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Keep on moving

By Claudia Hankin Balluff

“Eat and keep moving!” – Kyle Levanen’s advice for other children with cancer.

During his years of battling cancer, 17-year-old Kyle Levanen from Duluth, Minn. has gained wisdom that even the healthiest of us could take to heart.

• Appreciate the small things.
• Keep your sense of humor.
• Have sympathy for those who suffer.
• Most of all: Never stop striving.

A few years ago, while on a family vacation in the Twin Cities, Kyle became very ill with swollen glands and a severe lack of energy. His parents, Grant and Sherri, brought him in to Minneapolis Children’s Hospital, where he was diagnosed with T-cell acute lymphoblastic leukemia (ALL). Kyle’s initial reaction to his diagnosis may surprise some people: “I was happy to finally find out what was wrong with me,” he says.

This attitude of attacking a challenge, of moving forward rather than shrinking away, is typical of Kyle and has helped him push through long periods of pain and isolation.

Kyle was given chemotherapy immediately after his diagnosis, as his vital organs were already struggling to function. Unfortunately, the chemo failed to put him into remission, signaling that his leukemia was not likely to be cured with regular chemotherapy. Thus, his doctors scheduled him for a double umbilical cord transplant (where stem cells are obtained from two separate babies’ umbilical cords) at the University of Minnesota Amplatz Children’s Hospital.During the pre-transplant evaluation it was discovered that Kyle’s disease was already relapsing. He was admitted that night into the hospital, under the care of Dr. Burke, for intensive chemotherapy and radiation treatment. This was the first of many difficult times for Kyle. “I was very sick…and very lonely,” he says. The transplant had to be postponed until he was back in remission. However, this was not guaranteed.

Finally, on Halloween of 2008, Kyle received his double umbilical blood cord transplant under the care of Dr. Verneris. He had to stay in his “small room” for six weeks with few visitors other than his mother and father, who took turns staying with him, and his teacher, who came in to give him lessons, and grandparents, aunts and uncles. He was a junior in high school at the time, taking a full and difficult course load. When his teacher, fearing he wouldn’t be able to keep up, suggested that Kyle drop half his classes, he refused. He didn’t want to fall behind and, besides, he looked forward to school every day, as it kept his mind off of his sickness.
In addition, he insisted on keeping active. He loved playing the Nintendo Wii and even asked for a small exercise bike to be put in his room, to keep his legs going.

In December, when Kyle was finally allowed outside of his hospital room with a mask on, he was elated. “I lived in the hallway,” he says. “I did my homework and read out there. I loved the commotion around me!”

A week before Christmas, Kyle was moved to the Ronald McDonald house and got to spend the holidays surrounded by parents, aunts, uncles, cousins and grandparents. This is a very special memory for Kyle. On New Year’s Eve, his friends from Duluth came to Minneapolis to celebrate with him.

Finally, after six months in Minneapolis, Kyle was able to go home.

“Wow, I missed my own bed. There are no words to describe what home felt like,” he says.

He could go outside, but he had to wear a mask. “People stared,” Kyle says. “I had to learn to be strong.”

Unfortunately, his trials weren’t over. In mid-March of 2009, he contracted the Varicella zoster virus. This virus, which causes chicken pox normally, would not be dangerous for a person his age, but in Kyle’s case it was disastrous. He developed both external and internal chicken pox. When the chicken pox ultimately formed inside his lungs, he had to be rushed by ambulance back to the University of Minnesota Amplatz Children’s Hospital. Kyle couldn’t breathe…a feeling of terrible panic he will never forget. After a week in a chemically induced coma, he started to slowly recover. He was beginning to be able to sit up, breathe and eat on his own, when things got even worse.

Unfortunately during his recovery, Kyle contracted another common infection called respiratory syncytial virus (RSV) and had to be put back on a ventilator for another week. Eventually his system crashed. He was given steroids, and his doctors cut his immune suppression drugs in half, even though they knew this could lead to further complications. Finally, with no other options, they induced a coma again, this time for 3 weeks. Kyle’s family was called; it seemed likely he wouldn’t survive. They flew in and gathered around his bed to wait and hope.

But Kyle never gave up, and very gradually he began to improve, although he was extremely weak. “I couldn’t even lift a finger off the bed. I needed help for everything, but I tried to keep my sense of humor,” he says. Bit by bit, Kyle got stronger. It was hard and frustrating, but he learned to appreciate the small pleasures in life. “I remember my first shower after three months. My therapist helped me walk in there, and I didn’t want to come out!”

Kyle has been home since mid-June of 2009 and has been in remission ever since October of 2008. He’s happy to be back in Duluth with his parents, his friends and his dog, Bullet. This past fall he got to go hunting, hang out with his friends, put some hours in at his father’s welding company, and eat whatever he wanted without getting sick.

Kyle’s a senior in high school now. Even though he wasn’t able to go to school for two years, he kept up with his studies and is graduating this spring with his class— with honors.

Kyle sums up what he’s learned best in an essay he wrote about his experience for college applications: “I have had to speak up for myself and persevere many tough, tough days. I have had lots of pain, so I have sympathy for those who suffer. I have become very independent and a self-learner when it comes to my schoolwork. In the future, I hope I can help others, as those who have helped me. I feel I am an example to never give up hope.”

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