By Jody Kerzman | Photography: Photos by Jacy
The story that is the past three years of Kara Ohlsen’s life can best be told in numbers:
- 1,180 chemo treatments.
- 275 days of school missed.
- 55 trips to Fargo.
And the numbers that started it all: 2-25-2014. That’s the day Kara’s son Dash, then seven years old, was diagnosed with leukemia.
“Everyone always asks, ‘how did you know?’”
To answer that, Kara says, one must go back to the days leading up to February 25, 2014.
“Dash had been having fevers off and on since the end of January,” recalls Kara. “It was a pretty high fever, but it came and went and he didn’t have any other symptoms. On February 18, we took him to see our family doctor, Dr. Jeffrey Smith, who is also a close friend of ours. It had been about seven days of the off and on fevers and he thought it was probably just viral, being there were no other symptoms to suggest anything else. A typical virus lasts seven to 10 days so we decided to give it a little more time to see if the fevers would go away on their own.”
Meantime, on Saturday, February 22, Dash began complaining that his ankle hurt. Kara and her husband, Taner, chalked it up to Dash’s recent wrestling practice or growing pains. But the ankle pain worsened and by Sunday, the pain had moved to his hip and Dash’s fever returned. So the Ohlsens returned to their family doctor’s office on Monday. Dr. Smith decided it was time for further testing.
The next day, life returned to normal: Dash and his brother, Chaz, went to school, Taner headed to Minneapolis for a meeting, and Kara had a house full of kids at her in-home daycare. Kara was changing a diaper when she got the news.
“Our doctor said, ‘Dash has leukemia.’ All I remember saying is ‘no, no, no.’ And then I broke down.”
Dr. Smith instructed Kara to bring Dash to the hospital immediately where a pediatric oncologist was waiting for them.
“Usually they tell you to call and schedule an appointment. The fact that they were waiting for us was a sign of just how serious things were,” says Kara. “My mother-in-law had heard what was happening and had come to help. But I couldn’t move. I remember sitting on the floor. I couldn’t do anything but cry. I had this house full of kids and I couldn’t function. And then I got a call from the school that Dash’s ankle was hurting again. That’s when I clicked into action mode. I ran downstairs and grabbed my daycare files, which had all the kids’ emergency contact information in them. I handed the files to her and told her to start calling parents and tell them to come and pick up their kids. I pulled myself together and went to the school to get Dash.”
By the time Kara got to the school, only a few blocks away from their home, Dash’s ankle hurt so badly he couldn’t walk. With help from the school nurse, Kara got him to the car and took him home to wait for Taner; he had only made it 100 miles when he got the call from their doctor. Taner got home shortly after Kara and Dash and they immediately headed to the hospital, where the pediatric oncologist explained the leukemia diagnosis.
A Life-Changing Diagnosis
Within hours, the family was at the Sanford Children’s Hospital in Fargo, North Dakota, where they met Dash’s oncologist, Dr. Nathan Kobrinsky. They affectionately refer to him as Dr. K.
“I’ll never forget it. Dash was lying on the hospital bed and Taner and I were on the couch. Dr. K. started talking directly to Dash, explaining leukemia in a way a kid could understand. He told Dash, ‘I’ll never lie to you and if you have questions, just ask me.’”
Later that night, Dash underwent more lab work to determine what type of leukemia he had and the best course of treatment. Before anything could begin, he needed a blood transfusion because his hemoglobin was extremely low.
“It was a rough night. I don’t think I slept at all. I remember I laid in bed and cried and listened to all the new and unfamiliar hospital sounds and watched Dash closely during his first blood transfusion. I remember the sound of the IV machine humming. It was a new sound; now it’s almost a comfort sound but at that point it was such a new and strange sound. I remember all these little details so vividly. It was the beginning of a different type of life for us that day.”
The next day Dash had surgery to place a port in his chest. He would receive chemo treatment through that port for the next three and a half years. On that first day, he also had a lumbar puncture and his first chemo was injected into his spine. The lumbar puncture would determine if there were any leukemia cells in his spinal fluid; if there were, it meant the leukemia had spread to his brain. Much to everyone’s relief, Dash’s spinal fluid was clear. Dash was diagnosed with B-cell acute lymphoblastic leukemia.
“We were lucky he had the type of leukemia he did because while the treatment is longer, the prognosis is better than other types of leukemia.”
Coping with Leukemia
Kara started a journal during those first days. She would eventually fill three books with notes, dates, and lab reports throughout Dash’s cancer journey. She also started a Facebook page, which became a sort of public journal.
“When the news of Dash’s diagnosis got out we were flooded with texts and phone calls. We couldn’t keep up with them, so we created the Team Dash Facebook page. Initially it was just to let friends and family know what was going on, but it did turn into more of a coping mechanism for me. It helped me to know that there were people out there that cared and to have a place to say ‘please say a prayer for Dash.’ Knowing people were praying for him helped me mentally. And I do truly believe those prayers helped him. I never expected the Facebook page would grow to the size it did. More than 4,000 people follow the page now.”
