20 Years of Miracles
Photo by Lawrence Tabudlo
Had it not been for Kapi‘olani Medical Center for Women & Children, Julie Kobayashi and Seeley Borges would not be alive today.
Julie was 11 years old when she learned she had myocarditis — a rare heart condition — and needed a heart transplant.
Seeley was diagnosed with acute myeloid leukemia as a newborn. At just a few weeks old, she underwent chemotherapy, then a bone marrow transplant.
Today, Julie is a bright 24-year-old pursuing a Ph.D. in public health from University of Hawai‘i at Mānoa while perfecting cupcake recipes on the side, and Seeley is a precocious preschooler tumbling through gymnastics classes and snuggling her pet cats.
Julie was the 2016-2017 Children’s Miracle Network champion for Hawai‘i and Seeley is this year’s champion. They share their stories to give hope to others and to raise awareness and funds for Kapi‘olani — the only full-service children’s hospital in the state.
As a nonprofit, Kapi‘olani relies on donations to cover the cost of the advanced equipment, cutting-edge research, capital improvement projects, and medical staff that enabled it to care for Julie, Seeley and countless other keiki in Hawai‘i and the Pacific region. The hospital treats all children, regardless of a family’s ability to pay.
In the coming days, folks will be hearing from more families who have had their lives changed by Kapi‘olani — because Sept. 17-18 marks the return of the Kapi‘olani Radiothon for Kids hosted by KSSK. This year, the Radiothon marks 20 years.
“There are only two days out of the entire year when we change the entertainment format of KSSK completely,” says Michael W. Perry, host of KSSK’s Perry and the Posse show. “We do it for one reason: to ask listeners to support this beloved hospital with their hard-earned money, and they have never let us down.
“We always say that ‘every parent has a Kapi‘olani story,’ and we have interviewed hundreds of them for 20 years now,” he continues. “We have spoken with parents celebrating the birth of their baby, as well as families who endured some of their darkest days while caring for a seriously ill child. We have had the privilege to hear families talk about happy times, painful times and times of great hope.”
This is what sets the Radiothon apart from a typical fundraiser. When folks tune in, they hear firsthand how their contributions help. Here are a couple of those stories.
“My baby does not have cancer”
Seeley was born on Kaua‘i during the waning days of the COVID-19 pandemic. Despite the craziness unfolding in the larger world, her parents say the pregnancy was normal and Seeley was a sweet, mellow and seemingly healthy baby.
But Hayley and Shawn Borges were concerned about her recurring fever. They took her to the emergency department at Wilcox Medical Center for peace of mind.
When medical staff saw Seeley, her temperature was normal. Hayley and Shawn had seen this before — the fever always returned.
“My husband was like, ‘I would feel better if you guys did a blood test,’” Hayley recalls. “He has some medical background because he’s a police officer. He’s seen enough that he wanted it in black and white on paper. Whereas I was more old school, whimsical, like, ‘Oh, good, it’s fine. Let’s go home!’”
When the blood test results came in, Hayley felt the mood shift. Seeley’s white blood cell count was 60,000. A normal count is around 5,000. There had to be a mistake. The medical staff did another test. The results showed 61,000. They tried to take a spinal tap, but because Seeley was so young, they weren’t able to.
The Wilcox staff began prepping Seeley for a medical transport to Kapi‘olani. Only one parent could go with her. Hayley and Seeley arrived at Kapi‘olani at 1 a.m. A staff of 20 was waiting for them. Hayley was terrified, but sensed she was with experts. They will figure out what is wrong, fix it and send us home, she remembers thinking.
Instead, she was there for days as Seeley underwent tests. By then, Shawn had joined them, but their older daughter, Ainsley, remained on Kaua‘i with relatives. Finally, Dr. Wade Kyono came and introduced himself as a pediatric oncologist.
Hayley recalls he said, “Although I do not know what type of cancer, I’ve done this long enough to know that this is cancer … I’m going to tell you guys some very hard news. She’s going to have to start chemotherapy tomorrow or she’s not going to be here by the end of the week.”
