Ryder’s Fight Club

5 Year Old Twin Brother Battling Brain Cancer. Ryder Yaccarino was diagnosed with a rare form of brain cancer, DLGNT (Diffuse leptomeningeal glioneuronal tumors) the day after his 4th birthday on June 16th 2022. After a spout of several months of unknown “headache like” symptoms, falling asleep at preschool after a full nights sleep and very slight noticeable balance issues, we took him in to CHOC for further testing. After three weeks inpatient and a magnitude of tests, a tumor was found on Ryders spine, unfortunately spreading or what the doctors call “sugaring” up to his brain. Due to rarity of this disease, the cases for Ryder’s tumor are low. Only one in 5 million children have been diagnosed (that’s basically one child every 5 years in Orange County, if we are putting the numbers into perspective). He is currently under a superb team at CHOC (Childrens Hospital Orange County) and has been also seen via virtual assignment by Seattle Childrens, Sick Kids, Toronto and CHLA. All of these professional teams and tumor boards agree on his treatment plan thus far. Ryder has a ventriculoperitoneal (VP) shunt in his brain, this is a permanent piece of narrow plastic tube that drains excess cerebrospinal fluid into his abdomen (belly). This regulates the fluid that sits in and around the ventricles around the brain. He also has a port placed under his skin, it’s a direct access to the vein for blood draws and any infusion he may need. He is currently on a daily dose of an MEK inhibitor/ chemo treatment that he takes nightly at home. This MEK inhibitor is called trametinib and is supposed to block/ stop the cell from dividing, ultimately slowing down the growth of cancer cells. This currently is an incurable type of cancer so the goal today for Ryder is to maintain stable scans and keep the tumors from growing or spreading. We will likely not see a report of NED (no evidence of disease or remission in his lifetime). He will likely be on some form of treatment for the rest of his life, unless science development can deliver a cure. Unfortunately with many brain tumors patients, Ryder also experiences seizures. His type are known as focal seizures, where his body doesn’t convulse, but he stares off into space and his blood pressure rises and his breathing slows down. These are extremely scary as they’re very difficult to detect since there is no physical action other than a very rapid heart beat and sometimes occasional lip smacking. These are what have landed Ryder in the ER and ultimately a prolonged hospital stay for observation. He’s on two different seizure medications as well as a full cannibas treatment panel to help regulate these. Despite all of these treatments and obstacles, Ryder is a happy boy! He’s tolerated the treatment plan well and has been a pretty great trooper. He has a twin brother, Indy that keeps him smiling and on his toes.. truthfully probably the best medicine. He has a love for all things art, loves being outside, riding his bike, digging in the dirt, washing mamas car. He loves his family and his dog, Frankie. He’s a mama’s boy for sure. His big cousin, Addison is his best friend and he will remind us of that daily.