Rachel's journey began in the fall of 2007 when she was 14 and a freshman at Stadium High School. Her right shoulder, which had been bothering her for a while, was becoming more painful so we made an appointment with her pediatrician for an X-ray and MRI. The X-ray was clear, but the report on the MRI indicated that she might have a distended bursa, and it was recommended that we visit a Sports Medicine clinic. There, we found that it wasn't a joint issue, but instead appeared to be a mass of some kind. Luckily, the doctor at the Sports Medicine clinic knew a mass specialist at Seattle Children's Hospital, and we were able to get an appointment with him two days later.
The doctor at Children's thought it might be a benign tumor and scheduled Rachel for surgery the following Wednesday, November 14. The biopsy performed during surgery was inconclusive which we knew was not a great sign. The mass was not removed at that time since, in the event that a tumor is malignant, the doctors want to leave it in place, shrink it with chemotherapy and radiation, and "calm the edges" before removing it.
While waiting for the more in-depth pathology report on the biopsy, Rachel underwent a number of tests. The main reason for the tests was to gather the information they would need to provide a baseline for further treatment, and to look for any spread of the cancer. Rachel was amazing throughout this grueling time. Even though she just had surgery—with a 3-inch scar to show for it - she went through all of the testing with patience and incredible strength. She said she wasn't scared - certainly more than her family could say!
On November 20, 2007, we got the life-changing news that she had synovial sarcoma - a malignant tumor in her shoulder. The doctors determined the best course of treatment was a combination of chemotherapy and radiation. She began her first chemotherapy treatment on December 5, and then had daily radiation through January. Rachel underwent surgery in late February to remove the tumor, increasing the scar to 7 inches, followed by additional chemotherapy and radiation treatments.
After her first chemotherapy treatment, Rachel had a few crummy days but was soon back to her smiley-self. She got the chance to go back to school and to cheer for her school at basketball games and wrestling matches. As soon as she was able, she got back into soccer and track as well. We figured out how to manage her side effects fairly well, and with her strength and determination she got through all of the treatments and surgeries with flying colors. Rachel finished her treatment protocol in May 2008.
After several years of clear post-treatment scans, we hoped this horrible, scary episode in our lives was behind us. Unfortunately, in her four-year post-treatment scans they found that the cancer had spread to the lining of her right lung. The tumors were in several places in her lung. She had a thoracotomy in April 2012 and they were able to remove the tumors they could see and feel. When she had more scans three months later, they found that the tumors had come back. Over the next three years, Rachel was on constant chemotherapy, endured some radiation, numerous hospitalizations, and an additional surgery when her lung collapsed - such a difficult and intensive path. You can read more about her journey here.
Rachel endured all of the associated pain and other side effects through these years with her beautiful smile and positive attitude intact. She helped and inspired many people along the way, including those she knew well, those she knew only a bit, and those who only knew of her. In an effort to fulfill her dream through the establishment of the Rachel Lynn Henley Foundation, we strive to continue to honor her legacy of helping other children and young adults live with a cancer diagnosis while also working toward finding cures.