Kenson III and Brenda Vance, along with their 13-year-old son Kenson IV and their parents – Linda Cullers (who lives in an apartment on their property) and Wanda and Kenson Vance of North Richland Hills – have strapped in for a wild ride, sharing the journey of their daughter, Katie.
Born with Down syndrome, then diagnosed with leukemia at age 2, her five years of life have been a whirlwind of hospital visits, doctors appointments and agony; smiles, hugs and inspiration.
“You go from joy, everything’s getting better, to fear to anger to frustration to grief because you feel like you’re grieving over a child you think is about to pass away,” her dad said. “The experiences that you have are unlike anything you could imagine. The suffering this kid goes through is very heart-wrenching. But she is a bundle of joy.”STEEP DROPS
Because Brenda was older than 35 when she was pregnant with Katie, she was closely monitored.
“We knew she was going to have Down syndrome before she was born,” Brenda said. “In the beginning there was a 1 in 100 chance she’d have Down syndrome. Toward the end of the pregnancy that number was 1 in 4.”
Katie was born four weeks early on her dad’s birthday, Feb. 9, 2007. She was delivered by C-section at Texas Health Fort Worth and was immediately wheeled away to the neonatal ICU.
“I couldn’t hold her, couldn’t touch her,” Brenda said. “When mothers have babies like that, they automatically send them to NICU, and there’s not that bonding that most mothers would normally get with their child. And you leave the hospital without your child … It’s very difficult, depressing.”
The newborn was transferred to the adjacent Cook Children’s Hospital and underwent surgery 24 hours after she was born. After doctors cleared her duodenum, which was 100 percent blocked, she remained in the NICU for four-and-a-half weeks. She had a second similar surgery at seven months when scarring blocked the small intestine again.
Then at nine months, she underwent open-heart surgery to repair three holes, one of which was so big “doctors were constantly bringing their interns to see it as an example.”
“Dr. Vincent Tam, who is one of the best heart surgeons in the country, did the surgery,” Brenda said. “What was good about that was that he had done a lot of other Down syndrome kids, and when he went in, he found several things wrong with her heart that they did not catch on the CT scan and x-ray. So instead of being multiple surgeries, it was a one-time deal.”
On another occasion, Katie stopped breathing and had to be flown from the front lawn of her home.
“There were plenty of times, laying in that hospital bed with her, that I thought she was going to take her last breath in my arms,” her dad said. “It was tough. But every time, she rebounded.”
After about seven months, life settled into a routine. Katie flourished with the help of her “awesome” therapists in Early Childhood Intervention (ECI), and when she turned 3, she became eligible for HeadStart PPCD (preschool program for children with disabilities) in Bridgeport.
She was there five weeks when she contracted a terrible viral infection.
“She plummeted,” her mother said. “I mean, she was tanked.”
The family took her to Cook Children’s and waited. After two hours the doctor bolted in and told them she had leukemia.
“We were immediately sent to the cancer wing, and there were a couple of young women there asking, ‘Can we help you?’,” Brenda recalled. “I just remember thinking, ‘I want you to leave so I can scream and roll around on the floor.’”
A complete blood count revealed an abnormally low white blood-cell count.
“A normal person will have a minimum of 4,000 white blood cells,” Brenda said. “She was showing half that amount.”
During Katie’s five-day hospital stay, doctors and her parents weighed the pros and cons of a bone marrow test.
“She didn’t show high enough signs that the doctor felt comfortable going ahead and doing it,” her dad said. “They decided it was just a fluke bug. So they sent her home saying they didn’t think it was leukemia.”
Six weeks later, the roller coaster plunged again.THE LOW OF LOWS
It started as a double-ear infection and low-grade fever. Two weeks passed, and the fever didn’t subside with antibiotics.
“Then she started doing this reverse hiccup,” Brenda said. “And she would only stop if I pressed her really hard against my chest.”
