Cause for Celebration
Story by Kate Vanskike • Photos by Gary Matoso
TEN YEARS AGO, Providence took a giant leap forward in Spokane, WA pediatrics by opening Sacred Heart Children’s Hospital—a place designed for kids and focused on families, with physicians who believed that putting all the resources in one location improved care.
The medical center needed to bring together all the experts in children’s cancer, neonatology, cardiology and surgery, along with amenities like clubhouses and teen rooms, family spaces and even a movie theater to help families through harrowing times that sometimes require long hospitalizations.
Since then, the staff at Sacred Heart Children’s Hospital has saved countless lives and helped families heal through some of the scariest illnesses. Here’s a look at a few inspiring and courageous kids.
14 Years and Counting
Fourteen-year-old Dilan loves the band Kiss. He even drew a picture of the band and entered it in an art contest at school. Like many teens, he enjoys hanging out at the mall and listening to music.
What sets Dilan apart from his peers is his cystic fibrosis, a chronic disease that affects his lungs and digestive system.
In the 1950s, few children with the condition lived to attend elementary school, but today, Dilan can expect to live well into adulthood. He was diagnosed at just 5 months old and, in recent years, has been in the hospital as frequently as every three or four months. His usual 14-day stay was called a “clean out” because he needed breathing treatments four or five times a day to clear his lungs.
“Dealing with what he has is hard on him and on the whole family,” Dilan’s dad, Paul, says. “It’s like having part of the machine missing. … It just doesn’t feel or work right. But he always has a smile on his face and thinks of the positive part of life.”
Indeed, Dilan has plenty of positive things to say, even about his many visits to the hospital.
“I like Eric, who is my nurse every once in a while; he makes me laugh and makes me forget that I’m at the hospital,” Dilan says. “I also like hanging out with John, the volunteer. We play cards and board games together.”
For Paul, the Children’s Hospital is great for different reasons. “The staff treats Dilan like he is their own child,” he says. “I couldn’t see going anywhere else to get help for my son, and always advise people that if they have any problems with their children, to take them to Providence.”
When she was 3 years old—and bald from chemotherapy—little Anna appeared on a Heart Beat magazine cover. She was in treatment for acute lymphoblastic leukemia (ALL) at Sacred Heart’s Pediatric Oncology when her little sister, Madeline, was born and placed into the Neonatal Intensive Care Unit.
For a few days, parents Jenny and Brian split their time on opposite ends of the Children’s Hospital as both of their princesses received care. But even that wouldn’t prepare them for the agony to come.
Less than a year after Anna completed her treatment and life began to return to normal, Madeline was diagnosed with cancer, too.
“We were just 10 days away from the first anniversary of Anna’s treatment being over,” says Jenny. “We wanted to celebrate the milestone, but we had to do so as we admitted Madeline to the hospital.”
Madeline’s cancer was the exact same kind as Anna’s—so Jenny and Brian already knew the treatment plan, understood the drugs and had reasonable expectations for how things would go. Even more important to the family: They also already knew all the staff at Sacred Heart’s Pediatric Oncology and trusted them completely.
“The first time, I was trusting my child with complete strangers,” Jenny says. “This time, I knew we were dealing with competent, loving people, and I didn’t question if they knew what they were doing. Having those relationships in place, we found a groove much sooner than we did with Anna.”
The staff had seen and held Madeline since she was just a couple of weeks old; she grew up at the hospital as her big sister underwent treatment.
“In fact,” says Jenny, “I think her first sentence was ‘Hi, Judy!’ to Dr. Felgenhauer, our pediatric oncologist.”
Today, Anna is a straight-A student in third grade who plays soccer, runs fast, climbs trees, takes risks and is not afraid to try anything new. Her mom says she “takes life by the horns and rolls with it.” Soon, she’ll reach her fifth anniversary of the end of treatment, and her checkups will be only once a year.
Madeline, a kindergartner, is much more cautious than her daredevil big sister. She wears elbow and knee pads when she rides her bike, and she’s not crazy about climbing trees. Instead, she is the family artist and does some pretty fantastic karaoke. She is now one year out from her completion of treatment, and the family is on the journey back to normalcy.
While Anna’s memories of her treatment are foggy now, she and Madeline both have the scars to show what they’ve been through, and they share a twinlike bond.
“They are very, very close,” Jenny says. “Half the time, when I go to wake them in the morning, they’re in the same bed, snuggled up together.”
Anna is so in tune with Madeline that she often senses things no one else can. Jenny tells of a night when Anna emphatically told her that something was wrong with Madeline.
“She was really adamant about it and I kept saying, ‘No she’s fine.’ But sure enough, Madeline ended up in the hospital that night,” Jenny remembers. “I’ll never forget the worry in Anna’s eyes … she knew.
That’s the bond they have. It comforts me to know that they have each other.”
A Heart for What's Normal
The day Kevin was born, doctors knew he had a heart problem. Its name was aortic valve stenosis—a condition that causes the heart to work extra hard and requires valve replacement surgery.
“It was a shocking way to enter parenthood,” his mom, Kristi, says.
He underwent his first of many surgeries at just 6 months old. Since then he has had two open-heart surgeries and multiple other procedures, all at Sacred Heart Children’s Hospital, 150 miles from their home in Richland, Wash.
“Taking Kevin into the cardiologist’s office for the first time was so scary. Now, when I am sitting in the waiting room with my big, healthy 17-year-old, and I see those parents with their newborn come in, I really feel for them,” says Kristi.
She remembers what it was like to take him to the cardiologist every month for an ultrasound and an EKG and trying to decipher the images on the screen. She recalls coming to the hospital and handing over her chubby, healthy-acting baby to the nurses for surgery, and the long wait to see him again.
While Kristi says it was “the most emotionally painful experience we’ve ever been through as parents,” their experience in the hospital taught them that there was always someone dealing with something worse. Across the hall, a little boy with flesh-eating bacteria was having parts of his body amputated.
“We learned to be grateful for our own trials,” she says.
During that hospital stay, they also benefited from a nurse’s advice: No matter what, treat your son like a normal kid, or he will grow up to be miserable.
“I’ve always appreciated that advice,” Kristi says. “There were some limits because of his heart, but we’ve always tried to make sure Kevin had as normal a childhood as possible.”
In 2010, Kevin’s aortic valve was removed and his own existing pulmonary valve was put in its place. Then a valve from an organ donor was transplanted into the place where his own pulmonary valve used to be. One year later, he underwent surgery to implant a Melody® heart valve through his femoral artery.
Mom is happy to report Kevin has been doing wonderfully ever since.
“Sacred Heart and the doctors at the Congenital Heart Clinic have been wonderful,” Kristi says. “I remember nurse Beth Dullanty from the very first surgery, giving Kevin his heart bear and helping us prepare mentally for what to expect before and after surgery. She was there for each surgery. I remember the feeling of familiarity when we would end up in the hospital after years of wellness and seeing faces from long ago, and knowing that we would get through it just like last time. We had complete confidence, knowing our precious boy would be well cared for.”
Initially scared of needles, Kevin got over that fear and soon became the patient who played tricks on the staff. As he got older, he noticed other things—like how cute one of his nurses was. Now a junior in high school, he attends a skill center in Kennewick and looks forward to working as a welder when he graduates.
“Kevin is an amazing kid,” his mom says. “I think his hospital experiences have made him more compassionate and more aware of the value of life and family.”
Kevin recently achieved the rank of Eagle Scout, and for his Eagle project, his Scout troop assembled 100 heart bears for pediatric patients undergoing heart surgery.
“It was his way of giving back to Sacred Heart for everything they’ve done for him,” his mom says.