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READ MOREPublished on August 26, 2024 in CommunityEOY, Ependymoma, Patient, Stories
Eleven-year-old Kai C. sits down at his piano and masterfully plays his own composed song. The elementary student with an ear for music amazes his mother, Kari, as he improvises and creates pieces. With how effortlessly he moves over the keys, it might be hard to believe that Kai has experienced two recurrences, seven surgeries, 38 radiation sessions, and more since his grade 3 anaplastic ependymoma diagnosis in 2019.
“Whoever is able to sit down and listen to him, you’re just amazed,” Kari said. “There is a hopefulness about it. There’s a calmness about it. There are certain pieces that you could feel the emotion in it. Sometimes, it’s brought tears to my eyes or a huge grin to my face.”
When Kai was three, his family heard the B-I-N-G-O song playing on his toy Casio from the other room and thought it was just the toy’s recording. They were surprised to find Kai, 3, sitting on the floor and playing the song himself. His family was later told Kai has perfect pitch, where he can hear something once and know which notes to play.
Unfortunately, he only made it through three piano lessons before getting sidelined due to severe nausea and vomiting up to seven times each day.
After a week of symptoms, Kari and her husband Vic realized the nausea wasn’t from a stomach virus. This led to extended hospital stays, labs, scans, medications, invasive procedures, and significant weight loss while they tried to reach a diagnosis for their son.
“A number of renowned experienced doctors summed it up to a gastrointestinal issue, even after the headaches began,” Kari said. “Kai was misdiagnosed for six months and even sent to physical therapy for his neck pain, which very likely exacerbated his symptoms.”
A young resident at another ER visit called for a CT scan, suggesting that Kai’s screams of pain might not just be a GI issue. That scan led to two surgeries in three days, a month in the hospital with complications, and a diagnosis that his cancer has an aggressive pattern of recurrence.
Kari and the family knew that ependymoma is a rare cancer — diagnosed in about 230 pediatric patients each year in the U.S. — and Kai would need specialized care that they wouldn’t be able to receive in their home country of Panama.
“Panama is a small country, and there are not as many people here with his diagnosis or doctors who have extensive experience treating this type of cancer,” Kari said.
Kari was born and raised in New York and had dual citizenship in Panama, where her mother is from. She moved to Panama after college, where she met her husband Vic, and where they lived until Kai’s diagnosis. Once Kai was stable enough to leave the hospital, Kari and Vic traveled to New York with Kai, where they stayed at the local Ronald McDonald House and received treatment at Memorial Sloan Kettering (MSK), thanks in large part to the help of Kari’s parents Karen and Milton who were stateside and had previous experience at MSK.
To do so, they left their support network, family, and even Kari’s job behind.
“My husband returned to Panama to work,” Kari explained. “We have bills to pay, and his job is in Panama, so he stayed there, and Kai and I moved here. The trauma from the diagnosis takes a toll on the family. Now, on top of that, you have this physical separation for what’s been five years.”
Unfortunately, this reality means their family unit is together only a few times yearly.
During his initial treatment, Kai picked up piano lessons again while staying at the Ronald McDonald House.
“They have this beautiful playroom and family room with two grand pianos, so he was able to play when we were back from treatment at the hospital,” Kari said. “They even had a volunteer musician who would come by and give him piano lessons so that he could keep it up.”
When the pandemic sent piano lessons to an abrupt halt, Kai began to look up piano tutorials on YouTube to teach himself how to play on his keyboard. When he later resumed lessons at a nearby studio, the teacher quizzed him to find out what he knew.
“My jaw dropped at how much of the technical terms he knew,” Kari said. “He was really paying attention to those online tutorials, and he just had a passion for it.”
At the hospital during treatment, Kai turns to music to pass the time, whether a Child Life specialist brings a keyboard for Kai to play on or he opens a piano app on his tablet.
“I really believe that music is his first language,” Kari said. “If you ask how he composes his music, he can’t tell you the process. It just comes to him.”
Over the past two years, Kai has composed more than 50 original songs, which have helped him navigate treatment and when he is feeling unwell.
“Even though he has performed classical pieces and his own compositions on stage, the best for me is when he’s just sitting at home improvising,” Kari said. “I listen to the masterful ending of a song he just composed. No one else might hear it ever again because it wasn’t captured on video, but that moment is pure joy and genius. In that space, he’s zoned out from anything else, and it’s just a magical moment for him…and for anyone who is fortunate enough to bear witness to it!”
By Kai’s second recurrence, his medical team told Kari and the family that surgery and radiation were no longer a recommended option as the risks outweighed the benefits.
