On September 17, 2012 Max walked home from school as usual. His backpack was heavy with books and papers. When he got home he complained that his right side hurt. He thought that maybe he pulled a muscle. Later that night, in the middle of the night, the pain woke Max from his sleep. He thought that if he took a hot bath it would ease the pain, which by now so was bad that his hands shook as he turned the faucet handle.
The pain didn’t subside, but Max was able to go back to bed and fall asleep after sitting in the hot water. The next morning Max’s pain was still there, but it had turned into a dull ache. His mom took him to the pediatrician anyway. She didn’t care if she was being overly cautious. Once at the pediatrician’s office, Max was examined by Dr. Hugh Scott. This was the same doctor who saw Max when he was only ten days old.
Dr. Scott listened to Max’s symptoms and felt his abdomen and right side. He didn’t feel anything unusual, but he sent Max for an ultrasound because he didn’t like where the pain was located and he thought it would quickly rule out anything bad. The ultrasound wasn’t very helpful though, because something appeared to be blocking Max’s pancreas. So he was sent for more tests: a CT scan and an MRI.
The results revealed that there was a 3 inch mass in his abdomen. Within a week, on September 24, 2012, Max was told that he had liver cancer. How could a 15 year-old boy have liver cancer? Not only that, the type of liver cancer that he had was rare, only 200 cases were diagnosed annually world-wide. Fibrolamellar Hepatocellular Carcinoma.
In Stowe, VT
Since 2012 the Fibrolamellar Cancer Foundation has sponsored an annual patient and family gathering at the Lake Mansfield Trout Club in Stowe, Vermont. We went there in 2013 and met many other Fibro patients, their families, and the group of wonderful people who run the FCF. We listened to a talk by Sandy Simon, who runs the Fibrolamellar research clinic at Rockefeller University in NYC and were entertained by Josh Panda, who performed a song that he wrote for the Fibro Foundation.
Max had tried chemotherapy before our trip, but while in Vermont we learned about other possible therapies to try. When we returned to St. Jude we consulted with an interventional radiologist who was able to perform a microwave ablation and destroy over 75% of Max’s liver tumor. Although the primary liver tumor may have been under control at that point, Max’s cancer had already metastasized to his abdomen, lungs and lymph nodes. After complication after complication, Max passed away on September 5, 2014. We wrote about him in this obituary
John Maximilian (“Max”) von Cannon Burdette, 17, left this world peacefully in his sleep, holding his mother’s hand, at his home in Germantown, TN on Friday, September 5, 2014 from complications due to a rare live cancer (Fibrolamellar Hepatocellular Carcinoma (FHCC)). Max was born on June 26, 1997 in Memphis, Tennessee to Christina Marie von Cannon Burdette and Paul Ernest Burdette, Jr. An accomplished musician, Max played the piano, bass guitar, guitar and ukulele. He was a gifted artist, glass blower, and whip maker. His love for duct tape was unsurpassed. He was an avid motorcyclist and loved to attend Bike Night on Beale. Max earned his black belt in taekwondo and was a pinewood derby champion as a student at Our Lady of Perpetual Help Catholic School. He graduated Germantown Middle School and was enrolled in the International Baccalaureate program at Germantown High School, where he was a member of the Rugby Team (#8) and the German Club. Max was a true leader, never a follower. He was stubborn, strong-willed, opinionated, and made a lasting impression on anyone who ever met him. Max was preceded in death by his paternal grandfather, Paul Ernest Burdette, Sr. He is survived by his parents, his big brother, Paul Alexander von Cannon Burdette, his little sister, Nicole Helene von Cannon Burdette, his Omi (Rosemarie Hirsch von Cannon), his maternal grandfather (Merle von Cannon), his paternal grandmother (Betty Burdette), his aunt (Stephanie von Cannon), his cousin (Hatchee Tiana Rose von Cannon Duda), and many other aunts, uncles, and cousins. He is also survived by his other mother, Lisa A. Walters, who moved heaven and earth to find a cure for Max’s cancer, his pseudo-big brother, Andrew K. Walters, and his beloved chartreux cat, Dixie.
A celebration of Max’s life will be held at 5 p.m. on Wednesday, September 10, 2014 at Our Lady of Perpetual Help Church at 8151 Poplar Avenue in Germantown, TN with a reception to follow in St. Therese Hall. In lieu of flowers, the family requests that donations be made in Max’s honor to either the Fibrolamellar Cancer Foundation (fibrofoundation.org) at 20 Horseneck Lane, 2nd Flr. Greenwich, CT 06830 or St. Jude Children’s Research Hospital in Memphis, TN.
The family extends special thanks and gratitude to Terri Wood, Max’s home-health nurse, Virginia Green, Drs. Rajoo Thapa and Wayne Furman, Max’s oncologists, Drs. Salil Joshi, Dr. Robert Gold, and Kim Proctor, NP, Max’s interventional radiology team, and all of the healthcare providers at St. Jude Children’s Research Hospital. A special thank you to Dr. Hugh Scott at Pediatrics East, who had the wisdom and cared enough to order the ultrasound that discovered Max’s illness, which granted him the opportunity to stay with us a little while longer.
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