Will’s Story: Surviving Sinonasal Teratocarcinosarcoma

Children's Cancer Research Fund Stories

Will is a tough and resilient boy that loves fishing, Nerf guns and being outdoors. His resilience was tested when he was diagnosed with a rare form of cancer known as sinonasal teratocarcinosarcoma two years ago.

What started out as a sore tooth and facial swelling one Sunday evening in February 2011, turned out to be much more serious, and the following day Will’s parents Mike and Janel took him to a pediatric dentist. After performing an x-ray the dentist immediately sent the family upstairs to an oral surgeon. After a mass was detected, the oral surgeon initially diagnosed it as being benign, however after completing surgery it was determined as malignant. This came as a complete shock for his parents.

“We were afraid that our beautiful son would not even get a chance to make his 7th birthday” his Janel says.

Will immediately started chemotherapy treatment and endured 13 cycles of chemo including a Maxillectomy at the University of Minnesota from March 2011 until October 2011. After a year of remission, Will’s cancer unfortunately returned in December 2012, whereupon he continued treatment until July 2013. During that time he had 22 separate hospital stays, with 82 nights in the hospital.

“Will is one tough dude. Even before his diagnosis he was always wise for his age. He handled cancer treatment with amazing resilience” Mike says. However, his cancer treatment has left its marks on both Will and his family.

“Will isn’t a normal kid any more. He is back in school for 3rd grade and I think he finds it hard to be ‘on task’ for so much time in a row” says Janel.

“He hasn’t gotten a chance to make really good friends in school. He has some children that he’s close too, but being gone so much makes him a little bit of an outsider. That along with missing hair and eyebrows and eyelashes makes him different and sometimes I think that scares the average 8 year old.”

Will missed half of kindergarten, half of first grade, and half of second grade. Because of trips related to Will’s treatment- sometimes requiring visits to out-of-state hospitals, Will’s two brothers Thomas and John have also missed a lot of school. Thomas celebrated his 3rd and 5th birthdays in the hospital with Will. John’s first birthday party was scheduled around treatment trips for Will. John’s 3rd birthday was celebrated in the hospital.

“The rest of us feel like we’ve missed out on a lot too” says Janel.

“We put off birthday parties for our other children so we wouldn’t bring germs home or go someplace that Will couldn’t go as well. We tried to support Will as much as we could and not taunt him with things he couldn’t do.”

Due to the radiation, the left side of his face will probably not grow, and he has moderate hearing loss due to the chemotherapy drugs. Will’s left tear duct was damaged in radiation treatment. His left eye is chronically dripping and causes blurry vision. So far it is not causing health issues, but there is the possibility it will in the future.

Despite his battle with cancer, Will has jumped right back into life. He’s now back at school full-time and he will get to go on all the field trips with his classmates.

“We are proud of the way Will and other kids face their treatment. They make the most of it. Most adults wouldn’t be able to do what they do” says Mike and Janel.