Written by lorea
January 18, 2014

In early April of 2013, I received an e-mail from my sister in Kobe, Japan. Her 10-year-old son, Shunsuke, had been diagnosed with an inoperable brain cancer and was going to begin radiation treatment immediately. It was incredulous news and I immediately called her. Through the tears she told me this is a fatal disease with no treatment or cure. It is not hereditary, just simply bad luck. This is Shunsuke’s story.

On the last Friday in March of 2013, Shunsuke complained that he was seeing two Marios when he was playing his favorite video game. My sister took him to an eye doctor who told her he needed to be seen by a neurologist. After meeting with a neurosurgeon and having a CT scan, he was diagnosed with Diffused Pontine Intrinsic Glioma (DPIG). My sister and her husband were told there was no effective treatment or cure, and were urged to do everything they wished to do with Shunsuke while he was healthy. Having DPIG was a death sentence.

Right after receiving this terrible news, I was fortunate enough to have my friend Marc Benioff, who is the major benefactor of the Benioff Children’s Hospital at UCSF, help me get in touch with the doctors at the Pediatric Brain Center. Dr. Gupta, Chief of Pediatric Neurosurgery, responded immediately and, after reviewing the scan, confirmed the diagnosis and explained why this brain cancer is untreatable. He told me if the brain was a sponge, the cancer is water and there is no way to extricate the tumor since it is at the brain stem. I lost my father to lung cancer and my husband to prostate cancer, but I never knew such a cruel cancer existed; DPIG is the worst cancer I could possibly have imagined. With all the advanced medicine we have available today, there is still no cure or effective treatment.

Two weeks after the diagnosis, I flew to Japan and spent a few days with my nephew who was already in the hospital receiving radiation treatment. There was no promise this would provide a cure or any relief, but there was nothing else available except hope to buy some possible quality time for Shunsuke and his family. His neurosurgeon told his parents, “Let’s shoot for one year survival.“ Looking at my 10-year-old nephew bravely going through radiation was one of the hardest things for me. I had to hold back tears in front of him because Shunsuke did not know he was going to die. He was a very bright child and was interested in his own treatment, telling the radiologist, “Please show me how you are going to cure me. I would like to become a doctor when I grow up and help cure other patients.” He was not ready to leave this world. Other than the double vision, he was a lively, perfectly healthy 10-year-old boy.

Shunsuke spent his 11th birthday in the middle of his radiation treatment. His parents were busy planning special family trips for Shunsuke and his younger brother, including a trip to visit my daughter and me in California. Doctors at the Pediatric Brain Center at UCSF had been very supportive, providing my family with a lot of useful information in how to deal with the DPIG. When they heard that Shunsuke was coming to visit us, they offered to see him. They spent an afternoon examining and talking with Shunsuke and his parents through a translator; you could see how much they cared about him. They were instrumental helping us know how to deliver the news to Shunsuke.

After returning home to Japan, his condition progressively worsened. By November of 2013, he could no longer walk and became confined to a wheelchair. In spite of it all, Shunsuke loved to go to school and be with his friends and lived a normal life the best he could until the end. Eventually he was paralyzed and no longer able to speak. His sad journey ended on January 14, 2014, after nine months of a very courageous fight against DPIG.

When I realized there was absolutely no treatment or cure for DPIG available, I decided to start the fight against this horrible pediatric brain cancer in the hope that research could spare other families from this cruel disease. Research for a cancer like DPIG does not receive support or research funding from pharmaceutical companies. Patients are young children who do not have the resources or well-connected friends who will rally to help. Thanks to Marc and Lynn Benioff’s generous matching donation, I was able to raise close to $350,000 since last summer, but this is not enough to achieve our goal of finding a cure. I am grateful that The V Foundation is raising awareness and research funding for the DPIG clinical trial at UCSF.

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