Inspire 2019 SPRING
CMN: Kapi‘olani’s 2019 CMN Champion: Lily Lyman
Lily Lyman loves colorful LEGO. “I like taking my time, kind of figuring out how to do it and seeing exactly what I need,” the 13-year-old said. She tackles every building project one block at a time—the same way the young teen has rebuilt her life after a battle with cancer.
In late 2011, Lily started to feel off balance. When it didn’t get better, and other unexplained symptoms followed, her parents, Christopher and Misty, kept returning to her pediatrician. After months, Lily went for an MRI at Kapi‘olani Medical Center for Women & Children. The scan revealed a tumor at the base of her brain. Lily had medulloblastoma.
“It was devastating,” said Misty, Lily’s mom. “We didn't think that would come out on the MRI.”
The then 6-year-old was rushed into surgery that same week. “It was necessary to ensure this type of cancer wouldn’t return,” said Dr. Desiree Medeiros, Lily’s pediatric oncologist. After surgery, the little girl was transferred to the Pediatric Ambulatory Unit and Wilcox Pediatric Unit for follow-up care.
“I remember, every time I got a shot or something I would cry,” Lily said. “So, I just try to keep a smile. Even if there is a lot of pain, I just try to get through it and of course it's really easier once it's all over.”
The aggressive treatment that followed included intensive chemotherapy and radiation which often left Lily feeling sick and unable to eat.
“Both the radiation therapy and some of the chemotherapy medicines that Lily received can cause problems with hearing and she had pretty severe hearing loss,” Dr. Medeiros said. Hearing aids weren’t enough, so Lily returned to Kapi‘olani for cochlear implant surgery. A sound processor on the outside of the ear captures sound, codes it, and sends it to an implant inserted under the skin, which creates the impulses that the brain interprets as sound.
"She has help from Rehabilitation Services at Kapi‘olani, and with cochlear implants, she has been able to regain most of her hearing," said Christopher, Lily’s dad. “It takes a lot of work and that's one thing that we've had to do with Lily. It doesn't just come overnight.”
Regular visits with Kapi‘olani pediatric audiologists are helping Lily adjust. The surgery is the first part of the process, then the Kapi‘olani team works to customize the cochlear implants to meet her needs. “We program it for different hearing levels and we code it so that it allows her to hear the sound that it picks up from the environment,” said Ann Narimasu-Phomenone, Lily’s audiology therapist.
“At Kapi‘olani we're fortunate enough to offer auditory verbal therapy, which isn't offered anywhere else in the state,” said Kimi Perez, her speech language pathologist. “It’s an oral approach that takes away all of the visual aids so kids have to rely on their ears alone, which ends up with a higher success rate in speaking and hearing.”
It’s important for therapists to understand exactly what Lily hears, down to specific pitches. “If she can't hear the high pitch, she may not hear ‘s’ and ‘t’ sounds that clearly and then won’t perceive them correctly for example when she's listening to her teachers at school,” Ann said.
What Lily hears also affects how she speaks. “I help her to take that electrical signal that her cochlear implant sends and translate it, so it makes sense in her brain,” said Kimi. “We have lots of fun activities so the kids think that they're playing, but actually they're just doing therapy.” Brain exercises can include card games that focus on pronouncing a certain letter in the alphabet or board games that require specific verbal responses.
“Kap‘iolani hospital really helps me, and they don’t help me just because they need to — they help me because they want to and they make it fun!” Lily says.
Lily has had the support of so many specialists only available at Hawai‘i’s Children’s Miracle Network Hospital. Her care team at Kapi‘olani Medical Center includes professionals in the fields of speech therapy, audiology, psychology, neurology and endocrinology, in addition to her oncology team.
“Lily went through a lot for her cancer treatment,” said Dr. Medeiros. “It’s really important for us to continue to follow children, like Lily, so that they can also get care for the side effects from the treatment that we see.”
Staff and specialists supported the Lymans through Lily’s treatment, and the family is grateful for the comfort they received and welcoming atmosphere.
“What I didn’t realize for a long time was that Kapi‘olani is a not-for-profit,” dad Christopher said. “I think when you go to a store and they're asking for donations for Children's Miracle Network, you don’t see it—but being on the receiving end of it, it's huge.”
Lily’s resilience, positive attitude and desire to help others makes her a real role model. That’s why she was chosen as the 2019 Hawai‘i Children’s Miracle Network Champion and will spend the year advocating for Hawai‘i’s only Children’s Miracle Network Hospital.
“I think Lily’s going to be a great champion because her positivity is so effortless,” mom Misty said. “There's something magnetic about it, you want to be around people like that and you want to help people like that.”
“I’m really excited to help people and I'm really excited to come up with different ways for fundraising,” Lily said.
Every CMN Champion creates a signature pin for their ambassador year. Lily has selected a lily flower in purple, her favorite color. The flower not only reflects her name, but of the beauty and resilience of nature.
“I want people to see my pin and think of someone who survived cancer, broke through hearing loss and can still do all these things,” Lily said.