Hayley felt the blood rush to her face. She remembers saying, “No. Nope. Not an oncologist. No way. We’re not doing any of that. My baby does not have cancer.”
In the back of her mind, she had feared just this scenario. Finally, Shawn excused them both, found a bathroom with a shower and doused her with water. He told her they needed to trust the doctor and be strong for Seeley.
“I don’t think until that moment I really accepted it,” Hayley says. “This whole time I was just like, ‘No.’”
Seeley would start chemotherapy the next day. She would remain in treatment for nearly a year.
“MY ‘burst’ birthday ever”
Despite feeling a constant fatigue, Julie was a normal 11-year-old in 2013. She played the clarinet. She jumped and twirled as a lion dancer.
Her parents were perplexed, though, because she threw up every evening and got tired walking up a flight of stairs. Even when she rested, she could see her heart beating through her shirt.
Thanksgiving was coming up, so her parents made a doctor’s appointment before the office closed for the holidays. Julie’s father went with her and the doctor sent them to a lab for tests. Julie was bummed about missing an excursion to Ice Palace, so her dad promised to take her to Ice Garden for shave ice afterward.
When they got to the lab, Julie fainted and had to be rushed by ambulance to Kapi‘olani. She woke up and saw Dr. Andras Bratincsak, a pediatric cardiologist. He explained that her heart was working at a rate of less than 10%. She was in critical heart failure.
“I was in complete denial because I was so healthy,” she recalls. “I was doing sports at school and other stuff on the side.”
Still, it explained the throwing up and tiredness.
“I ended up spending just under a month in Kapi‘olani’s intensive care unit,” she says.
She was there for Thanksgiving. And on Dec. 11, that’s where she turned 12. Because she was too ill to leave, her nurses threw her a surprise party. They invited her friends from Washington Middle School.
“I called it my ‘burst’ birthday ever,” Julie says. “Because it was my best birthday ever but also my worst birthday ever.”
It was the best because Kapi‘olani had gone above and beyond to keep her spirits up. Staff there even helped her with school work so she wouldn’t fall behind. Her parents had also, finally, gotten her an iPhone. It was the worst because “Dr. B” had told her that attempts to stabilize her condition with medication alone were not working. She would need to go to the mainland for a heart transplant.
“I was very scared at times, but at the same time, too, I was so tired because of my condition, I was so fatigued,” she says. “I don’t have the energy to scream and get mad about it. I don’t have the energy to cry about it.”
Kapi‘olani’s Critical Care Transport Team got her to Seattle Children’s Hospital — where she tried her first Starbucks drink, a Vanilla Bean Frappuccino.
Julie would undergo three surgeries — a left ventricular assist device transplantation, a washout surgery to clear blood clots and the actual heart transplant.
“More resilient than I thought”
Seeley responded well to the chemotherapy, but ultimately needed a bone marrow transplant. Hayley and Shawn organized multiple donor drives, but there was no match. Dr. Kyono recommended trying a half-match and Hayley was deemed the most suitable candidate.
She remembers the procedure was uncomfortable “but if you told me I could save a million kids by doing it, I would do it every day.”
Despite the success of the transplant, she worried about how her baby would acclimate to the outside world. Seeley surprised and inspired her by embracing life without fear.
“She’s just very secure and fierce,” Hayley says. “She definitely has no problems making friends.”
Today, Dr. Kyono is like a grandfather to Seeley. Hayley says he is the reason Seeley is alive. He continues to see Seeley during regular appointments at Kapi‘olani.
As for Julie, more than a decade has passed since her heart transplant and she’s living a normal life. Before her illness, she had imagined becoming a chef or a teacher. Now, she wants to help make sure others have access to quality healthcare.
And she is proud of the scar from her surgery, even sometimes wearing outfits that highlight it — tastefully, of course.
“It’s kind of a way to honor my organ donor and the work that the doctors and the medical team put into me,” she says. “It’s also kind of like a reminder that hey, I’m a little more resilient than I thought.”
