On February 26th , 2016 our youngest daughter was diagnosed with an aggressive form of bone cancer. While the diagnosis answered the question about the pain she was experiencing, it plunged us into a whole new way of life.
Our daughter is receiving care from oncologists at Nemours Children’s Specialty Care Clinic in Jacksonville, Florida. She visits Nemours for blood work and doctor check-ups weekly. Often we take her to Nemours three or four times a week as she has needed blood transfusions, x-rays, treatment for pain, prescription injections and visits with a psychologist throughout her treatment. She has received both chemotherapy and radiation treatments. The chemotherapy requires a great deal of hydration so she receives it at Wolfson Children’s Hospital as an inpatient. We currently have 2 more hospitalized chemotherapy treatments to go. She also goes to the day hospital at Wolfson for scans and tests. Her radiation treatment was received at the UF Proton Therapy Institute and initially required 31 days straight of treatment. She probably will receive a second round of radiation.
We look back and wonder how we got through chemotherapy and radiation at the same time as the scheduling, travelling and organization was intense, let alone the side effects our daughter endured. She is fierce and is fighting like a true warrior princess. But, we can’t do this alone.
We are blessed to have received much needed support from CAPS. From assistance in paying for prescription medications and meals during treatment to assisting with travel expenses, grocery expenses and little treats to keep our daughter’s spirits high, CAPS has been there for us. CAPS has allowed us to afford incidentals such as a heating pad, a portable dvd player and a blender which provide comfort and quality of life for our daughter. It is an incredible relief not to be stressed about how we are going to pay for things and it allows us to focus all our energy on keeping our daughter as healthy and positive as we can during her fight.
– Susan and Gary