Madelyn Jepsen's Medical Story

Madelyn was diagnosed with Juvenile Recurrent Respiratory Papillomatosis, and had her very first of many surgeries at the age of 6. This is basically tumors that grow on her vocal cords. They are removed by a laser burning them off.  It is a rare disease, the cause is unknown other than it is a virus. When she had her first series of surgeries at the Children’s Hospital in Minneapolis we had hope that this was temporary and she would outgrow it. As the disease progressed pretty aggressively and 17 surgeries were completed, with not much improvement, we contacted the Mayo Clinic for a second opinion. She was first seen there in October of 2015, and after examination and little to no voice at the time it was decided that another surgery was the only option to rid the disease. A week later she went for the surgery and we found out that it was much worse than expected. It had spread from the vocal cords into the esophagus, and down into her lungs. At that point it was decided that chemo injections would be started as the only way to kill that disease and stop it from spreading.  Madelyn has since completed 8 chemo injections since December 2015. Things were looking good. There was very little disease left after the treatment series. On May 12th she went back to the Mayo Clinic for a routine surgery, and it was discovered that one of the tumors was cancerous. She had that tumor removed, and has started chemo injections again. The surgeon from the Mayo Clinic has also informed us that this is going to be a lifelong thing that Madelyn will need to go through with this disease.

 

Madelyn is now 12 years old and has had a total of 23 surgeries, and 10 chemo injections so far. And she will need to continue with many more treatments in hopes this will keep any disease from spreading.  And while she is covered under medical insurance, the injections are very expensive and insurance will only cover a portion.