The latest chapter in the lives of the Backmeyer family has ended and they are together again, all five of them, in their Kamloops home.
It was in late June when Ferris, 3, who had been doing peritoneal dialysis (PD) since she was 14 months old, was diagnosed with fungal peritonitis. That meant, in short, another trip to B.C. Children’s Hospital in Vancouver, the removal of the PD catheter, a brief switch to hemodialysis, and then a move back to PD, all in the span of about six weeks.
Ferris and her parents, Lindsey and Pat, were in Vancouver the whole time, while older sisters Ksenia and Tavia (aka The Bigs) got in a three-week visit.
Upon returning home, Lindsey, as she has done throughout, turned to Facebook and bared her soul. (We can only hope that folks in the renal community have been following Lindsey’s writings, because her musings shouldn’t be lost to the ravages of time; rather, they should be edited and packaged as a support guide to parents who find themselves in similar circumstances.)
In her latest entry, Lindsey touches more on The Bigs than she has in the past and, in doing so, provides a real look at the impact a situation like this can have on the family unit.
“There really aren’t enough words to say how good it feels to be home and together as a family,” she writes. “Our final day went so well! Anesthesia used (Ferris’s) PD cath to put her to sleep and then placed the IV. There were no tears with the procedure and we were back in Kamloops by 5 p.m.
“I got to see the bigs! Oh how I missed these big girls so incredibly much!! Ugh let me tell ya . . . we’ve spent 30 days apart this summer and it was really just much too long. It’s not how we’ve done things before but then the world just isn’t the same as it was the times before either.”
In April 2018, Michael Potestio of Kamloops This Week wrote: “A few weeks after she was born, Ferris . . . was informally diagnosed with Mainzer-Saldino syndrome, a disorder characterized by kidney disease, vision loss and misshapen bones.
“The disease is caused by gene mutations and is so rare there are only about 20 known cases, according to the U.S. National Library of Medicine.”
That diagnosis later was confirmed, and Ferris’s kidneys also were found to be failing.
The geneticist who made the diagnosis told Lindsey and Pat “that we would be responsible for the books our older children write as adults.”
“At the time,” Lindsey writes, “the girls were 3 and 5 years old. I’ve had people tell me ‘Oh, that’s really harsh,’ or think it’s inappropriate. But the reality is that he really hit the nail on the head.
As Lindsey points out, Ksenia and Tavis are growing up “with a sister who is medically fragile.”
As a result, “they are comfortable and at home at places like (B.C. Children’s Hospital and Ronald McDonald House).”
Lindsey also points out that their Kamloops home includes “a kitchen full of medical supplies, a sister who is tube fed and is on dialysis in their parents’ bedroom and gets needles by mom and dad, and nurses in their home on a regular basis. I mean, the perfect making of some really good books if you do ask me!
“But man . . . the dynamic is forever changing. They are older now and the stakes feel really high.”
After being at home for two days, Lindsey says she is “pretty confident the girls will look back on this one as the summer that Ferris was sick but they got to do lots of fun things.”
That included “a couple weeks at the lake with grandma and papa, sleepovers and camping with friends, and three weeks in Vancouver with us.”
Still, Lindsey recognizes that it just isn’t that simple.
“I can tell,” she writes, “that overall they had a really good summer but they also experienced a whole lot of feelings. Big ones. In chatting with them I can see such maturity and reasonable understanding of our situation.
“There isn’t resentment, just love and worry for Ferris. They feel loved by everyone who spent time with them. They will be amazing humans and hopefully write amazing books one day.”
At the same time, Ferris is back home and she knows it.
“Ferris is a completely different kid than she was a few days ago,” Lindsey writes. “She’s so happy to be home. She’s walking all over. She sure missed her ice cream truck and play kitchen. She is a different kid when her sisters are around in the best way possible. So yeah, home.”
And just like that it’s the middle of August and, in the Backmeyer family, Lindsey writes, it’s “the end to another chapter in the book I don’t have time to write.”
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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
TAKING NOTE 