Over the next few weeks, staff and students at Tumbler Ridge Elementary will be raising funds to help a grade two student with focal segmental glomerulosclerosis (FSGS) who was recently taken to Children’s Hospital in Vancouver where both her kidney’s were removed.
According to mom Stacey Fowlow, On October 5, 2017 at the age of 22 months, Braelyn was diagnosed with Nephrotic Syndrome, which isn’t so much a disease, but a collection of symptoms that point to scarring of the glomeruli in the kidney, which are the tiny blood vessels where waste is filtered out of the blood.
“They treated it with the basic protocol that they would with any kid,” says Fowlow. “Things like high dose steroids, etc. She was hospitalized numerous times every year to get treatment.”
But despite the treatments, things just weren’t getting better. “They changed medications a number of times. They tried probably five or six different things to try and bring her into remission.”
There were a few glimmers of hope, as treatment seemed to be working, but it never lasted. “They ended up doing kidney biopsies to try and determine what was causing the nephrotic syndrome. Both times the results came back as Minimal Change Disease, which is what you would hope for.”
But, she says, because Braelyn wasn’t responding to the medication, they decided it was probably FSGS. “That is the worst form of nephrotic syndrome. It’s a lot harder to treat.”
In February, the family went down BC Children’s Hospital to get a Hemodialysis (HD) line put in “She was in stage four kidney failure, which is a result of the nephrotic syndrome. Once you have nephrotic syndrome if you can’t treat it, it slowly starts to scar your kidneys, which results in kidney failure.”
The family was in Vancouver from February to April doing HD in hospital until she could start peritoneal dialysis, a form of dialysis which attaches a catheter to the lining of the stomach, which—unlike HD—the family could do at home.
But the process—which involves being hooked up to a dialysis machine for four hours—wasn’t working as well as hoped. The family went back down to BC Children’s hospital on October 21. “An x-ray showed that the catheter in her stomach had actually flipped and it was up in her lungs. So she had to do a surgery for that.”
But, says mom, they also decided to remove both her kidneys, which had failed completely. “So now she’s back on HD until her stomach heals from that.”
One of the side effects of having no kidneys? She doesn’t need to pee.
Braelyn is in week three of her four week recovery from the surgery, and the family is meeting with the transplant team on December 1 to be put on the waiting list for a kidney. Fowlow says it’s already been six months of appointments with everyone from cardiologists to neurologists to urologists to get the okay to be put on the list. “She is now on the list to receive a kidney. If she were to get a kidney, the disease can come back, but there are procedures they can do while she’s in the recovery to minimize that risk.”
Once she’s on the list, it will still be another three or four months before she will be approved, and then … well, who knows how long it will be until a kidney is available, so for now, it is a waiting game.
“As of right now she is stable and she’s healing from having her kidneys removed. She does dialysis three days a week to clean her blood.”
Even with a new kidney, it won’t be a permanent solution. “It’s not a cure,” says Fowlow. “They say a kidney will last for a maximum of 15 years before she’ll need another. It’s going to be a lifetime thing for her. It’s not a cure. It’s just she’ll get a better quality of life. It will get her off the machines and give her the opportunity to be a normal kid. The hope is once she has the transplant, her life will go back to mostly normal. Right now she’s hooked up to the dialysis machine from 7pm to 7am. It doesn’t give her a great quality of life. She can’t go for a sleepover or anything like that.”
While mom is staying with Braelyn in Vancouver, father Christopher, who works at the mine, is flying back and forth between shifts. While there are organizations to help cover expenses (this go around, says Fowlow, they’re staying at Ronald McDonald House, which really helps with expenses.)
That’s where the school has stepped in. To be able to help the family cover some of their expenses, the school is doing a series of fundraisers over the next few weeks to help Braelyn. “She’s hoping to be back the last week before school out, so she can have a Christmas party with her classmates,” says teacher Cathy Lively, who is helping organize the fundraisers. “Her teacher, Mrs. Cotello, told her that if she gets back early enough, they’ll have a Halloween party, because she loves Halloween.”
On December 2, the school will be doing a cake walk on December 2, offer raffle tickets for family baskets (draw on December 13), and put out donation cans at local businesses (which will be out until December 12).
Lively says that for the last two years, Braelyn and family have had to travel back and forth to Vancouver, and that’s expensive. “And in the past year, it’s become bigger and more serious. It’s life threatening. She’s a part of our school family, so we are doing this for her.”
Mom Stacey says it’s been a blessing and a curse that Braelyn was diagnosed when she was very young. “It’s obviously really hard, but she doesn’t know any different. This is the way it has been her whole life. Being diagnosed so young was very helpful for us. It would be so much harder if it came now, where when she had a regular life.
“I mean, it’s never easy. Watching your child go through it. Staying down in Vancouver is financially tricky. Her dad works at the mines. He has been flying back every week for work and then flying back to be here with us. She has a little brother, too. He’s only two and he’s here with us. She has that little companion to go through this with, but it’s hard, because his whole life has been flipped upside down, too. But we make it work. It’s not something any parent wishes for, but knowing that she has the care she has and we have the support we have? It helps a lot.”
For now, the family will stay together at Ronald McDonald house until November 28. Then, says Fowlow, it sounds like Braelyn will need to go back into the hospital to start back on peritoneal dialysis. “It’s a slow process to get her back into it. So that will take about a week, maybe two. And then it just depends how it works. There’s a risk that there is scarring in her stomach and that a catheter might not even work. We obviously hope that that’s not the case. If that does work, it’s just a matter of when a surgeon can take out her HD line, because she can’t go home with that. The goal is to be home for Christmas.”
And then it’s just a matter of waiting for a donor kidney. “If that happens, we will be back in Vancouver. That trip will be probably three months because after a kidney transplant, you have checkups three times a week for a month. Then the following month, it’s two checkups a week and then once a week for a month, but it just doesn’t make sense for us to travel 13 hours back and forth for a once a week appointment, so we will stay here for three months.”
While this has been something she has been dealing with her whole life, Fowlow says Braelyn can sometimes start to feel down. “Now that she’s a little bit older and she’s in school, she does ask ‘why me? Why do I have the bad kidneys?’ And then on top of that, she has the catheter in her stomach and she has scars so she’s shy about that. She doesn’t like to show people. She doesn’t like to talk about it. She can’t get the catheter wet, so she misses out on swimming lessons or just going to the pool.
“She does what she can and you know what? She’s been so resilient and so incredibly brave. She goes for surgery and she says ‘I’ll see you when I wake up.’ She knows it’s one step closer. And she’s always asking ‘when do I get my new kidney?’ So while she’s scared, ultimately she knows it’s going to be over soon, hopefully and she’s going to feel better.”
Trent is the publisher of Tumbler RidgeLines.
