Jacksen Crater Olson is a rambunctious 1-year-old.
Actually, he hasn’t quite reached his first birthday — that happens Sept. 20. But the Kauai keiki has already mastered cruising around the playground at Princeville park. And he’s bounced back from retinoblastoma, a cancer that took his left eye in June.
“It happened really fast from the time they saw something to the surgery,” said Jacksen’s mother, Amanda Olson. “It was our pediatrician, Dr. (Jesse) Lam, who first noticed the red reflex.”
The absence of red reflex, or pupil reflections in photographs, is one of the signs a child could have retinoblastoma, which represents 2 percent of cancers diagnosed in children before the ages of 15, according to the National Cancer Institute.
Lam keyed in on the absence of a red reflex at Jacksen’s six-month check-up and referred the family to ophthalmologist Dr. Layne Hashimoto for a follow-up a few months later.
But then Amanda’s intuition kicked in. She moved up the appointment after noticing a slight irregularity in her son’s left eye on a video she’d taken of him with her phone.
In the video, Jacksen is dancing to his favorite song — a dance that involves his mom snapping her fingers around his head. He responds to the snapping on the right side, but doesn’t notice the snaps on the left.
“That’s when I started wondering if something was going on,” Amanda said.
The appointment with Hashimoto was moved to June 5, and the next day Jacksen and Amanda were on an airplane to the Children’s Hospital of Los Angeles for testing.
Amanda was alone with her son at Hashimoto’s Eye Care Center office when she got the news. Her husband, Jack, was taking advantage of the time in Lihue to shop.
“All I wanted was Jack there with me, I needed him,” she said.
Jack knew there was an emergency the moment he picked up the phone, but didn’t know the extent of it until he reached Hashimoto’s office.
“I just left the groceries and drove straight to the doctors,” he said. “It was dreadful, but I tried to put aside any emotions and go to the ‘just do it’ phase.”
Jack wasn’t the only one who sprang into action. In the office, Amanda stopped Hashimoto mid-explanation and started orchestrating flights, the whole time unsure of what the diagnosis of Jacksen’s condition would be.
They left Lihue that night, a Tuesday.
By Thursday, Jacksen went in for an exam under anesthesia at the Children’s Hospital Los Angeles. The family was staying with Amanda’s brother, who has a son born the same day as Jacksen.
Thursday afternoon, Amanda and Jack had a photo of the tumor — which was large and could spread — and a choice to make: chemotherapy and surgery to remove the tumor and save the eye, or remove their 9-month-old’s left eye completely.
“At that point he had no sight in the eye and we didn’t think it was a good idea to go through chemo and all that for aesthetic reasons,” Amanda said.
Just before noon on Friday, three days after Hashimoto suggested they fly to California, Jacksen’s eye was removed in an enucleation surgery.
“It was the scariest and hardest morning of my life,” Amanda said. “But I was also glad it was getting taken care of immediately. I was thinking ‘Get that cancer out immediately.’”
And Jacksen came out of the surgery a happy baby, energetic and full of life.
“He’s my first baby, so I thought all babies were like him, but before the surgery Jacksen was a fussy kid,” Amanda said. “He was always moving around, never comfortable, and just crying a lot.”
In comparing Jacksen’s activity and personality over the past year to his same-age cousin, Amanda says she definitely sees differences in behavior patterns.
“It makes sense that Jacksen was fussy: he was discovering this new, glowing world and at the same time he was losing his sight,” she said.
The family knew nothing about retinoblastoma before June, but have connected through social media with many others who have experience with the eye cancer.
St. Jude’s Children’s Research Hospital estimates about 250-300 children in the United States are diagnosed with the cancer annually.
Two types exist: hereditary and non-hereditary. Recent tests show Jacksen’s retinoblastoma was non-hereditary.
“We were grateful when the tests came back and said it wasn’t the genetic type,” Amanda said. “They say that there’s less of a chance it’ll come back if it’s that type.”
After the surgery, Amanda and Jacksen stayed with family for the month of July while he was fitted for his prosthetic eye — a process that took three appointments and lots of patience for everyone.
“He didn’t like the whole process,” Amanda said. “But we joke that he staged this whole thing so he could play with his cousin more.”
Jacksen and Amanda got back to Kauai July 23, a little more than a month after their visit with Hashimoto. Now, they’re preparing for his first birthday party on Sept. 30.
“Jacksen is doing great, he’s tough. He’s a warrior and it’s not holding him back at all,” Jack said.
Amanda is thankful for all the people who coordinated and advocated for Jacksen, and for the doctors at the Children’s Hospital Los Angeles, who all worked with her to get their baby the help he needed.
But it wasn’t just experts that saved her child. Amanda says Jacksen got into surgery quickly because she was listening to her instincts and pushing for help.
“I think it was mother’s intuition what saved him. I moved that specialist appointment up a month,” Amanda said. “We also had people working with us to move mountains.”
She continued: “Jacksen is active and happy now and I think he’s destined for great things. I’m just so grateful.”
Jessica Else, staff writer, can be reached at 245-0452 or at firstname.lastname@example.org.