The next morning, Katie was taken back to Cook Children’s.
“There were a lot of people in that waiting room, and they would put a color on you depending on how bad you are. Apparently, she got the worst color. They pulled her out of line and took her to the most critical ER. Everyone’s piling around her, and that’s when I start losing it. That’s when I knew it was far worse than an ear infection.”
A doctor walked in with the results of her blood cell count.
“As a stupid mother, I blurt, ‘She doesn’t have leukemia,’” Brenda said. “He looks at me and asks, ‘Why would you say that?’ And I say, ‘Because the last time she was here they thought she had leukemia, and she didn’t have it so she doesn’t have leukemia.’ He asks if she has had a bone marrow aspiration and I said, ‘No, because she doesn’t need one because she doesn’t have leukemia.’”
The doctors continued running tests. Katie was released, then returned two days later for a bone marrow aspiration and it was then – April 13, 2010 – that the diagnosis changed. Katie had acute lymphoblastic leukemia (ALL).
“I thought she was going to die,” Brenda said. “I knew a kid when I was very young, and he died within six weeks. You really do feel like you’re given a death sentence.”
Factoring in the Down syndrome, the odds were not in Katie’s favor.
“She had a one-in-four chance of dying in the first 30 days,” Brenda said. “Doctors watched Katie like a hawk because they don’t know how kids with Down syndrome will react to chemo all the time. Sometimes she was OK; sometimes her counts would gutter out to zero.”
Katie lost her “cute curly, curly” locks, and a dentist pulled her teeth to avoid an infection from the grinding.
But she prevailed.
“She got parainfluenza May 1 and almost died then,” Brenda said. “They said kids do not live if they get sick in the first 28 days, in the most severe phase of the chemotherapy. With chemo, your defense systems are completely down which means a common cold could be fatal.”
But she continued to prevail.
“The only reason she made it through is because of prayer,” Brenda said. “Prayer makes a difference. She is a testament of that.”
Six months into the chemotherapy treatments, Katie started walking.
“One of the signs of leukemia is pain in your legs,” Brenda said. “That’s why she could not walk. But because of the Down syndrome, there was no way to communicate that. Before, she would try to walk but would always regress.”
After an oral dose of chemotherapy at home every day for two years, Katie went into remission this June. With that release came freedom – to be around other kids, go to the grocery store and plan trips.
“You’re very confined when you’re going through the treatment,” Brenda said. “You can’t have your child exposed to other people. You have to be within an hour of a hospital. If you go on a trip, you better know where the nearest hospital is.”
Katie started school as part of the Wise County Special Education Cooperative at Bridgeport Elementary this fall.
“She’s doing great,” Brenda said. “She’s learning and growing. Things are good.”
“I want people to know it’s OK,” she continued. “You’ll be OK. With family and friends, you’ll make it. Many people think of cancer as a death sentence. But that’s not the case.”
According to research, your highest chances of survivability are between the ages of one and 10.
“At that age, they can take chemo a lot better,” Brenda said. “They react better to the chemo and rebound so much faster. They have no concept of death. As adults, we think into it too much.”
Katie redefined that for her parents.
“I always lived in the future – when she goes to kindergarten, when she goes to kindergarten,” Brenda said. “You can’t do that. You don’t have that luxury of thinking ahead into the future. You can only live for that moment, enjoy that moment. And that’s what we do.”
Katie is expected to be fully released in December.
“Every month that goes by that it doesn’t come back, the chances of it coming back decrease,” Brenda said. “Every month it gets a little bit better.”
“There are days you cry; other days you’re kind of numb,” her dad added. “Then there are days that are the best days of your life.”
From her bedroom, Katie belts out the words to her favorite old country songs as they play on YouTube.
“I love little baby ducks, old pick-up trucks … And I love you, too,” she sings along.
Her dad smiles proudly; her mother chuckles lightheartedly. At that moment, the family enjoys the view from atop the roller coaster.