This is a guest post by Torey Kauth. His daughter Julia is a Children’s patient and participated in our school re-entry program, which is funded by Great Clips. It provides child life specialists to help educate students and staff about how an illness impacts a child’s life. The program helps patients make a smoother transition back into a school environment after treatment for a major illness.
Daughter, big sister, first-grader, avid reader, cancer patient, artistic, inquisitive child. While everything on that list described Julia in November 2010, one of them obviously doesn’t belong in the description of any child.
Over the course of a few weeks during fall 2010, a stomach ache in our 6-year-old daughter escalated into a cancer diagnosis – a Wilms’ tumor. While it’s a very treatable cancer, it flipped our world upside down. Within a week of her diagnosis, she underwent radiation and chemotherapy. The radiation was completed by the month’s end, but the chemo continued into June 2011. Julia’s stage 3 diagnosis called for her to get chemo once a week and to have four week-long hospital stays where daily chemo was administered.
Julia handled the first few months of treatment very well. But things went downhill in January and bottomed out in February. After losing too much weight, we elected to have a gastric feeding tube (or G-tube) inserted to allow us to give Julia nightly feedings directly into her stomach. It turned out to be a good decision. Her strength returned, and she was able to take meds directly through the tube as well. Julia also opted to get her hair cut short around this time in order to have an easier transition to baldness. By April, her hair was almost completely gone, but she acquired several fun hats so she always had an exciting accessory.
About a month after Julia’s diagnosis, her Child Life Specialist, Jodi, visited her first-grade class. She explained what was going on with Julia and changes they might see. Cancer isn’t contagious. Julia’s hair might all fall out, and that means the medicine is helping her. Julia will miss some school when she’s not feeling well.
Julia’s classmates spent an hour learning about what she would experience during the months to come. They were to be her advocates among other kids at the school who wouldn’t know as much as they did. The child life specialist’s school visit helped make Julia feel more at ease around her peers because she knew they would have a good understanding of what was happening.
At the end of June 2011, Julia finished her last chemo treatment. In the months that followed, her chemo port and stomach tube were removed.
Now, she is a soon-to-be third-grader, guitarist, an inspiration, an environmental advocate, a healthy child, and a survivor.