In the Fall of 2022, at the beginning of 5th grade at Orchard Grove Elementary School, Paisley Ramarge of Hagerstown, MD was busy! She was an active track runner and baseball player. Paisley was not your typical athlete- she was playing on all boys’ teams and at age nine and ten, holding her own with 12-year-olds. She was used to pushing herself and thought nothing of running two miles at recess. Paisley knew her limits– so when she felt a pain she did not recognize in her left leg, she was concerned.
Paisley told her parents, Michelle and Mike, about the pain. Several visits to her pediatrician did not help determine the source of the pain – they were dismissed as growing pains. Yet, the pain progressed to the point of keeping Paisley up at night. Finally, Michelle demanded an X-ray, which was obtained after agreeing to see a physical therapist. Following the X-ray, Michelle and Mike were asked to meet the pediatrician at the office after hours, which is how they were informed that Paisley had cancer. They were told it was either a Ewing Sarcoma or osteosarcoma, based on how the tumor wrapped around the femur.
The Ramarges then had to figure out how to tell Paisley. Michelle and Mike arrived home that evening and told Paisley and her older brother, Gavin, that the pain needed further testing. They were referred to both Children’s National Hospital and Johns Hopkins Hospital for treatment. The family selected Hopkins, as it was closer to home, although still 1.5 hours away. Michelle also felt a strong connection to Hopkins oncologist Marti Goldenberg, D.O. after their long conversation discussing where to seek treatment.
Paisley’s official diagnosis was Ewing Sarcoma, which required quick planning and strategizing. Treatment would need to begin right away. Paisley was scheduled for a biopsy almost immediately after arriving at Hopkins. Although only ten at the time, Paisley was Googling her cancer type and asked that the doctors be honest with her. She wanted to know everything. Upon arriving at Hopkins, the family felt safe and trusted every caregiver. They never felt alone. One of the many incredible doctors they met was Christine Pratlias, M.D., who serves on the CCF Scientific Advisory Board. Dr. Pratilas introduced CCF to Paisley and the Ramarge family.
Michelle and Mike took turns staying with Paisley as needed during the early days of diagnosis and treatment with the help of Michelle’s parents, Sandy and Frank. Very quickly after their initial contact with Hopkins, and before any treatment began, the family was informed about cryopreservation, where an ovary would be removed to preserve Paisley’s ability to have children. This was done prior to starting chemotherapy.
Paisley’s demanding treatment schedule (14 cycles of five days ‘on’) meant she had to continue in school through Home Hospital Teaching. Treatment began in November 2022. Paisley suffered through harsh side effects, especially a chemotherapy known as the “red devil.” Paisley lost her hair but discovered that wigs would help make her feel better, and she proudly wore one.
By March 2023, Paisley had the tumor removed from her femur. During the surgery, she also had an experimental procedure that involved removing the fibula from her same leg and placing it inside of a cadaver bone to form a new femur. This was an experimental procedure, not yet approved by the FDA. Adam Levin, M.D. conducted the 16-hour surgery. Just before surgery, Paisley requested a dog and was matched with her beloved Yorkie, Benji. Paisley was told that the entire tumor had been removed with hopeful clean margins. While this was initially amazing news, they were later informed that the tumor had a poor factor of necrosis.
Following the surgery, Paisley was put in a full-body (Spica) cast to assist with keeping her leg in place. She then continued with the 14-cycle treatment plan she started before the surgery. The treatment ended in August 2023. Paisley rang the bell and had the port removed in the fall of 2023.
PET scans along with MRIs and CTs were required every three months. Paisley had several months without treatment before a PET scan showed signs of the tumor in her soft tissue. This meant that treatment needed to begin again, requiring 12 cycles (120 days) of chemotherapy, starting in March 2024 and ending January 2025. At this time, Paisley was part-time when she returned to school. Her hair started to fall out again. She endured 34 treatments of radiation, including four booster treatments which lasted from May to June of 2024. This was administered again by Sahaja Acharya, M.D. She finally rang the bell again in winter 2025!
In February 2025, Paisley underwent surgery for a knock knee to correct her reconstructed leg. She finally started to feel better and was able to ride a bike, walk and golf, without needing crutches! Unfortunately, by May 2025, Paisley had relapsed once again. A PET scan showed something in the pelvic area. Five days before her birthday on May 20th, Paisley started chemotherapy –again. This time it involved two cycles. Scans showed growth. The next best approach for treatment included radiation.
On the last day of 7th grade, Paisley learned she had fractured her leg. She has been on crutches ever since. Additionally, the chemotherapy was determined not to be working by July, returning her to radiation in August, which included 15 treatments before the start of 8th grade.
As of February 2026, Paisley remains on a chemotherapy maintenance via a daily pill. This chemotherapy pill she remains on today allows hair growth, enabling Paisley to embrace her natural hair — but hair loss can be a side effect. She’s hoping to not lose her hair again.
This treatment is designed for adults, not children, but there are no alternatives on the market for children- one of the many reasons that funding is desperately needed to ensure that treatments are available for children battling cancer.
Paisley underwent a hip replacement on February 23 with Dr. Levin. She is recovering with PT to get back on her feet.
Through this journey, Paisley has learned to advocate for herself. She knows to ask questions and does not want anything to be kept from her. She has found strength in her faith and is eager to graduate from 8th grade in June 2026. She will attend North Hagerstown High School in the Fall.
CCF was honored that Paisley shared her journey by presenting at the 10th Annual CCF Research Symposium on June 3, 2026.
