How do you wrap up such an incredible life in just a few sentences?

Journey Rose was one in a billion. She was a spunky yet shy little girl. Loud and bossy when she was in her comfort zone but quietly at her mama’s side when in the company of strangers. She was equally capable of giving the sweetest hugs and keeping her brothers in line. She was adventurous and would point at the tallest mountain while we drove and say “I want to go up there!” She loved to create and draw and color. She often had marker spots on the side of her hand from coloring, because as a lefty, she rubbed her hand into her artwork. She taught herself how to crochet because she couldn’t find a good enough video on YouTube for left handed crocheters. I showed her the basics and she adapted it for herself and then proceeded to make a scarf. She was creative and didn’t mind clutter if it meant surrounding herself with things she loved. She fought for fairness (most often when it was her who was getting the short end of the stick) and we often told her she would make a great lawyer one day. She loved listening to me read Little House on the Prairie and watched the tv series over and over then asked for a dress and bonnet like Mary and Laura wore.

We knew she was stubborn but didn’t realize how much until one day when she was three years old and she wanted me to carry her down the stairs. I had her little brother and some other things to carry so I told her she could walk down herself. She cried and whined and begged and bargained  for me to carry her down.  What she didn’t realize is that she got that stubborn gene from me and I wasn’t going to give in either! I talked her into a few steps here and there but it took a full 30 minutes to get her down to the 3rd step where I compromised and she jumped into my arms for the last few steps! She was a persistent little girl and that determination served her well throughout her life, especially after she was diagnosed.

Shortly after she turned eight, I noticed she was pale and wasn’t hearing well. I took her to the doctor who listened to me and checked her bloodwork. No one wants to get the call where the doctor says “sit down and we’ll discuss her lab results”. The next day she saw a specialist and was admitted directly to the hospital for more tests and a blood transfusion. My heart broke as we laid in her hospital bed that first night. She asked me, “Mama, is leukemia cancer?”. She had seen me go through cancer treatments that year and knew cancer was serious. When her diagnosis came as Myelodysplastic Syndrome we breathed a sigh of relief, until we found out it was a slower growing but harder to cure blood cancer than leukemia is.

She endured two and a half years of intense, experimental treatment to try and eradicate the disease, including three bone marrow transplants from three different donors at three different hospitals in three different states; from her brother at Boston Children’s in Massachusetts, her father at St Jude in Tennessee and an umbilical cord donor at Memorial Sloan Kettering in New York. She endured thousands of lab draws and IV pokes. She took medicines to kill her cancer, alleviate her nausea, boost her appetite, stop her itching, help her sleep, and increase her blood cell production. She met hundreds of doctors and nurses and therapists. She felt the hopefulness of remission and the excruciating defeat of relapse. She spent months at a time in hospitals and, because of Covid, she was many times confined to her tiny hospital room. She went bald three times. She spent weeks and months away from her brothers and missed them and our home terribly. She was the bravest, sweetest, strongest, most courageous little girl. She inspired so many people in her short 10 years and left a legacy of strength, hope and joy. She had an unshakable belief in God who she knew loves her and that faith carried her through all the trials she endured. She never quit fighting, and we will never quit fighting for her to be remembered. We miss her and love her, and we hope to honor her by assisting other brave cancer warriors as they fight.