Oliver Feldman – Demo

Died 1/7/2019

Oliver Feldman was 16 when his right arm began hurting him. At first he thought it was due to a skiing trip with the scouts, nothing seemed to be broken and going to the chiropractor brought some relief. He had also been given the ok from the NP for his sports physical, but the pain continued. Finally after getting an x-ray weeks later, the diagnosis was confirmed by an oncologist – Osteosarcoma.

Oliver loved making art, his favorite was pottery and he learned to wheel throw at the local art center, later studying in his high school seminar program. He painted, drew, built installation pieces made from construction paper at a young age, learned to sew, crochet, and make collage. The last painting he made was the Grinch at a local paint and sip for his best friend’s birthday. He was so proud of that work as he had painted it with his left hand, as osteo had taken his right dominant one. It really was the best in the group.

Oliver also loved anything new, especially technology; he was fascinated with how things worked. He joined two robotics teams and helped to build the robots. After receiving a drone as a gift, he loved to fly it and see the world from the viewpoint of the flying machine.

Oliver loved camping, being in the outdoors and joined scouts at an early age, was a master at making campfires, and got to attend the National Jamboree in 2017. He stuck with the program and had earned Life before his diagnosis. He continued to earn Eagle required badges during his treatment and decided on a project. After all the time in the hospital he knew how important it is to have something that made you smile. He had received many colorful pillowcases through an organization called Ryan’s Case for Smiles, but there were fewer teen options. Oliver had made cases before as part of his family consumer science in middle school. While the organization has chapters all over the country giving to over 100 children’s hospitals, and they have given over 2 million cases, it actually began in the town where we live. Ryan had gone to the same high school as Oliver, also diagnosed with osteosarcoma. His mother had made the cases for some of the other kids at CHOP during treatment and continued after Ryan’s passing. We knew Cindy and Gavin from our church, so despite being deep in treatment, she worked with Oliver planning his Eagle scout project to make 100 cases with teen themed fabric. He died two weeks before the work day, but his troop and church family finished the project on his behalf, earning him Eagle Scout posthumously.

Oliver is known for his wild sense of humor, his great wit, his spontaneity and out of the box thinking. He and his brother Connor regularly would pull pranks on one another. Once for April Fools he put salad dressing in his brother’s conditioner. Another time at Easter he hot glued a raw egg inside a plastic one thus forcing the breaking when it was opened to hopefully get the chocolate inside. Connor would get him back equally well and one year they took turns freezing each other’s underwear and socks. Everyone who knew him enjoyed his smile and laugh. He was a friend to little kids and loved to teach the younger scouts in his troop their skills. Friends recall how he made their classes more interesting, the silly things he would do such as making up songs, his origami skills and magic tricks. Oliver made life more fun, and we continue to walk forward in his example.

Oliver was diagnosed with osteosarcoma in April 2018 with a localized tumor in his right humerus but no additional spread. He was given MAP treatment at CHOP with the plan on having limb salvage surgery in July. His arm broke before they could perform the surgery and as a result the surrounding tissue would have been filled with cancer, so they had to amputate the limb in a forequarter amputation also removing the shoulder. This was incredibly hard, but he focused on ways to do the things he wanted to do with only one arm and got very good at a lot of them. He even learned to tie his shoes one handed the first week, he was amazing. After the third round of MAP a new baseline CT showed the cancer had spread to his lung wall and was not operable. He had a biopsy to confirm osteo and a portion was sent to the MATCH trial with the hopes of finding a drug that could help him. He went on a trial for Cabozapanib for 8 weeks and took trips with family when he could, also attending school. He was an inspiration to his classmates and teachers. After the cabo trial, his cancer more rapidly progressed. We went for a second opinion with Katie Janeway in Boston and were told that MYC amplification was a factor for him, which no one at CHOP had explained. After one treatment of a second trial, Oliver’s body began to struggle and his lungs began filling up. His final weeks were a mix of hospice and oxygen, visits with friends, and doing as many things as he wanted. His scout troop came a few days before he died and made him an Honorary Eagle, so that he would get to experience his court of honor himself. Oliver died peacefully at home on January 7, 2019.

When he was in hospice I asked him if there was something he wanted people to support in his honor, maybe scouts, art, research? He said he wanted people to support research for osteosarcoma “because no one should every have to go through this”. That is why we had his in lieu of flowers go to The Osteosarcoma Collaborative and have been raising money for them ever since. The organization puts all of its donations to researching osteo, finding new treatments, and ways to make life better for osteo patients such as with the surgery decision aid they are supporting. My son had MYC amplification which I didn’t know about until near the end and didn’t know what that meant. With the Osteosarcoma Information FB page I know a lot more, things that I wish I had known though due to the fact patients are treated the same way they have been for 35+ years with 50 YO drugs I don’t think the outcome would have been different. But it should be. We can make that happen, all of us together. The osteo community must make it happen for the kids that will be diagnosed 10 years from now. Those kids need so survive, to thrive, to grow up.

Thank you for reading about Oliver George Feldman, artist, humorist, traveler, scout, animal lover, brother, friend, son, and all around amazing person who lived a great life for 16 years and died from osteosarcoma a week before his 17th birthday. He is deeply loved and deeply missed from our daily lives. There are so many other awesome kids whose lives are forever changed by this disease and far too many of them also going to heaven. Thank you for supporting the collaborative, we need to unlock the mystery of this disease and find a way forward.