Olivia started this journey in December 2022. One day, she pointed out that she had a large lump in her hip/buttocks, so I immediately scheduled an office visit with her pediatrician. After an ultrasound, CT, and MRI- she was referred urgently to Norton Children’s in Lousiville, Kentucky.
After a biopsy, it confirmed she had stage IV cancer with a nodule in her right lung. While waiting for that, Olivia was also diagnosed with Type I Diabetes. After 23 very long days, we were told the cancer was CIC-DUX4 sarcoma, which is extremely rare (less than 1% of sarcoma cancers). This cancer is very aggressive/high grade with no symptoms or signs except a lump that may or may not be painful or detectable and may or may not respond to Ewing’s protocol. Other than that, the rest is unknown to the cancer world because there is no research. Once we were told it was so rare that very little research was known and didn’t have its own “protocol,” we requested to be referred to St. Jude Children’s Research Hospital. The next day we were told St. Jude would not accept her because they had never seen this type of cancer before nor know anything about it. Many calls were placed, and no facilities were willing to take Olivia. Fast forward to the next week, Olivia started a very aggressive chemotherapy treatment plan. After six weeks, the nodule was gone, and the sarcoma shrunk slightly. Another six weeks passed, and it was time for surgery to remove the sarcoma.
Olivia started adjuvant chemotherapy in May post-surgery after hearing she had clear margins with no detectable cancer present. After the first chemo, c-diff appeared with severe inflammation within the entire GI system. After the second bilateral pneumonia, pleural effusions, AKI, she lost 22 lbs. After the third, severe proctitis and severe cellulitis appeared. At that time, it was decided her body could not handle chemo anymore, so we put all our faith in God. She will have repeat scans every three months for the next two years. She is currently thriving.
Written by the mother of Olivia