Healthy Living

Seven-year-old Lymphoma Ninja Warrior Fights Through 500 Days of Chemo

Photo credit: Delaware Online

In some ways, Von Kleiv is an ordinary 7-year-old boy. He goes to Welch Elementary School in Dover, Delaware. He’s in second grade. He’s getting into karate, and just broke his first wooden board at his first demonstration. People know him as a boy warrior with a strong spirit. He is optimistic, laughs in the face of danger, and sees no challenge as too great to overcome.

That is an especially incredible mentality for a boy like Kleiv, who was diagnosed with a rare form of non-Hodgkin lymphoma in 2006 at the age of five. From the moment he was diagnosed, he told the nurses around his bedside that he was going to fight and beat the cancer. At the time, he was in kindergarten, and cancer was the last thing on anyone’s mind.

Von’s mother and father—Gina Kleiv and Lt. Col. Dain Kleiv—were faced with a situation more difficult than anything they could have imagined for their healthy, active child. Von’s cancer is called T-cell lymphoblastic lymphoma, and it is found in only approximately 2% of all non-Hodgkin lymphoma cases. The difficult-to-track and predict form of lymphoma requires immediate and aggressive treatment, and that is exactly what Von’s parents had to watch their son go through.

500 days of chemotherapy

The most common treatment option available to all cancer patients is chemotherapy, which is the use of medicines to treat cancer. There are many different medicines and drugs available, and they all target the cell cycle by which cancer cells grow and spread. Since cancer cells tend to grow faster and more erratically than healthy cells, chemotherapy tends to do a better job of destroying these cells. However, healthy cells get attacked in the process, leading to notoriously harsh side effects.

Von’s cancer treatment plan included 500 consecutive days of chemotherapy, with another 365 days scheduled following a break. In many general cancer cases, chemotherapy only lasts for 4 to 6 months following surgery. For lymphoma, treatments can last up to a year. Due to Von’s age and the nature of his cancer, the length of the treatment was drastically extended. Von’s cancer is unpredictable and erratic, compared to Hodgkin lymphoma, in which cancer tends to move in an orderly progression along the lymph system.
Those 500 days of treatment left Von barely strong enough to move, and Von’s parents watched him transition from running, to walking, to barely standing on his own. He suffered through badly damaged nerves, making it hard for him to feel his fingers and toes. Every day became a battle of nausea, muscle pain, and weakness. Like many cancer survivors who have gone through chemo, he went bald for a time. Still, he persevered, with the intention and will to beat the cancer for good.

Von’s father, Dain Kleiv, called the treatment plan “brutal,” but understood that it was necessary in order for his son to become cancer-free. The type of cancer that Von has a 95% cure rate, but Von will carry an increased risk of developing future cancers for the rest of his life. In addition to the higher risk, Von may suffer for the rest of his life from heart problems due to the excessive length of the chemotherapy treatment.

Voninja the Boy Warrior

One of Von’s favorite catch phrases is “I’m going to kick lymphoma’s butt!” He has managed to turn his attitude and fighting spirit into a schoolwide movement for cancer research. Welch Elementary School, which is housed on the Dover Air Force Base, has hosted a Laps for Lymphoma fundraiser for the last two years. All donations go to St. Baldrick’s Childhood Cancer Research Foundation, with the first year raising over $20,000 in support.

At the last Laps for Lymphoma event, Von demonstrated his karate prowess and walked two laps in front a banner that read: Voninja, Boy Warrior. The event was a moment of victory and reprieve for a boy and family who spent his kindergarten graduation at the oncology ward of A.I. DuPont Hospital for Children in Wilmington. For the moment, Von is back in school and giving his all to learning and being a kid, as best as he is able.

Von’s mother, Gina Kleiv, said that “it absolutely turned our world upside down because we weren’t expecting anything like cancer at all.” It must have come as shocking and devastating news, especially given that Von was active, very healthy, and carried perfect attendance in school.

Von’s parents remain aware that at any time, Von’s condition could take a turn for the worse. His body’s continual response to chemotherapy will dictate whether or not he is able to continue doing the things he loves, like hanging out with his friends and going to his karate lessons. The cancer had spread far enough when it was found to warrant immediate hospitalization, and he remained hospitalized for his entire 1st grade year.

Throughout it all, Von has faced treatment and surgeries with the heart of a warrior. Even his father—a lieutenant colonel in the air force—says that he has been amazed at the resilience and humility that his son has been able to radiate given all of the difficult procedures and surgeries. Both of Von’s parents have had to face their own share of difficulties, as they have had to watch their child go through incredibly difficult treatment and simply hope for the best.

Support and the future of cancer research

Von’s older sister, Lily, helps support her brother in his battle with cancer. She is in 6th grade, 11-years-old, and also an attendant of Welch Elementary School. As a family, the Kleivs show the importance of being supportive and strong as a unit. To extend that even further, the entire school community has been supportive and involved throughout Von’s battle with lymphoma.

During Laps for Lymphoma, Lily announced to the participants that Von receives one bead for every needle poke, surgery, chemo treatment, and blood transfusion. At that time, he had 1,174 beads connected on a chain that extends over 42 feet long. Only 500 of those beads are for chemotherapy. The rest are a reminder of the intensive treatment and monitoring that one must undergo throughout a battle with cancer.

The school’s principal, Jason Payne, has taken the lead on the schoolwide fundraiser. Von’s father gives Payne credit for organizing the effort to raise money for cancer research in children. In addition to coordinating the event and laying the groundwork for future events, Principal Payne has helped to raise awareness for lymphoma. September is both Childhood Cancer Awareness Month and Lymphoma Awareness Month, and he informed his students of this before conducting Laps for Lymphoma.

The Kleiv family chose to send the donations to St. Baldrick’s because the foundation only researches childhood cancers. They want the foundation to discover new ways to identify and treat childhood cancer so that no one has to live through what Von has. The treatment is difficult for fully grown adults. In children, the effects can be devastating for years, if not for a lifetime. Von is the face of childhood cancer and lymphoma for his community, and through increased awareness and support, perhaps a cure or alternative treatment will be discovered soon.