By Robert Mangelsdorf - Maple Ridge News
Published: May 13, 2010 3:00 PM
Few decisions have come as easily to Dennis Teboekhorst.
The Maple Ridge firefighter decided in January to give one of his kidneys to his five-year-old daughter Grace, so she might live a long, happy, and somewhat healthy life.
"I would have done it right there on the spot if I could," he says.
Grace suffers from a rare kidney disorder and requires a kidney transplant for any shot at a normal life. Dennis is a match, and after months of tests, he has cleared nearly all the hurdles required prior to the surgery.
"We've got our fingers crossed," he says. "All the major ones are done, so there's only a few more to go."
Dennis will have to undergo arthroscopic surgery as part of the transplant and will likely never fully regain all of his kidney function.
But it's a small price to pay.
"It was a no-brainer," he says.
Grace was first diagnosed in December of 2008. Grace's mom, Melissa, had noticed she was looking somewhat swollen, but didn't think much of it.
Her eyes were a bit puffy, and she seemed to have a lingering cold, but it didn't seem out of the ordinary for a three-year-old.
"I thought I was the only one that saw it," Melissa says.
But gradually, the symptoms became more serious, and curious.
Grace's urine began to smell foul. The swelling got worse. The cold never went away.
After her pre-school teacher noticed she was having trouble breathing one day, the Teboekhorsts took Grace to Ridge Meadows Hospital, where tests revealed high levels of protein in her urine. The pediatrician confirmed Grace was suffering from a rare disease called nephrotic syndrome.
"Only six out of every 100,000 people are likely to get the disease, and of those six, only one will be female," says Dennis.
"It knocked the wind out of us."
The disease damages the kidneys, weakening the body's immune system. However, the medication required to treat the disease suppresses the immune system further, leaving Grace vulnerable to any sort of illness.
If anyone in the family comes down with a cold or a flu, they're shipped off to Oma and Opa's place down the street, lest Grace pick up their bug.
"We can't take her to the grocery store or to the park," says Melissa. "Sometimes we'll go down to the dike, but only first thing in the morning before people get there.
"Cold and flu season is a stressful time around here."
Although the disease isn't contagious, Grace must wear a face mask at all times outside the house. Family dinners are out, so are birthday parties.
What might be a cold to one child could hit Grace as full on pneumonia, flood her lungs with fluid, and potentially kill her.
That's exactly what happened last November.
After a two-week stay at Children's Hospital in Vancouver, Grace took a turn for the worse. Her lungs, kidneys and heart were shutting down, and her body was so swollen her eyes couldn't open.
Dennis was at home in Maple Ridge when Melissa called to tell him she was being transferred to an extracorporeal life support machine.
"I made the trip in 23 minutes," says Dennis.
When he arrived at the hospital, he found his little girl was more machine than human. Tubes protruded from her chest, her mouth, her stomach. The machine that took over for her heart and lungs filled the room, as did dozens of doctors and nurses.
"You couldn't even tell she was in there," he says.
After seven days, Grace's lungs were still full of fluid, and any hope for a recovery was dim, at best.
But on the eighth day, her lungs had almost completely cleared, and she was ready to be taken off life support.
"The doctor couldn't believe it," says Dennis. "They thought they had the wrong X-rays."
Grace was released from hospital a few days later, on Christmas Eve.
"That was the best Christmas present of all," says Melissa.
However, Grace's bout with pneumonia severely damaged her already weak kidneys. The family now travels to Children's Hospital for kidney dialysis four to five times a week.
On good days, Grace is a flaxen-haired bundle of energy, with a nasal-gastro tube permanently attached to her face and through which she receives the majority of her sustenance and medication.
On bad days, she is in a near-constant state of nausea, throwing up continually.
"It's the first thing she wakes up to and the last thing she does before bed," says Melissa.
The couple takes turns sleeping with Grace each night. Her rest is fitful and often short, but their presence beside her helps her sleep. Even Dennis manages to curl his hulking frame into Grace's single pink princess bed, to hold his fragile child in his arms as she sleeps, cherishing every moment with her.
Throughout the entire ordeal, Dennis and Melissa say the support they've received from their friends and family has been overwhelming and unwavering.
Since Grace can't go the park, the men of Fire Hall No. 1 brought the park to her, pitching in to build a playground in the Teboekhurst's backyard.
"The support has been amazing," says Dennis. "It means so much when we're having a rough day of tests and dialysis to come home and find a home cooked meal waiting for us."
The life of parents of a sick child is one of constant stress, and constant fear.
"It's a full-time job," says Dennis. "Running into a burning building is probably the easiest part of my day."
As a living donor, Dennis has had to undergo months of testing to ensure his kidney will be a positive match for Grace. However, while Grace's testing was completed weeks ago, Dennis's has dragged on for months.
And the clock is ticking.
The transplant must be performed at least three months before the cold and flu season begins so Grace has enough time to heal, and the earlier the procedure is performed, the better. If the delays in testing Dennis push the surgery date past July, Grace would have to wait until next year for the transplant.
Dennis blames the provincial government's health care cuts.
"They've always said the cuts wouldn't affect kids, but because I'm an adult, I have to go through the adult system," he says.
As a result, he has to wait longer to get an appointment for testing, and the results take weeks longer to come back.
"If I was child, this would have been done already," he says. "It sounds morbid, but if I was deceased, she would have her kidney.
"I don't care what the risks are to me, let's get this done. It's frustrating."
Both of Grace's damaged kidneys will be removed, and replaced by Dennis's left kidney, despite the fact Dennis stands six-foot-five and weighs 285 pounds.
Grace calls it her super kidney.
"She has done everything she can to get ready for this," says Dennis. "It's just bureaucratic red tape at this point."
Dennis, too, has done everything he can.
Countless hours at the gym and running the streets of Maple Ridge have not only allowed Dennis to drop 45 pounds in the past five months, but have given him a welcome break from the stresses of dealing with a sick child.
"This one here," he says pointing to a picture of his daughter. "She's my hero. She's what keeps me going. I want to make sure she has the best kidney she can get."
While the procedure poses obvious risks for Dennis, he is more concerned about not being there for his family. While his child is under the knife at B.C. Children's Hospital, he'll be under sedation miles away at Vancouver General.
"I can't be there for Melissa and Grace," he says. "I'm powerless to do anything, and that's hard to accept."
Even if the transplant takes, the kidney will likely only last 10 to 20 years, although medical advances could extend that.
Since Melissa is ineligible to donate because she has Crohn's disease, the next most likely donor could be Grace's little brother, Calym, now just two years old.
For now, the family must wait.
"When she asks me, “Daddy, when do I get my kidney?' what can I say," says Dennis.