When you find out that your cousin has cancer it feels scary and devastating and sad. Then when you find out your cousin’s cancer is rare and it can’t be cured, it feels just hopeless. My cousin Joey Luvera was only twelve years old when he was diagnosed with brain cancer. Joey was suffering from headaches at school and couldn’t concentrate. His parents took him to the eye doctor because they thought he probably needed glasses. But, right away, the eye doctor saw something that didn’t look normal and referred him to a brain specialist; that was scary.
When his parents took Joey to Children’s Hospital in Seattle, there were no doctors who wanted to treat Joey’s cancer because our grandpa Paul is a personal injury attorney and he has sued Children’s Hospital and their doctors in the past. The doctors were afraid to help Joey because they didn’t want to get sued. My Uncle Dan and Aunt Kelli felt devastated and didn’t know where to turn. A wonderful doctor, named Dr. Ellenbogen, heard about Joey and offered to treat him. He said his job was to treat and take care of cancer patients and that’s what he was going to do.
Dr. Ellenbogen found two tumors behind Joey’s right eye in his brain. He helped Joey and my Aunt and Uncle make a treatment plan beginning with Chemo Therapy and Radiation. Joey had to be at Children’s Hospital many days each week and his life became a ritual of car rides to the hospital, medical testing and only rare days did he get to attend school with his classmates. The Chemo therapy made him sick and he started to loose weight. It also did not do what it was supposed to do; it did not diminish the cancer. He became sick and could not eat. And, before Joey turned thirteen years old things began to get worse. Joey began to experience back pain and his doctor was concerned. He had to go through many more medical tests and doctor visits. It didn’t take long to find out that Joey had another form of cancer. It was a rare cancer in his spinal fluids. Dr. Ellenbogen said there were two tumors shaped like a pencil one on top of the other. They could not operate on the spinal fluid because it was too risky. That was devastating
Dr. Ellenbogen wasn’t going to give up. He took Joey’s medical case to the Children’s Hospital Tumor Board where a group of Oncologists review complex cancer cases and discuss treatment options, care issues and all aspects of cancer care. The Tumor Board recommended gamma knife surgery for Joey’s brain cancer tumors and they made plans for the brain surgery right after that. Gamma knife surgery doesn’t actually involve cutting out a brain tumor with a scalpel, it is uses high-energy gamma rays to pinpoint and destroy tumors. As a family, we were scared but hopeful of this procedure that could possibly save Joey’s life.
When Joey was just fourteen years old he was fighting two types of cancer. One so deep in his brain that it was dangerous to try to get out and one in his spinal fluid that was so rare that not enough research had been done on it to know what to do. Joey was one of six people in North America that had this spinal cancer. When it was close to the time for surgery Joey went bravely to Children’s Hospital to get it done, but Dr. Ellenbogen was waiting for him with more bad news. He told Joey that the gamma knife surgery could not be done on his brain tumors. They were too close to the nerves of his eyes.
After another two years of chemotherapy, Joey saw Dr. Ellenbogen for the last time at Children’s Hospital. At seventeen years old he was told that they had done everything that could be done but the cancer would not go away. He was sent home and hospice nurses came every day to help Joey with pain management and to help us as his family with the process of dying. What does it mean when your seventeen year old cousin is going to die? It was sad.
In November Joey got to have a huge party with all of his friends through the Make-A-Wish Foundation. His wish was to go to a Husky football game, but he was too sick to go. Retired Coach Jim Lambright heard about Joey and even though he was battling cancer himself at the time, Coach Lambright came to Joey’s party. He gave Joey a Rose Bowl ring, a Husky football helmet and jersey and a football signed by all the Husky players. Joey sat in a chair and held Coach Lambright’s hand. All of his friends from high school and his family were there. I think there were about 200 people there.
At Christmas time we had a party with Santa and presents, but I don’t think Joey knew that he was even there. He was so thin and his eyes were so big. He lay on the couch and we all kissed him and held his hands. He had blankets piled on him and his favorite Huskies purple and gold ski cap on his bald head to keep him warm. We all took turns saying goodbye to him. We cried and we went home to wait I guess. I wish I knew what is the right thing to say or to do when someone is dying? It is so uncomfortable and scary. Then you feel guilty going home to go to bed to sleep knowing you will probably wake up tomorrow morning just fine, but Joey probably wouldn’t wake up ever again.
After a few days, Joey began to eat a little bit. He told his parents that more than anything he wanted to graduate with his senior high school class. It was touching and sad, but the funny thing is that he kept saying it. Every day he told his parents he wanted to graduate with his class and every day he kept eating a little bit. We didn’t think he would make it past Christmas Eve, but he kept on living and kept on talking about graduating from high school. How can someone be so strong on the inside that is so weak on the outside? Joey never lost hope. He believed so strongly that he was going to graduate with his class. Joey’s mom looked at him and felt like he was getting better. At least she thought so. His parents took Joey back to see Dr. Ellenbogen. Joey had rare forms of cancer; so deadly that one in a million survives. Well Joey was that one in a million.
Dr. Ellenbogen did some tests on Joey and couldn’t find the cancer in his brain or in his back. It was gone. After 6 long years of fighting cancer Joey had defeated it. Joey was cancer free and it was a miracle. And of course, Joey got to graduate with his class. His brother Tyler pushed his wheelchair across the podium and the high school Principal handed him his certificate of achievement. She gave the most beautiful speech on how brave and strong Joey was and how he never gave up. His classmates stood up for him and clapped as he held his certificate in his hand with his arm raised up high above his head. He was smiling so brightly that people cried.
After Joey finished his GED he began giving speeches at high schools talking to students about never giving up, to always have hope and to believe in your dreams. Joey made an impact on so many lives.
After he was completely well, he shaved his head in an assembly to raise money for cancer research and he still participates in the Walk for Life every single year. Cancer changed Joey’s life; not only by the physical effects of the scoliosis he developed after the chemotherapy, and short-term memory loss caused by the pressure of the brain tumors, but cancer helped Joey find his passion to influence other peoples lives, including mine.
Lidia Chiabai