When thinking of a cancer journey, many think of the treatment phase- surgeries, chemotherapy, radiation, maybe even immunotherapy. We tend to forget that, often, that is only the beginning. Samuel was featured last year with his sweet bald head as he was finishing his treatment phase. This year, Sam’s hair has grown back, his port was removed, and his energy level has gone through the roof! Even though his outward appearance is now more “typical", our cancer journey is far from over.  We chose to feature moments from his post treatment/survivorship phase to raise awareness about the side effects of pediatric cancer treatments and stress the importance of continued research and support, the type of support PCFLV offers well into survivorship.  Sam's diagnosis of AT/RT (Atypical Teratoid/Rhabdoid Tumor) is considered a brain and spinal cord cancer, but our first inkling that something was wrong was when Sam's left eyelid began to droop a little. After about 2 months, a pea sized tumor causing the droop had grown to take over his left orbital space and render his eye nonfunctional - it was ultimately removed along with his tumor. Doctors threw every treatment they had at Sam's tumor - intensive chemotherapy cycles, focal proton radiation, a year of maintenance chemotherapy including treatments directly to his spinal fluid - and he found ways to smile through it all (with a lot of help from his hospital-only tablet!). Rare cancers with rare presentations like Sam's don't have a rule book to follow. We are so blessed to have worked with amazing surgeons and our lead oncologist who worked together to create a treatment plan based on their own knowledge and the knowledge of other experts in their fields; however, there is no case quite like Sam's which means no one really knows which course of action is the best one.  Many childhood cancer survivors deal with chronic medical issues that are a result of the harsh treatments they received. Sam lost his eye, but we still need to check for other possible side effects often such as hearing loss, slow growth, and more.  Right now, Sam is nearly a year off treatment with no sign of recurrence or side effects, but it is still scary to know that we're re-writing the game plan as we go. We hope that our story can be an uplifting one to other families who feel like they are alone or struggling with a difficult diagnosis.  We also want to educate and empower others to realize the need for continued research into cancer treatments for increased effectiveness and decreased lifelong side effects. PCFLV has given us the opportunity and amplification to share our story for those reasons which helps us feel like we are giving back to the community that has given us so much.  As part of Sam’s regular work ups to check for treatment-related health issues, he sees cardiology. He was born with a small hole between the two sides of his heart (called an atrial septal defect) which typically is a minor issue. When you add on cancer and repeated exposure to potentially heart damaging chemotherapy drugs, the risk of additional stress to the heart and his little body that is already working so hard to heal is high. Sam had to have countless EKGs and echocardiograms to check on the status of his heart to make sure he was healthy enough to receive treatments. Now that he is not on treatment, cardiology was able to swoop in and quickly place a device to close the hole in his heart with a quick and minimally invasive procedure.  We are so thankful to our team for always keeping his best interest in mind and working hard to limit the need for major surgeries as much as possible. He will still need more intensive intervention to prepare his eye for a prosthetic but for now, Sam is happy and healthy.  One of the big positive sides of being off treatment is that Sam has been able to participate in PCFLV events more regularly! He has met other kids who have experienced the same traumas and can socialize in a safe environment. Watching him have a normal childhood experience of dancing and performing at Camp Smile is a moment I will never forget! PCFLV has brought Sam and our family lifelong friends that can understand in ways no one else can our fears, joys, frustrations, and tears. They fight for the same causes and support Sam the way they would their own child. This organization has brought us community, solidarity, and empowerment as well as unwavering support, generosity, and peace in a time where that is hard to find.  We are so happy to be part of their family  Written by Sam’s mom, Amanda