While Dash became a Facebook celebrity, his older brother, Chaz, remained his biggest fan.
“They’re best friends,” says Kara. “On our first trip to Fargo we were so focused on Dash and trying to help him until Dr. K. asked when Chaz was coming. He insisted he get there as soon as possible. My mom brought him to Fargo and when he arrived, Dr. K. sat him down and talked to him about what was happening to Dash and what his role would be. He told Chaz to be patient and to know that Dash would need some extra time and attention from his parents. He told him to look out for his brother and to stick up for him if kids made fun of him when his hair fell out.”
Dash did eventually lose his hair, but no one teased him about it. In fact, many friends and classmates at Solheim elementary shaved their heads too.
“Those kids, and the teachers and staff at the school, were so supportive of Dash and Chaz and of our whole family. Seeing how they wanted to help, sending cards, or Skyping with Dash when he was gone was so incredible.”
Dash missed 275 days of school during his treatment—sometimes for treatment, other days were because his blood counts were low, or there were too many germs and ill students at the school. But he stayed on top of his school work, thanks to some accommodating teachers and his mom, who took on the role of teacher when Dash couldn’t go to school.
“I gave myself the title of ‘Momcologist’—a mom, a doctor, an oncology nurse, and a teacher.”
Dash took his last dose of chemo, in pill form, on May 21, 2017 at a party at Sky Zone. His family, friends, and teachers were all there to cheer him on. Dr. Smith was also there to be part of the special day.
“It was an extremely emotional day,” recalls Kara, with tears in her eyes. “It felt like ages. When you start treatment, you look at the whole process and know we have about three-and-a-half-years of chemo and think at that point—will we ever get there? To actually have him take that last dose of chemo surrounded by friends at such a fun place was so amazing and memorable for our entire family.”
Sharing to Help Others
Looking back, Kara says cancer touched her family’s life in many ways, and while cancer is a negative thing, Dash’s battle brought many positives to their lives.
“The connections we’ve made with people and the relationships we’ve built with other cancer families has been amazing. We’ve lost friends through this process, but we’ve gained a lot more than we’ve lost. Taner got really involved in Brave the Shave by taking on the role of family representative and we have bonded with a group of families through that. They’re a group of ‘cancer parents’ that just get it. That’s been incredible—having someone to talk to that understands the medical terms, the fear, and all the emotions. It’s been great to see how Brave the Shave has been developing and growing over the years. Money raised through that event goes to childhood cancer research and to a family fund that is helping North Dakota families affected by childhood cancer. It’s a great organization and I hope it continues to grow.”
Kara hopes people’s understanding of childhood cancer continues to grow as well. She will do her part by sharing her story.
“It’s almost as if people are scared to talk about childhood cancer. But I enjoy sharing our story and I think it’s important for people to know that this stuff happens. I was blind to the fact that kids could get cancer. It never even crossed my mind. When Dash was diagnosed it opened my eyes to this whole world of kids that are dealing with this adult disease. It’s not fair because they didn’t do anything. They’re so innocent. I still ask myself why did this happen? But, then I tell myself to stop wondering that because there isn’t an answer to my question. It just doesn’t makes sense to me how a child can get cancer.”
A New Normal
While Dash finished his cancer treatment in May, his immune system is not fully recovered. That could take six months to a year. He will have monthly labs for the first six months after treatment. Eventually he will just have lab work done once a year, for the rest of his life.
“There is always a chance Dash’s cancer could come back or he could develop a secondary cancer. That’s one of the risks of chemo. The biggest chance of a relapse is in the first year,” says Kara. “I try not to think about that and stay positive. Every month when he has his labs, things stop for us until we get those results.”
Dash feels better and life is slowly returning to normal, but Kara isn’t sure what “normal” is anymore.
“The hardest thing right now is deciding when I should go back to work and what I want to do. My daycare closed literally the minute Dash was diagnosed. I couldn’t reopen because we couldn’t have kids and germs in the house because of Dash’s suppressed immune system and I needed to be available to take him to treatments and to stay home with him when he couldn’t go to school. The thought of having a job again—of being tied to a job and not available to Dash—scares me,” Kara admits. “When he was diagnosed everyone said, ‘this is your new normal’. I hated that term, but it’s true because at that point our life changed and everything revolved around cancer. Now we’re onto another new-normal and I haven’t figured it out yet.”
One thing she knows for sure, is the importance of family. Whatever she decides to do in the future, she’ll make sure to put her husband and sons first. Because if she’s learned anything in the past three and a half years, it’s to treasure every moment together.
September is Childhood Cancer Awareness Month. Kara suggests the following websites if you’d like to learn more about childhood cancer or leukemia: