Heartbreak: Nothing compares to parenting a child with cancer
Mother says, ‘It’s like somebody takes your heart and squishes it’
Waikapu resident Rachael Au Hoon followed 3-year-old Trucker Dukes’ inspirational battle with neuroblastoma last year in amazement.
Never did she think, though, that her own daughter would fight the same disease a few months later.
“It was like God and the universe was preparing me for my own journey, which I had no idea was going to happen,” Au Hoon said earlier this month. “But until you go through this experience, there’s no substitute.”
Au Hoon started noticing something was wrong with her daughter, Kahalau, 3, last summer after she graduated from preschool and was headed to Hawaiian immersion school. The mother and her husband, Duke, also share a 6-year-old daughter named Honi Honi.
“In June, she just started to decline,” Au Hoon said of her youngest child. “When she walked, it was almost as if she was intoxicated. She couldn’t walk in a straight line, which was strange because she was the queen of the jungle gym.”
Kahalau began having random episodes of fever with no other symptoms, so her mother took her to the doctor, who believed it was just a phase. By the end of June, she continued to cry and experience pain, so she was sent to Kaiser Moanalua on Oahu for further tests.
On July 11 Kahalau was diagnosed with stage 3 neuroblastoma — a rare and aggressive pediatric cancer. Doctors found a large mass in her abdomen nearly the size of a watermelon.
“It was devastating,” Au Hoon said. “It’s like somebody takes your heart and squishes it.”
Au Hoon, a skilled artist and owner of U’i Gallery in Kahului, closed her store to focus on her daughter, who immediately began six rounds of chemotherapy. Thankfully, the cancer was isolated in her abdomen and had not traveled to her bone.
Kahalau responded well to treatment and by December the tumor had shrunk about 80 percent. The family traveled to Seattle Children’s Hospital for a 10-hour surgery to remove what was left.
“We were so thankful the operation went well,” Au Hoon said. “The doctor had to reconstruct her diaphragm, or basically reconnect her stomach, intestines, spleen and pancreas. It took a while for her gut to recover.”
Just a month later, Kahalau underwent six days of intense chemotherapy followed by a stem cell transplant. The procedure helped her body grow back white blood cells and increased her survival rate from 45 percent to 75 percent.
“She’s like a newborn,” Au Hoon said. “We have to be very cautious who she’s exposed to and what she eats.”
Kahalau will spend the next couple weeks in radiation and recovery. She will then go through immunotherapy, a painful procedure that trains her own immune system to help fight cancer.
Au Hoon has spent most of her time in the hospital with her daughter, flying back and forth from Maui to Oahu for treatments. Her husband reopened the gallery and works with customers there, while she does work remotely.
“It took my husband a long time to face reality,” she said. “It’s just so heartbreaking. It took him a lot of strength to face people on a daily basis.”
Duke Au Hoon said he blamed himself when his daughter was diagnosed with cancer. However, he recalled returning home and seeing a neighbor, who never waved or smiled, standing in his garage to greet him.
“He starts crying, and I’m like, ‘Did I do something?’ “ Duke Au Hoon recalled. “He says, ‘No, no, not at all Duke. I live up the street and found out your daughter is battling cancer. The whole neighborhood knows.’ He goes, ‘I also have been fighting for my daughter’s life . . . and I lost my daughter.’
“Right there, he and I started crying.”
Friends, family, neighbors and strangers have helped the Au Hoons financially and emotionally. A GoFundMe crowdfunding page has raised nearly $60,000 over the past eight months to help the family with medical bills.
To donate, visit www.gofundme.com/kahalaus-treatment.
The Au Hoons were honored in the Trucker Dukes Memorial 5K on Saturday, but could not attend due to Kahalau’s health. The run dedicated to Trucker, who died one year ago after inspiring thousands, raised money for people with cancer and the search for a cure.
“It’s magical because we didn’t expect anyone to help us at all,” Duke Au Hoon said. “When the community found out my daughter was going through neuroblastoma, they all jumped on board. It was like total strangers coming out and helping. To be in that cancer community, it’s very unique and very tough to be on this path to fight for your child’s life.”
Trucker’s father, Joshua Dukes, a Maui firefighter, said he made contact with the family through mutual friends and plans to meet with them soon. He said he hopes his family can help other cancer families with meals, travel expenses and other costs that they have been helped with by many.
“It’s a really horrible club to be a part of, but once you’re in it, you find focus and purpose and family,” he said.
Rachael Au Hoon said the family expects to return home with Kahalau this morning. The family will be home for a week before returning to Oahu for more radiation treatment.
She said her daughter loves to dance and is known for singing in the hallways while going through chemotherapy.
“Adults have messaged me saying I’m going through treatments, and the only thing that carried me through was watching her daily story,” the mother said. “If she can be courageous, then I can too.”
The family advised all parents whose children are fighting cancer to thoroughly research their particular illness and spend as much time with them as possible. Little research has been dedicated to pediatric cancers, thus many treatments and medications are not certified by the Food and Drug Administration, so doctors are relying on patients for trials, Duke Au Hoon said.
“They get you by the tail because you want to save your daughter’s life so you’ll say yes to everything,” he said. “The best thing to do is educate yourself with that specific cancer they have and do research on every medicine. Be that advocate parent and use your intuition. It will save your child’s life.”
Follow Kahalau’s story on Facebook at www.facebook.com/kahalauscancer/.
* Chris Sugidono can be reached at firstname.lastname@example.org.