Grace lost her battle with osteosarcoma bone cancer September 27, 2023.
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Who Was Grace?
A Positive and Faith-Filled Young Woman's Story Spotlights the Need for Research and New Treatments for Osteosarcoma in Nebraska
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Grace battled osteosarcoma nearly three years. She lost her left arm to cancer then experienced three relapses in her lungs and spine. She was also one of three children in the US to try the immunotherapy drug Vactosertib ahead of a national trial. Her story touched thousands online and continues to create awareness for research and better therapies.
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Grace was 12 when she was diagnosed with high grade, G3 osteosarcoma bone cancer in her left shoulder. Diagnosed near the end of the COVID pandemic, Grace was a remote learner and was participating in a remote PE Class for school. The class was doing a "hold your plank" competition and she felt something pop! Grace went to Nebraska Ortho to have an exam and x-ray where they found a lesion the width of her left shoulder socket and 7" long.
Grace underwent chemo at UNMC from February-May 2021 then received Limb Salvage Surgery (LSS) May 19, 2021 to replace her upper left arm with a prosthetic. She lost mobility and her rotator cuff muscles in the procedure and it left her with a long scar, but she maintained use of her left hand and arm to her elbow. Grace continued with chemo through November. During her 3 month checkup scans, doctors found the cancer spread to her lungs in February 2022.
Grace had VATS thoracic lung surgery February 15, 2022 to remove 38 nodules from her lungs (27 were cancerous). She continued with chemotherapy and became septic with pneumonia in April. She was admitted to the PICU at UNMC and was placed on ventilator a week to help her fight the infections. Grace recovered and continued chemo until September. Attempting to slow the spread and new growth of future cancer, her oncologist placed her on Cabometyx oral maintenance chemotherapy. She could only tolerate the drug for two and a half months due to toxicity. The drug turned her hair gray, caused horrible rashes and stomach pain–but it did not stop the cancer. The osteosarcoma returned with new metastasis in her lungs in January 2023.
She had another VATS thoracic lung surgery a year from the day of her prior surgery February 15, 2023 where doctors removed 17 nodules and the lower lobe of her right lung. Grace elected to not continue with chemo as it was not killing her cancer and explored immunotherapy trials. She was one of three children in the United States to take an experimental drug manufactured in North Korea, called Vactosertib, but it did not stop or slow the growth of the cancer.
In April 2023, doctors found the cancer spread to her cervical spine and she had high dose radiation to slow its spread. By June, the cancer spread to her lumbar spine. Grace elected to do radiation again but several sites were untreatable.
By August 2023, the nodules in Grace's lungs were very large and causing friction in the pleural space of her lungs, making breathing uncomfortable. August 16, 2023 Grace was the first pediatric osteosarcoma patient at UNMC to receive cryoablation on her left lungs to freeze cancer nodules. The procedure made breathing more comfortable for her, but the cancer was spreading too fast. Grace entered hospice and passed after her 15th birthday on September 27, 2023.
Grace was an unbelievable advocate for herself and other children. She was a beautiful warrior who always thought of others and loved to bring those around her happiness and joy. Grace openly shared her faith and Philippians 4:13 gave her courage to keep fighting and have hope. She fought cancer with an infectious positivity and inspired followers around the world. Grace's honesty shined a spotlight on the strain osteosarcoma has on children. Grace loved sunflowers and her mother, Carrie, often wears the flower to advocate for funding and research in Grace's honor. Carrie believes our kids deserve better than the ineffective treatments from the 1970's still used today to fight this aggressive cancer.
Research Info & Updates
Local Research Is Unpacking New Information
Carrie Walks Lincoln Marathon to Raise Awareness 11/5/23
Local Research Is Unpacking New Information
Grace's personal oncologist is leading a study in Nebraska that is working to understand the potential link of pediatric cancer to high nitrate levels in drinking water via the Ogallala Aquifer. All funds will go to support this study to better understand why our area children are getting sick.
Grace's Service and Memorial Information
Carrie Walks Lincoln Marathon to Raise Awareness 11/5/23
Local Research Is Unpacking New Information
Grace planned her funeral before her passing and included many details special to her. Her casket was handmade by Trappist Caskets, her funeral pall was an Indian silk saree to honor her best friend, etc. You can watch the full Celebration of Life service on the Reichmuth Funeral Home website.
Carrie Walks Lincoln Marathon to Raise Awareness 11/5/23
Carrie Walks Lincoln Marathon to Raise Awareness 11/5/23
Carrie Walks Lincoln Marathon to Raise Awareness 11/5/23
Only 6 weeks after Grace's passing, her mom's friend from high school asked if Carrie would walk the Lincoln Half Marathon in honor of Grace. Adorned in Grace's favorite sunflowers, the two greeted the crowd along the route and handed out cards with silk sunflowers to raise money for pediatric cancer research.