Matthew Ceelen

Speaker: Matthew Ceelen, Sarcoma Patient

Matthew Ceelen: Hello, my name is Matthew Ceelen. I am from Milwaukee, Wisconsin. I'm 23 years old right now and I'm 8 years NED, which means no evidence of disease. When I was 14, I was playing high school football scrimmage with my team, intramural football scrimmage, and I went for a tackle, and I was hit by a teammate and broke my arm, broke my left proximal humerus. I went to the hospital and got an X-ray, just thinking it was a broken arm. And actually, my mom, who's a physician assistant, she was in the room, she was taken aside by medical worker, a nurse or a physician assistant themselves, and said you would probably want to look at this X-ray. And there was a clean fracture in my left proximal humerus, but you could see a possible tumor. And so, I had a MRI that night, bone biopsy the day later, and was diagnosed with osteosarcoma. I underwent nine months of MAP chemotherapy, which means methotrexate, doxorubicin, cisplatin. And for those who don't know, pediatric cancer, especially a hard tumor such as osteosarcoma, has the highest concentration of chemotherapy. A higher concentration for adults, much higher. If you gave the same concentration of chemotherapy to adults, it would be fatal. So, underwent nine months of chemotherapy. I started in September, actually two days after my birthday. I had a limb salvage surgery, so a humeral allograft, which means basically just taking a humerus donor bone, and placing it into my humerus, basically after the tumor resection. And then also underwent nine months of immunotherapy, Mifamurtide. There was unfortunately a non-union in my shoulder region and so I underwent also a fibular autograft. So taking the fibula from my left leg and placing it into my arm to allow for my shoulder to work. So, eight years NED and my shoulder, with limited rotation, this is pretty much the most I can do with my arm, but daily activity, it's fairly well. And so, proud to be a survivor and proud to be a patient advocate today.

Matthew Ceelen: My advice is twofold, and it's pretty general, but I feel like it's the most efficacious. The first is that there's going to be people in your life who want to support you, who wanna be with you throughout the whole journey to make sure that you're not alone and that you feel loved and comforted. And whether that's family members, whether that's friends, whether that's medical staff, there's going to be people in your life who want to support you throughout the whole journey, and whatever they can do. And I would just give the advice that you need to accept them, you need to lean on them throughout the whole journey. There's gonna be days that it's gonna be exciting maybe, it's gonna be happy. It's gonna be a good time. And just being able to be with them and celebrate with them in those little moments, but also being able to lean on them during extremely tough times. Points where you feel like it's the lowest you can go, you're gonna have to lean on them and that could be mentally, feeling mentally drained. Or it could be physically, you feel like you just can't get out of bed, you just feel so lethargic or nauseous. Being able to lean on them gets you through those moments and makes the good parts just so much better. And then the second part is to know that there's people who have gone through the same thing that you have. I know every experience is different. And every person is unique, but I was an osteosarcoma patient and osteosarcoma is a rare disease. And I've seen people who had osteosarcoma. I really never would have interacted with them without MIB agents, Osteosarcoma Alliance, the patient advocacy group that I'm in, and being able to interact with them, being able to share stories was incredibly efficacious after I transitioned from patient to survivor, and it helped me transition from survivor to patient advocate as well, but being able to know that there are people out there who have had limb difference, who have had amputation, whether it's in the arm or in the leg, being able to know that there's people out there who have gone through the same thing, and just know that you're not alone. When I was a patient, I really felt like I was going through an odyssey in the sense that every interaction, every chemotherapy round, everything that I was doing was extremely new to me and just uncharted course, which is true. And I do believe that people only know what cancer treatment is like, what a cancer patient goes through, the only people who know that are cancer patients, or survivors. So just being able to know that there's people out there and if they want to reach out, there's places to reach out to survivors or other patients, but in general, just know that there's gonna be people who want to support you and you have to lean on them. And there's gonna be good days, there will be good days, but there's certainly gonna be days that it's gonna be extremely tough, and it's life, you have to take, you have to take beauty in every day you have to take the good that the day gives you, and just capitalize on every single day, and take one day at a time. But again, support, make sure that there's a support system that you can rely on.