Sam was a 7th grader at BLMS in the Fall of 2015. While he can't play his favorite sports right now, he can't wait to get back to playing Skyline Youth Football, Skyline Select Basketball and Skyline Lacrosse. He is an outgoing, loving and easy-going kid who likes everyone. People love his sense of humor and his zest for life.
In September I (Kellea) took Sam to his doctor because he had experienced intermittent severe headaches that were causing him to throw-up. We were referred to a neurologist and after an EEG, it was determined that he was having migraines. The headaches ceased until December when he had another one. Following that headache, Sam complained of blurry vision off and on. I decided to take him to an eye doctor before we were leaving town for Sun Valley.
2 p.m.- We went to see an eye doctor at Swedish Hospital. He noticed that Sam’s optic nerves were swollen and that is an indication of spinal fluid build-up in the brain. After talking to the head of neurology at Swedish, he walked us to the ER for more tests
5 p.m.- Sam was given an MRI. We were told that Sam has a 3 cm tumor in his brain and directed to Children’s Hospital to meet with pediatric neurologist.
8:30 p.m.- Sam was given a C-Scan at Children’s Hospital. The results confirmed that Sam has a tumor but not what kind of tumor it is. The tumor is blocking the normal flow of spinal fluid which was causing dangerous pressure in the brain. We were told that we would be checking into the hospital and more information would come the following day.
1:00 a.m.- We were checked into a room at Children’s Hospital.
December 24th- The neurology team met to look over Sam’s C-Scan. They decided he would need a biopsy to determine the exact kind of tumor. The biopsy was scheduled for December 26th at 7:30 am.
December 26th- The biopsy showed that Sam’s tumor is an astrocytoma… solid and not operable because it is located on his optic nerves. These are typically low grade….meaning they are slow growing and do not spread to other parts of the body. They are usually removed surgically but Sam’s cannot because of the location. Sam was given a shunt to redirect the spinal fluid. He will likely have the shunt for the rest of his life.
December 29th- Sam is released from hospital and we are told that the oncology department would call us to discuss further treatment of the tumor.
December 31st- Brain Tumor board met to discuss Sam’s tumor. We received a phone call asking us to come and meet with oncologist on Jan. 7th.
January 7th- Jeff, Sam and I met with Dr. Olson, pediatric neuro-oncologist. He informed us that Sam will need 14 months of chemotherapy once a week to stop the growth of his tumor since it is in a location that makes it inoperable but dangerous to his health.
January 15th-19th- We are headed to Disneyland as a family for some sun and fun. We want to get Sam energized and ready for the battle ahead.
Next Steps- Sam will have a port surgically implanted on January 20th and chemotherapy will begin on January 21st. He will receive the chemotherapy at Children’s Hospital for 2-3 hours each week. Typically, 1/3rd of kids with tumors like Sam’s do not need further treatment after this 14 months. If the tumor does not stop growing, they try different chemo medicines with the goal being to get them to adulthood so they can use radiation if needed. (radiation is not used on developing brains unless absolutely necessary). Sam’s chemotherapy medicine is about a 4.5 on a scale of 1-10 with 10 being the harshest. He will lose his hair and be at risk for infections while in treatment.
Dr. Jim Olson also works at Fred Hutchinson. He is the founder of www.projectviolet.org a non-profit foundation that works to find cures to pediatric brain tumors. Project Violet is a philanthropic effort to drive early drug discovery at Fred Hutchinson Cancer Research Center. Viable drug candidates may be developed for patients at Blaze Bioscience or other potential partners. Fred Hutchinson Cancer Research Center and certain investigators have equity interests in Blaze. You can also google Olson lab 6 in the news to learn more about what he is doing.