“‘Live life to the fullest’ — I have finally learned the true meaning of that phrase,” Jorey Cantu said in a recent interview. The 18-year-old actress remains in high spirits despite her fears of having a seizure every day. In
“‘Live life to the fullest’ — I have finally learned the true meaning of that phrase,” Jorey Cantu said in a recent interview.
The 18-year-old actress remains in high spirits despite her fears of having a seizure every day. In fourth grade she was diagnosed with epilepsy and this year she was informed of an extremely rare, lime-size tumor that has been growing dangerously close to her brain.
“The greatest lesson I have learned with this condition is to live life to the fullest every day and not rely on tomorrow because tomorrow isn’t promised,” she said.
Stacie Cantu said since middle school her daughter Jorey was treated differently and often teased because of her condition. She believes the reason why people treat others differently is due to lack of information of that person and being concerned only with oneself.
“We are so tech driven and concerned about ourselves that we become isolated in our own little world and do not take time to really listen to life stories from others who may be struggling,” she said. “I never really listened to people and understood their life story until Jorey’s condition, then I became interested in other people’s life struggle and their way in always pushing forward.”
At age 16, Jorey Cantu experienced what is known to be one of the worst types of seizure, called the grand mall seizure, which can cause a person to fall to the ground, shake violently and foam at the mouth.
Jaxey Cantu has saved her big sister’s life by calling the emergency room. A grand mall seizure can be life threatening, causing severe brain damage.
Jorey Cantu joined Community Theater and KPAC Production at age 12. She had the lead role in four of the 12 plays she participated in. Instead of stage fright, she has a greater fear of having a seizure during the performance.
“I always take my medication on time to prevent any type of seizure — experiencing a grand mall seizure on stage would be my worst fear.” she said. “It has been difficult to concentrate and stay focused when having an absent or petit mall seizure on stage.
“Theater is all about ‘in the moment’ and even a minor seizure can cause someone to lose the moment and jeopardize the entire play,” she said.
Although Jorey Cantu has at least one and up to 10 petit mall seizures a day, she does not allow that to be an obstacle in her life.
“I don’t want my medical condition to become who I am. I want to be just as good and even better than those who don’t have epilepsy,” she said. “My condition shouldn’t be in the way of fulfilling my dreams.”
Epilepsy is more likely to be controlled as a patient gets older; Jorey Cantu’s medical condition has only worsened.
This year she participated in a KPAC production of Footloose and experienced more than normal petit seizures and severe headaches during rehearsals.
Her mother decided to bring her daughter to Wilcox Memorial Hospital. The doctors realized that Jorey Cantu had a tumor directly behind her nose and dangerously close to her brain. The tumor was 5 centimeters in diameter, about the same size of a lime.
After being referred to a few doctors, she finally met Dr. Adachi, a nose, ear and throat specialist. She suggested a biopsy.
Jorey Cantu and family members decided to follow through with a biopsy after the KPAC production. She had a major role and theater meant so much to her that she wanted to complete the last play of her senior year.
She finished Footloose strong and a few days later eagerly flew to The Queens Medical Center on O‘ahu with high hopes of being relieved of all these problems.
Adachi told Stacie Cantu that her daughter was the first smiling patient she ever had.
But the surgeons could not remove the tumor because another problem was brought to their attention. Usually, tumors are fibrous — hers was not.
This unusual tumor sits on a bone that separates a sphenoid cavity from the brain cavity. When surgeons tried to remove it the bone was too fragile and sunk into the brain cavity. Instead of causing harm, surgeons decided to stop immediately and wait for further research.
For weeks, Jorey Cantu and her family played a waiting game. Questions like “What is it? Is it cancerous? Is it removable?” were left unanswered, leaving the Cantu family anxious and worried.
“I didn’t know how to feel about it because I didn’t know how to comprehend what was happening to me,” Jorey Cantu said. “It felt like a bad dream; it didn’t seem real.”
Amidst the worry, Stacie Cantu felt the love of the Kaua‘i people.
“I believe Kaua‘i is the perfect place to have a condition such as this,” she said. “Word of mouth is such a strong tool in receiving comfort because everyone here is so compassionate and caring.”
Stacie Cantu explains that everywhere they would go people would always be so willing to help in any way they could.
“In the time of waiting for answers, we were so worried but the people of Kaua‘i has incredibly helped our family stay strong with their continuous amounts of love,” she said.
After a few weeks of waiting, the Cantu family got a call from the doctor concerning the tumor. That night friends and family got together at a restaurant to discuss the news.
“When we found out it wasn’t cancerous we went crazy!” Jorey Cantu excitedly said with a smile. “It was the best dinner of my life — celebrating the best news of my life with my entire family and closest friends.”
Adachi explained that the tumor is called psamommatoid ossifying fibroma, which is a rare aggressive benign tumor.
This type of tumor eats or disintegrates the surrounding bone it touches, which explains why the bone sunk into the brain cavity when doctors tried to remove it.
Doctors don’t have much information about this type of tumor because it is so uncommon and located dangerously close to the brain.
“When we learned that … it only occurs in 0.5 percent of the population, it felt that we just took a step back to the beginning,” Jorey Cantu said. “We thought it would all be over soon, but again we are left in another waiting game.
“Through all this continuous bad news I can’t feel bad for myself because there are so many other people counting their last days with much worse illnesses but yet they wake up smiling,” she said. “Through all this I am just so thankful for my family and friends because they keep me thankful everyday.”
At first Stacie Cantu was hesitant to talk to The Garden Island about her daughter’s experience, but agreed to so she could thank the Kaua‘i people.
“I feel bad in taking a spot in the paper about Jorey’s condition because I know people are dealing with death every day and having conditions a hundred times worse then hers.” she said. “I just want to use this space to thank everyone who has been with us from the beginning. Your prayers and support have helped Jorey and our family stay strong.”
Jorey Cantu is going to Notre Dame de Namur in Belmont, Calif., to major in musical theater and to pursue a masters in education.
“I plan to start a foundation called Epi-Teen, which would allow those who have epilepsy to come together and to help raise money for further research in finding a cure,” she said.
As of press time, the Cantu family had not found a doctor who specializes in this type of tumor. The Cantu family can be reached via e-mail at milpon2@hotmail.com.