“Basically, our way forward at this point was clinical trials,” Kari explained. “The first thing that came to mind, which probably comes to any parent’s mind, is that a clinical trial means my kid’s going to be a guinea pig, and this is the end.”
Many common misconceptions about clinical trials can cause concern about enrolling in one. These misunderstandings are one of the reasons why the National Brain Tumor Society created the MyTumorID campaign earlier this year to educate patients and care partners about the importance of clinical trials and biomarker testing.
“I was a bit fearful at the beginning until I researched it more and spoke to his doctors,” Kari said. “As we researched more, my perspective changed about clinical trials. It wasn’t so much fear, although that’s always at the back of your mind from day one of diagnosis. My perspective changed to view these clinical trials as opportunities that weren’t available even a year ago.”
Chemotherapy and radiation are traditional treatments for many brain tumors, yet the side effects can drastically affect one’s quality of life. Kari believes clinical trials offer a path to finding other treatments that could one day lead to a cure and better quality of life.
“My perspective changed into thinking this is an opportunity for my child and other children who are going to come after him in the same situation,” Kari said. “He’s helping with that research. He’s helping so that he can potentially be cured, and the next child will have that cure. Every little step we take today can help somebody tomorrow, and the steps people took yesterday are helping us today.”
Kari also encouraged families to ensure they know their child’s tumor’s biomarkers.
“It’s important to get checked for their biomarkers because that’s how you know whether your child will be a match for a clinical trial in the future,” Kari said. “If you have the tumor sample tested at the time of pathology testing and/or have blood tested at the time of routine blood draws, it’s a practical way to get information you may need later down the road.”
Earlier this year, Kai underwent three cycles of CAR-T cell therapy in which his T cells — a type of immune system cell — are re-engineered in the laboratory so they will attack cancer cells as part of a clinical trial. Kari continues to seek other clinical trial opportunities for Kai.
“One of the fortunate things to come of Kai’s diagnosis has been the connections you make along this journey,” Kari said. “Meeting Katherine, NBTS’s patient navigator, was a series of connections.”
Kari used to stay up until 2 a.m. to research clinical trials available after Kai would go to bed until she spoke with Katherine.
Kari explained, “Katherine was able to say, ‘Let me take this off your hands. Let me do that legwork and present you with some clinical trial information summaries.’ It took a load off because she took the time to do that when I didn’t have the time but needed the information.”
Kai’s tumor location near the brainstem and subsequent treatment targeting this area has resulted in ongoing nausea and balance and coordination challenges. Medications like Zofran and physical and occupational therapy have helped improve these side effects, but they have never entirely gone away.
“Kai loves the independence of taking the school bus in the morning, but he deals with morning nausea almost every day,” Kari shared. “I have to wake him up early and prepare for what will likely be a throw-up situation, so we can try to have that happen at home before he gets on the bus.”
Wherever they go, Kari brings along disposable vomit bags. She has also strategically placed these bags around their home so she can easily grab one when needed.
Kari shared, “It doesn’t stop his need to vomit, but at least the situation doesn’t have to escalate by being all over his clothes, all over the floor, and causing an upset kid.”
Imbalance difficulties manifest as needing one-on-one support at school, which is part of his individualized education plan (IEP), and holding his mom’s hand when walking around the block so he doesn’t fall. It also prevents him from fully engaging in school activities like field day or simply running during gym class. At the playground, it’s difficult — and nerve-wracking as a parent — for Kai to enjoy the childhood pleasures of the swings and monkey bars, or even riding a bike with no training wheels.
“I feel bad sometimes, but that’s our reality,” Kari said. “Cancer robs families of fully enjoying milestone moments because we are so ridden with anxiety. When will the other shoe drop?”
Cancer has impacted Kai’s life in major ways, in addition to the developmental obstacles he faces as an autistic kid. During his active treatment, Kai experienced prolonged absences from school on top of daily early-morning appointments for labs and scans. Even when he was tolerating the clinical trial treatment well, he was unable to be at school with his friends for six months because chemo had weakened his immune system. As an only child, this takes a major toll on him socially. He still misses school for regular check-ups and maintenance MRIs when not in active treatment.
Despite his medical challenges, Kari describes Kai as a “love bug who is smiling and laughing 99% of the time,” mainly because he is unaware of the big picture of cancer and how it inevitably and ruthlessly impacts lives.
For adolescents and children like Kai with pediatric brain tumors, it’s time for a better chance.
“I don’t want to have flashes of planning my child’s funeral in the back of my mind,” Kari said. “I want to be able to look forward and say my kid’s going to have this wonderful, long, healthy, amazing life and reach his full potential.”