Benefit to help Steve Johnson planned Sept. 14
A benefit is being held for Steve Johnson of Wadena. Steve has lived in Minnesota his entire life. He was born in Detroit lakes and is 53. He is the second oldest of four boys. He and Kim have been married 17 years and have three children — Brittany, Brooke, and Jake.
Last May, when Steve went in for an appointment in preparation for surgery on his knees, his doctor found a mass in Steve's mouth. Steve was referred for a biopsy, which came back suspicious but inconclusive. After reviews of the biopsy by doctors at the Mayo clinic in Rochester and a consultation by the University of Minnesota in Minneapolis, and several different diagnoses, Steve was finally diagnosed of Myoepithelial Carcinoma with clear cell features and Hyalinizing Clear Cell Carcinoma (HCCC), two very rare cancers. In fact, less than 0.5 percent of salivary cancers are Myoepithelial Carcinoma in the world and only 1percent of salivary cancers are HCCC. Ultimately, Kim and Steve chose U of M because of the recommendation of Steve's doctor. He had previously worked with Dr. Bevan Yueh, the head oncologist at U of M and a specialist in head and neck cancers.
"Dr. Yueh has been wonderful. When he found out our kids were in the waiting room, he told us to get them. He told us that they are part of this, the whole family has cancer. He took time to get to know them, he's asked about them, he's so nice and personable," Kim said.
Steve immediately had surgery to remove the tumor. Doctors were unable to remove the entire tumor, though they thought they had gotten most of it. After a week in the hospital and three weeks of recovery, they planned on beginning radiation.
However, tests revealed a second lobe of the tumor and an infection from the first surgery. Steve was put on antibiotics and told he would need a second, more invasive surgery to try to remove the second lobe. Further testing showed that the second lobe was growing rapidly and was blocking about 50 percent of his airway. Kim worries every day that Steve will not wake up one morning because his airway has been cut off.
The second surgery took place Aug. 29. This was a tricky surgery because the surgeon had to remove the tumor by feel, not sight. Steve will have three weeks of recovery before he can begin radiation lasting for 8 weeks. Fortunately, Steve will have radiation in Minneapolis. He will have a feeding tube placed in his stomach, which will remain for 4 months. There are so many unknowns and what-ifs because of the rarity of both cancers, Kim said.
Dr. Yueh has not given Steve and Kim a prognosis, as he doesn't want that to become a mental deadline.
"He doesn't want us to set our mental clocks to that. We pray every day," Kim said.
"I think I'm going to be here next year, I have no doubt about it, but I have a feeling there's going to be issues, you know, something I have to deal with, "Steve said.
Steve has been unable to work since the beginning of May. Kim took a leave of absence from her job as a psychiatric nurse immediately prior to Steve's surgery. Kim and Steve have been able to stay at the Hope Lodge in Minneapolis, housing for cancer patients and their families. Lodging is free and they provide a free shuttle to and from the hospital, which has been a huge relief, Kim said. They have used up nearly all of their savings.
It has been emotionally draining for the entire family as well, though the Johnsons are trying to keep things as normal as possible for their children, Steve said. Their two daughters start college this fall. They tried to let Jake have a normal summer of fishing and getting ready for school.
"If someone had told us we were going to get our entire summer off, we would not have wanted a tumor to be part of that storyline" Kim said.
Friends and family have been planning a benefit for Steve. The benefit will be held Saturday, Sept. 14 at the Wadena Elks Lodge from 4 to 7:30 p.m. A ham dinner will be provided, and there will be a freewill offering and silent auction. Also, an account has been set up at Wadena State bank in the account of Steve P. Johnson benefit. Thrivent Financial for Lutherans will be matching a portion of donations received. Proceeds will be used to cover medical expenses as well as everyday living expenses.
Kim and Steve wish to thank all those who have donated to the benefit, organized the benefit, prayed for them, and offered help.
"People have taken time out of their busy schedules to help me. I didn't know that many people liked me," Steve joked.
The Johnsons have always been giving themselves. Every time there is a benefit, they donate what they can, Kim said. Steve donated stem cells to his brother when he had leukemia, saving his life. Now they are the ones in need.
Kim adds that they are just awed by people's kindness.
"The benefit has to be a huge undertaking and 'thank you' sounds so cheesy, but I don't know what else to say, she said."