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16 adovcate focus cannabis patient care | vol. 3 no. 3 cannapatientcare.com From Pediatric Patient to Teenage CEO: One Young Woman's Journey with Medical Cannabis B Y E R I N M C E V O Y Life as a Patient and Cannabis as a Treatment At first glance, 16-year-old Rylie Maedler lives an average life in Delaware, but behind her ever-present smile is an incredi- ble story. Rylie's childhood was turned upside down with a life threatening diagnosis. "In second grade, I was diagnosed with aggressive giant cell granuloma bone tumors. They ate away my palate, maxilla, left sinus, and the bottom of my eye orbit. I was supposed to be left with no teeth and be deformed for the rest of my life," Rylie explained. "My doctors told me that I should go on chemo, denosumab, or interferon. Those are the treatment protocols that are standard for this tumor." Rylie's mother, Janie Maedler, was able to negotiate a "watch and wait" period to research alternative options to relieve Rylie's pain. Cannabis continually popped up, so they decided to try it, though it was not legal in the state of Delaware at the time. There was not much research on cannabis for this type of tumor, so it was trial and error for a while. "I tried THC and CBD, and I gave her THCA, once I could find it," Janie re- calls. "I separated them so that we could give them at differ- ent times. We had to play with the dosing to find the right va- riety of plant extract that agreed with her. In the beginning, there were a few times where I would start her on a THC and it would make her feel anxious or it might upset her stomach, and then we would change to another," said Janie. "Right away, we saw good results in my pain and swell- ing, and only a few months later, we saw bone regenera- tion and tumor shrinkage, which we didn't expect at all," said Rylie. "From just using cannabis, I didn't have to use chemo, interferon, or any sort of radiation, and I've been in remission for nine years." Today, Rylie continues to take CBD and THCA in oil form daily as a maintenance regimen and for epilepsy, which started 10 days after one of her procedures as a child. She continues to get scans every two years. However, with the overwhelming challenges and success with cannabis as a treatment, Rylie also met with the lack of education around cannabis and the stigma assigned to it. "When we first came out to the public about me taking can- nabis, a lot of the kids in my elementary school didn't real- ly know what it was, but a lot of their parents told them to stay away from me because I would be a bad influence, or they were scared of me somehow sharing my medicine," said Rylie. "You know those drug videos that they show in gym class talk- ing about different drugs? Well, as a patient, I have been forced to watch those videos. Whenever they would talk about canna- bis, they would just show it as a drug and they would talk about how it can make you go insane, cause psychosis, and make your IQ drop. It would always make me feel so uncomfortable to watch those videos in class because it's not true." As a result, the beginning of her efforts to change the stig- ma around cannabis started early in her life. "As I got older, once I was in fifth grade, people definitely started to get more used to it, and as years have gone on, people have been more comfortable," she said. The challenges of the stigma may have lessened in some ar- eas, but Rylie still encountered other resistance within the can- nabis industry itself. "I've had trouble being taken seriously Rylie Maedler has led an amazing journey from pediatric patient to teenage advocate. As a child, she was diagnosed with a rare form of cancer with a high recurrence rate and, through treatment with cannabis, is now in remission. She shares her incredible story to change laws and hearts with her powerful message. Rylie has presented around the world, petitioned lawmakers, organized and currently runs a foundation and a nonprofit, and has been featured in documentaries. In this in-depth interview, Rylie shares her motivation for education on alternative pediatric treatments, the challenges she faces in her work, and her ongoing efforts through her organizations to ensure access to medical cannabis.