Jayvis Ilar is a 14-year-old from Kāne‘ohe who was diagnosed with a rare and aggressive type of brain cancer called diffuse intrinsic pontine gliomas, also known as DIPG, last October. His family has been trying to spread the word about his diagnosis in order to raise money for this incurable disease.
DIPG are highly aggressive glial brain tumors found at the base of the brain and typically only found in children. DIPG affects the lowest part of the brainstem called the pons, which controls the body’s movement functions such as breathing, blood pressure, the five senses, muscles and heart rate.
Life expectancy for this kind of cancer is generally nine months after diagnosis, which means it is a very deadly cancer. Ilar has been receiving treatment, including radiation and steroid treatments, from Kapi‘olani Women’s and Children’s Hospital in Honolulu.
The Ilars found out about his condition right after his 14th birthday when he and his family noticed that the right side of his body was weak and the right side of his face started drooping.
“We thought he had a stroke,” said his aunt Krystle Ilar.
Last November, right after his diagnosis, Ilar was planning on going to one of the Bruno Mars concerts at the Aloha Stadium. Once he and his family arrived in the parking lot, he became unresponsive and was rushed to the hospital. Even though he missed the concert, he received a signed poster with a message from Bruno Mars.
An array of other celebrities have also publicly supported Ilar, due to his aunt’s sharing of his diagnosis. Comedian Jo Koy came to his hospital room and spent the day with him and his family. The Rock sent a video message to Ilar, saying “stay strong.”
Despite the outpouring of support, Ilar’s tumor has continued to grow. Recent tests show that his tumor has doubled in size causing him to have double vision and weakness on the right side of his body.
His mother Jolani Ilar said, “He has been a trooper and had to grow up faster than he had to. Not even a lot of adults would be able to go through what he has and still continue to have a positive outlook and have laughs every day.”
His aunt added, “Jayvis got through radiation like a champ. He has been going through this with a great attitude and while some days are harder than others, he doesn’t give up.”
Ilar’s faith in God is helping him get through his sickness. He has been learning and performing sign-dance for New Hope Windward’s School of Dance with his cousins and uncle.
“Dancing for church has helped Jayvis get his mind off of his diagnosis and helped him regain his joy as he has been going through this tough and painful journey,” said his aunt.
He has also started working with a tutor as he is not able to attend his classes at Castle High School, where he is a freshman.
“He looks forward to seeing his math tutor as he is so motivated to get his math credit,” his mom said.
The Ilar family asks that people pray for Jayvis daily and support the Facebook page “Jayvis Strong,” which includes daily updates of his diagnosis and his journey battling DIPG.
by Madelyn Barr, Ka ‘Ohana Staff Reporter
