Rose is a very positive person and has an unrelenting ability to keep moving forward. She almost never complains and is very patient in dealing with her medical challenges. She loves our dog and all things art. She is even working on ways to take photos using her wheelchair joystick as a tripod.
Rose was diagnosed with B-Cell Acute Lymphoblastic Leukemia on July 6th, 2022. Fifteen months before Rose was diagnosed with cancer she became very ill. It’s a long story but in the Spring of 2022 Rose’s GI system began to fail. She became unable to tolerate even feeding tube feedings. In an attempt to help, she had surgery to have a different feeding tube placed. During the surgery she sustained a spinal cord injury and hasn’t been able to sit, stand or walk since. The surgery didn’t work so Rose is fed through IV’s.
In 2022 Rose had major spinal surgery and spent 260 days in five hospitals in five different cities. She came home in December of 2022. In Jul, routine labs showed leukemia. The doctors can’t find a connection between Rose’s other medical issues and the leukemia. On July 6, 2022 Rose was admitted to KU Medical Center. She spent over 11 months in the hospital receiving cancer treatment. She is so thrilled to be home and is bravely facing the next 18 months of cancer therapy while still learning how to live as a power wheelchair user.
Rose spent 11 months in the hospital getting chemo. She had several surgeries and procedures during treatment. Everything was more complicated due to her other medical issues. She had brain surgery to place a port in her brain to get chemo. There were many complications from that surgery. She has battled through many infections and intense headaches from leaking spinal fluid.
Her biggest limitations are related to her spinal cord injury and using a power wheelchair. She has a lot of fatigue and has a hard time being out of bed for long periods of time. She is working to regain stamina but fatigue is a big battle every day.
Our family is very close and having Rose in the hospital was very hard on everyone. Rose says the hardest part of all of this was being apart. Rose spent two birthdays, two Thanksgivings and two Christmases’ in the hospital. Our family is hopeful that in 2024 we will enjoy a holiday meal in a location other than a hospital lobby. Rose’s favorite holiday is July 4. A big goal for 2024 is for her to be home and to be able to enjoy a fireworks display in person.
Hope Session by Amanda Joy Photography | Facebook | Instagram