Hear Ethan's story,
as featured on KS95 For Kids.
Finding His Voice Again
"Ethan loves to sing," said his father, Todd. "He makes a soundtrack wherever he goes." Consequently, it was not unusual that the first sign anything was wrong with this seven-year-old came from his voice.
"Last January, we noticed his voice quality was changing," said Ethan's mother, Dawnshelle. "His voice sounded muffled." Ethan had undergone a tonsillectomy in October, 2011, but nothing unusual had been noticed. Ethan said his throat felt fine.
On January 12, however, Ethan experienced difficulty breathing while in school. His teacher suggested Ethan get a drink of water. As Ethan leaned over the drinking fountain, he found he couldn't swallow. Called to the school, Dawnshelle couldn't believe what she saw. "The top of Ethan's mouth and all around his uvula looked bumpy, like cauliflower," she said. "The uvula itself was massive. No wonder Ethan couldn't swallow!" She rushed him to the pediatrician, who said, "I have no idea what this is." Dawnshelle was referred to University of Minnesota Amplatz Children's Hospital Emergency Department.
Thinking the mass might be excess tonsillular tissue, doctors scheduled surgery to remove it. "At this point, Ethan was feeling fine, so he really enjoyed being around some of the cool things at Amplatz," said Todd. "He enjoyed heated blankets. He loved the cool lighting and the 52-inch television. He made a duct tape wallet in the craft room. Everyone was very kind to him. He is a Lego fanatic and received many Lego kits from the staff."
On January 13, doctors removed a 2 cm mass on Ethan's uvula to biopsy. Ethan felt better right away, as he now could breathe and swallow better. "We thought everything was taken care of, and we moved on with life," said Dawnshelle. Then she got the call.
"On January 18, their doctor called to say Ethan had rhabdomyosarcoma," said Dawnshelle. "I had never heard of that before. I remember Dr. Rimell saying it was a very rare childhood cancer, but that Ethan had the most treatable form, embryonal, and the location was very favorable. He said Ethan's prognosis was good. Although terrified, I held on to those positive comments and tried to keep it together in front of our children." Ethan has a sister, Emma, 13, and a brother, Everett, 5.
That same week, Ethan had his first visit with his oncology team at the Journey Clinic. "There, we learned what life would look like for us in the next eight months," said Todd. "We felt good to learn that Amplatz Children's Hospital was a Center of Excellence for sarcomas. We felt we were in the right place." Ethan's care was led by Christopher Moertel, M.D.
A PET scan on Saturday and an MRI and spinal tap the following Monday brought more good news. The disease was localized and Stage 1, meaning Ethan's treatment protocol would be two cycles of chemotherapy over six months with no radiation. A port was implanted for easier infusion.
To get to the point of chemotherapy, however, Ethan had to have another surgery. "This was the lowest point in our journey, because we learned the surgery would result in a partial cleft palate," said Dawnshelle. "We worried about the effect it might have on Ethan's singing." They were happy to learn that Ethan later would be a candidate for reconstruction of his soft palate.
"Just in case the surgery was more extensive than planned, we recorded Ethan singing 'Jesus, You're Beautiful' to capture his voice," said Todd. "It's a song we have sung with our kids at bedtime for years."
Happily, the surgery went well. Two weeks later, Ethan was speaking with little indication of a problem, just a slightly breathy voice. Ethan then began his 15 weeks of chemotherapy.
Despite the surgeries and treatments, Ethan finished second grade, which astounded his physicians. As his chemotherapy progressed, however, he had more nausea and nerve damage. "His leg no longer moves when the physician taps his knee with a reflex hammer," said Dawnshelle, "and now, when drinking from a water fountain, he has to swallow in a special way or the water comes out of his nose," she laughed. "But he is resilient. He has found new ways to do things."
Ethan's care now consists of once-a-month visits to receive medication to prevent pneumonia. In addition, he will have a scan every three months for the next year. "I just want this to be over for Ethan," said Todd, who has battled high blood pressure and even landed in the Emergency Department once during Ethan's journey. "My phobia of hospitals is better than it was," he laughed, "but we still have a ban on TV medical dramas at our house."
"The reality of having cancer hit Ethan hard," said Dawnshelle. "He asks difficult questions now and worries about his medical future. The bad things in life have become real to him." Yet, he continues to provide his parents with inspiring soundtracks. When he heard about his upcoming Make-a-Wish trip to Walt Disney World, he said, "Well, Mom, I guess I'm going to live."
