By Jen Bakken
DELANO, MN There aren’t many who can say they have survived cancer four times, but Scott Johnson of Delano can.
At just 23 months old, he was diagnosed with bilateral retinal blastoma (cancer of the eye). Though this cancer is hereditary, it’s uncertain who in his family tree ever shared the diagnoses.
After radiation treatments, he lost his left eye. Tumors remain in the right eye, and growing up, Scott remembers having to be careful not to injure it.
“I had to be careful not to get hit in the head because it could easily detach my retina,” Scott Johnson said. “So, that meant no sports or anything. Sometimes it was tough being the boy who sat out, but I always found other things to do.”
When he was 11 years old, his family moved from Chicago to Edina, and things were going well.
Upon graduating from high school in 1986, he went off to college. He changed colleges a few times while trying to decide on a career path.
One night while out with friends, he felt a tap on his shoulder. He thought it would be one of his buddies goofing around, but instead he turned to find Jeanine Theis of Delano.
“She asked me to dance, which is something she had never done before,” he remembered. “We did, and that was it. We talked the entire night we just clicked.”
They began dating, and about a year later, started planning a wedding.
In 1992, Scott had just begun taking classes at St. Thomas University when he noticed a bump on his cheek.
This bump turned out to be a cancerous baseball-sized tumor called a fibroblastic osteosarcoma.
The tumor had dissolved his cheekbone and, if left untreated another two months, could have reached his brain.
After its removal, Scott began wearing a special denture that helps him appear as if he has a cheekbone.
This second cancer diagnosis happened just six months before their wedding, but their plans and their hopes for the future continued.
Then, six weeks before the wedding, Scott noticed another bump on his forehead. It was a squamous carcinoma.
Again, big words were used in his diagnosis, and again, it was cancer.
Immediate surgery was performed, the tumor was removed, and a bone graft from the back of his skull was placed in his forehead.
Scott spent a week in the hospital, but the wedding went on as planned in April 1993.
Upon returning from their honeymoon, Scott began six months of intense chemotherapy.
“I wouldn’t wish chemo on my worst enemy,” he said shaking his head. “But my chemo, it brought me closer to God.”
After his last dose of chemo, just when the newlyweds thought things would start to improve, he awoke one morning with a big bulge next to his right eye, his good eye.
Fortunately, this wasn’t cancer, but unfortunately, it was a bad infection, which had caused the bone graft in his forehead to die.
“For about six months, I didn’t have a forehead and had to wear a helmet,” he said, adding with a laugh, “I used to have people sign it like it was a cast and tell them that I broke my head.”
When the infection cleared up, his forehead was rebuilt using titanium mesh and acrylic, making it 10 times stronger than the human forehead.
“The doctor joked that I could be hit in the forehead with a hammer,” he said, “and the hammer would break before my forehead would.”
Life for Scott and Jeanine continued they never lost hope throughout, and in 1998, they welcomed a baby boy, Parker, into the world.
At just 4 months old, Parker was diagnosed with the same eye cancer his father had battled.
Though they have to watch Parker closely, he has been cancer-free since 1 year old. He is now a happy fourth grade student at Delano Elementary School.
In 2003, the Johnsons were excited to move to Delano and be close to Jeanine’s parents, Pat and Pete Theis, who for many years, owned the Amoco station where Absolute Automotive is today.
Shortly after their move, a baby girl entered their lives, born six weeks early. They fittingly named their daughter Faith.
The very next day, Faith was given the same diagnoses that her brother and daddy shared eye cancer.
At 4 days old, weighing just over 5 pounds, Faith had laser eye surgery and began chemotherapy.
“They didn’t know how to dose the chemo,” he remembered. “They had never done it on a baby that small, and consulted specialists across the country. But even after 11 months of chemo, other things popped up.”
The Johnsons learned of specialists in Philadelphia and packed up the family.
There, a radiation plaque was sewn to the back of Faith’s left eye, which ended up scarring the eye, and leaving her without much vision.
The next year, the same treatment was done on her right eye, and luckily, she does have more vision remaining in this eye.
Though they have to continually watch for other signs of cancer, Faith is now doing well. She is attending Wee Tiger Preschool.
Throughout it all, the Johnsons have had hope, and their faith has grown. They became very involved members of Delano United Methodist Church, where Scott is currently a Sunday school teacher, has been a youth leader, and serves as the chairman of the ad council.
“Scott is a great thinker and visioning person,” commented Pastor Matt Sipe of Delano United Methodist Church. “He is good at thinking about direction developing vision/mission setting. Because he loves Jesus and is a part of this church, he really helps guide this church in its mission and ministry as the ad council chair.
“They are an absolutely awesome family,” said Jan Johnson, a friend and fellow church member. “Scott has been a youth leader and he is one of the kids. He brought a youth group over to my house to rake leaves last fall. They did a wonderful job and had fun doing it. He participates with them and empowers them. Sunday is family day for them, so don’t ask them to do anything. Nothing interferes. I know if I needed them for something, anything, they’d be there in a moment.”
Jeanine is a devoted stay-at-home mother, while Scott works in the field of information technology and also spends time as a Cub Scouts den leader.
In June 2008, what they hoped was just a small cyst on Scott’s back, was actually another tumor this time, called lyomiosarcoma. Again, cancer, for the fourth time.
They removed it, but chemo isn’t known to work for this type of cancer, and they are hoping to avoid radiation because of Scott’s history.
Because he has survived cancer with hope and faith, Scott is an inspiration to many.
Previously, he has been involved with the American Cancer Society, and one summer, he spoke at 13 Relay for Life events.
“I tell people to have hope,” he said. “And, it’s not just the patient who struggles, sometimes I think the caregiver struggles more. But have hope, patience, and call out to God.”
Many around him feel Scott’s true calling is in public speaking, and it is something he truly enjoys, almost as much as working with youth.
“The fact that I’ve had cancer four times and I’m still living,” he said, “means I’m supposed to be here for something. Right now, I’m just living life and enjoying my family.”