SO, YOU'VE NEVER HEARD OF RHABDOMYOSARCOMA?
Neither had we.
Last school photo before her diagnosis.
All smiles during her first chemotherapy appointment.
The cute haircut before it started to fall out.
Happy Bald Head Day! We shaved it all off.
Some treatment days were harder than others.
Happy for the last of her long treatment appointments.
Daddy shaved his head, too!
Feeling lucky at a St. Baldrick's event.
Our family first heard the word rhabdomyosarcoma on Oct. 2, 2017, while sitting in a surgical waiting room at Children’s Healthcare of Atlanta. Austen, our four-year-old daughter, was in recovery from a procedure to remove what the doctor believed to be a urethral polyp. While we were nervous for her to go under anesthesia and have any kind of surgery, we were generally untroubled and definitely unprepared for what happened next.
“The pathologist and I are concerned,” said the surgeon after he asked us to sit. While he confidently went into the procedure with the plan of simply clipping off the suspected polyp, he was now more somber, explaining that the mass was actually coming from her vagina, that he removed what he could and that we would now need to wait on pathology to confirm whether it was benign or malignant.
We spent the next two excruciating weeks awaiting results and doing a ton of online research to prepare ourselves. When the pathology finally confirmed everyone’s fears, we felt like we already knew nearly everything there was to know about a disease we hadn’t even known existed exactly 14 days earlier: embryonal rhabdomyosarcoma.
It is important to note that in the world of rhabdomyosarcoma, Austen is pretty lucky. Not only does she have the less aggressive type, but she was able to have surgeries to achieve local control, one of the keys to successfully treating this disease. That allowed her to undergo the least intensive chemotherapy regimen and avoid radiation. She will require life-long monitoring and there is always a chance the cancer can return, but her overall prognosis is excellent. Too many others cannot say the same.
We created Austen’s Army Foundation not only to honor Austen’s experience with the disease, but for all the others who have fought, are fighting or will fight rhabdomyosarcoma. The disease is rare, but as we learned, awareness is even more rare. Therefore, we are committed to spreading awareness of rhabdomyosarcoma and raising funds to go specifically toward research on how to best treat rhabdomyosarcoma with the least amount of side effects.
Now you have at least heard about rhabdomyosarcoma and you know our story. We hope you never have your own story to add, but we do hope that you will recognize the importance of helping everyone who has been affected by this disease and join our efforts.
Jarrett, Elizabeth and Austen