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Ollie's Story

Oliver “Ollie” was officially diagnosed with Stage 4, nonresectable Rhabdomyosarcoma on Monday, March 16, 2018. At the time, he was 15 months old. We went into the ER on a Monday because Ollie was screaming and crying for about 30 minutes every time he’d urinate. By Friday of that week, through biopsy, we discovered he had Rhabdomyosarcoma-an extremely rare childhood cancer. At the time of the diagnosis, the tumor was about 9 cm long and 8 cm wide stemming from his prostate and growing upward towards his bladder. Because of the placement and the size, the tumor pushed against his urethra causing extremely painful urination and uncomfortable bowel movements. For most of Ollie’s journey, he’s had some level of urinary catheter to help alleviate pain-he currently has a suprapubic catheter that can be accessed or closed off as needed through the use of a Mic-Key button. Because his pain was so extreme, Ollie spent much of his time in the hospital hooked up on morphine which then he had to wean off of with the help of methadone; he then spent nearly a year and a half reliant on heavy pain medication until the tumor began to shrink.

In addition to the standard chemotherapy protocol that lasted nearly two years including six months of a maintenance chemo, Ollie did qualify for a clinical trial chemo drug which would would cause mouth sores that would sometimes become infected. Because chemo affected his appetite so much, he required a feeding tube for a few months early on until we discovered the magic of spaghetti and Mac & Cheese which he ate voraciously and concurrently packed on weight. Ollie also underwent six weeks of proton beam radiation therapy at week 13 of his therapy roadmap for which he had to be sedated during each session because he was so young. He began radiation at 18 months old. Ollie’s tumor reduced by half within the first few months of chemo, but swelled back up after radiation which then caused increased pain again. Thankfully, tumor seems to be staying dead and slowly shrinking.

After the countless hospital stays, chemotherapy infusions , radiation sessions, scans, procedures, therapies, and medications, Ollie was finally put in remission in March 2020 just in time for the Coronavirus pandemic to overtake the world and put us right back into isolation. Throughout it all, Ollie fared amazingly well and often much better than expected, but chemo was extremely hard on his tiny little body. Ollie’s journey has been anything but easy, but he is such a tough and brave little fighter that continues to push the odds and write his own story. As of August 2024, Ollie’s pain has diminished significantly, and his side effects are manageable enough that he was finally was able to begin public school!