues to trek from his home in Robson, B.C., to Trail to do dialysis as he waits and hopes for a kidney transplant.

You bet that Zach can relate to what Ferris is going through, because he was transitioned from PD to hemo early this year.

Zach16

——

If you are at all interested in being a living kidney donor, contact the Living Kidney Donor Program at St. Paul’s Hospital in Vancouver. You don’t have to make an immediate commitment, but the folks there are able to prove you with more information and answer any questions you may have.

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


There are a lot of tests involved in finding out whether a potential kidney donor and recipient are a match. Three of those are blood tests — blood typing, tissue typing and cross-matching. . . . There’s a lot more on that right here.





Zach’s odds have gotten better, but he still needs a donor. Interested?

Our annual Kidney Walk has been turned into a virtual event that will be held on June 7.

Had it gone ahead on schedule in Kamloops on Sept. 23, Dorothy would have taken part for a seventh straight year since her transplant. Instead, she is working at fund-raising for the virtual event. This is her way of giving back because she has been there and knows how many kidney patients this money helps support.

If you like, you are able to support Dorothy’s effort right here.


Zach16

 

Zach Tremblay’s transition to doing hemodialysis at Kootenay Boundary Regional Hospital in Trail, B.C., has been a success, his mother, Jana, reports.

The Tremblays live in Robson, B.C., which is located 33 km north of Trail.

Zach has four runs per week, each of them three to four hours in length.

“We drive him over, come home and go back later to get him . . . 16 trips back and forth a week,” Jana writes. “The Trail unit is full of lovely people and they have been exceptional in welcoming him/us and making it a less stressful transition.

“I am not allowed in with him because of the virus, so he has to go alone. He has his devices and snacks and off he goes.

“Not gonna lie . . . my eyes were full of tears and the lump in my throat was huge on Day 1, but has since shrunk to a pea size, with no tears now, every time we drop him off. He just makes us proud.”

Zach recently spent four months in Vancouver with Jana, as he went from peritoneal dialysis to hemo. And, of course, the search for a kidney for him continues.

On that front, Jana, reports . . .

“Now for the good news! Yes!! GOOD NEWS that we have been cradling and holding onto just a little while, because it just felt good for a change and we wanted to just enjoy it a while.

“A few weeks ago, Zach and I had a telehealth phone conference with his transplant doctor in Vancouver, Dr. Tom (Blydt-Hansen). Zach’s antibodies have come down. It doesn’t always happen, but it has and we will take it and feel blessed.

“This means the possibility of a match has become much bigger. Each time they come down, his donor pool widens — it’s really exciting biology stuff.”

What this means is that the odds of there being a match for him have improved considerably. Prior to the antibodies coming down, one person in 7,000 tested donors may have matched. Now it’s five in 1,000.

Jana adds: “They are now going to revisit anyone previously tested to see if they have become more compatible. They will also start testing new candidates, and continue with the paired exchange testings.

“If you’ve ever considered getting tested, please think about it now and help save our boy. His grad year is coming up and how wonderful would it be for this to be behind us and for him to just enjoy it.”


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


Leonard Pitts, a columnist with the Tampa Bay Times, sat down at his keyboard the other day and tapped out a column that really resonated with me.

Here are the first three paragraphs:

“Someday, I’m going to die.

“This, I grudgingly accept. I have no idea how it’s going to happen. Maybe I will die of having a tree fall on me, of eating tainted shellfish, or of being struck by lightning. But this much I guarantee. I will not die of having wagered my life that TV carnival barkers, political halfwits and MAGA-hat-wearing geniuses know more than experts with R.N.s, M.D.s, and Ph.D.s after their names.

“In other words, I will not die of stupid.”

The complete column is right here.