In just the last month, “our world flipped upside down,” Keola Higa said.
Keola, wife Emily and their two little boys moved from Oahu to Maui last year when he landed a job teaching Spanish at Seabury Hall. The family lived on the beautiful Upcountry campus in faculty housing, and many mornings, 3-year-old Nainoa would put on one of his favorite superhero costumes — usually Spider-Man, Superman or the Hulk — and have breakfast with his father alongside the students in the school cafeteria. The high school kids got a kick out of him. So cute. So into it.
A month ago, Nainoa started feeling ill. His younger brother, Kainalu, had just had a bout of stomach flu, so that seemed the likely explanation. But Nainoa didn’t get better.
Then, on May 5, Nainoa’s stomach just ballooned, “like he ate a whole watermelon,” Keola said. “And it felt hard.”
The Higas took Nainoa to the emergency room several times and each time they were told that it was probably gas and Nainoa was sent home. On May 7, doctors did an ultrasound and saw liquid in Nainoa’s abdomen. That led to a CT scan, where they found various tumors and masses in the little boy’s stomach. This was serious. This was scary.
Early on the morning of May 8, Keola flew with his son in an air ambulance to Honolulu. At noon that day, a surgeon extracted the largest of Nainoa’s tumors. “From that moment, we kept getting bad news,” Keola said. The diagnosis was rhabdomyosarcoma, a rare cancer, and it was stage 4. They found out on Mother’s Day.
“It was the worst Mother’s Day ever,” Emily said.
After the diagnosis, the family went back to Maui to pack up their things and say goodbye. They’re moving back to Oahu for Nainoa’s treatment. The plan is eight to 10 months of chemotherapy.
When the Seabury Hall community heard about Nainoa’s diagnosis, they immediately organized a pass-the-hat fundraiser that raised $9,700. But more than that, the entire student body held a Superhero Dress Up Day to stand in solidarity with the little kid they’d come to love. Everyone came to school in a superhero costume and told Nainoa that he would be the bravest of them all.
Nainoa started chemotherapy at Kapiolani Medical Center two weeks later.
“It seems like it’s working,” Keola said. “His belly is back to its normal size.”
Now another call is going out to marshal superheroes for Nainoa. It started when Cate Matsushima, a friend of Nainoa’s grandmother, went to see if she could help.
“When I first met Nainoa at the hospital, he opened his arms to me and began talking like we had known each other like old friends,” Matsushima said. “This is just how this kid is — all heart, just like a superhero. His only concern was the fact that he didn’t have his superhero outfit on. So we had a very long conversation about superheroes. This kid made a huge impression on me.”
Soon afterward, Matsushima said she “accidentally” ended up attending the recent Amazing Hawaii Comic Con at the Hawai‘i Convention Center. She had no intention of going, but had purchased a ticket for her son, who ended up having other plans. Instead, she and her husband turned it into a date night.
“I was dreading the whole thing — I mean, it seemed kinda nerdy,” Matsushima said. “But when we arrived, I got all excited seeing Spider-Man, Batman and some unidentifiable superheroes. I remember squeezing my husband’s hand and saying, ‘Oh my gosh, I wish Nainoa could see all of this.’”
Matsushima decided to try to create that experience for Nainoa. She set up a Facebook page (find it at 808ne.ws/1Zo6YvH) where anyone with a good heart and a playful spirit can put on their best convention outfit or homemade Superman cape and send a photo and words of encouragement to a little boy who is trying his best to be brave. People have been posting images of characters like Superwoman and Thor with messages of hope. Some local artists have been posting their original superheroes, too, like Aumakua Guardians of Hawaii, which includes a message that says, “Take care little braddah you are SUPAH BRAVE and SUPAH AWESOME!”
The Higas have been showing the photos to Nainoa. “He’s been so quiet and lethargic, but when we show him people’s superhero pictures, he starts the conversation,” Keola said. “It’s been the bright spot in this whole thing.”