Age: 3 Diagnosis: Standard Risk B-Cell Acute Lymphoblastic Leukemia Age at Diagnosis: 3 Favorite Things:…
Diagnosis: Aplastic Anemia
Age at Diagnosis: 14
Favorite Things: design, Chick-Fil-A, golden retriever puppies
Meet Karli, a brave sixteen-year-old with an eye for design, a passion for Chick-Fil-A, and a soft spot for golden retriever puppies. She can often be found sipping Starbucks and painting her nails while catching up on Gilmore Girls and Grey’s Anatomy. An unapologetically independent thinker, she holds a deep strength and maturity far beyond her years.
At fourteen, Karli was introduced to the world of pediatric cancer in December of 2021. Her parents began noticing their healthy, vibrant daughter suddenly growing more and more tired by the day. Soon, there was a paleness about her face and excessive bruising on her legs. One morning, she came down the stairs with big bags under her eyes, appearing unwell and complaining of a sore throat. They brought her to the pediatrician expecting to be sent home with a Z-Pak for strep throat. While there, they decided to request a blood test to ensure everything was as it should be. She just wasn’t looking herself.
Her pediatrician drew blood and then drew blood again when the numbers seemed off. The doctor pulled the parents aside into the hallway and explained her counts were incredibly low, symptomatic of leukemia. He sent them directly to their closest children’s hospital in Texas where more advanced blood tests would be performed.
As they waited to see a doctor, Karli’s dad, Jon, obsessively refreshed the hospital’s app searching for the test results. He panicked when every result began showing up in red but couldn’t get a clear explanation from the emergency staff. Finally, it was decided that Karli would be admitted for the night to receive a blood transfusion and undergo a bone marrow aspiration. The next morning, a hematologist oncologist sat them down with the results and said, “I have the great pleasure of giving you the best news of the day. I can definitely say it’s not leukemia.” Though they were incredibly relieved, it was troubling to have no explanation.
At that point, the team suspected a potential bacterial or viral infection in her bone marrow and started her on some medications to resolve it. After this treatment was found to be ineffective, Karli was diagnosed with Aplastic Anemia, a rare condition where the bone marrow stops producing enough new blood cells for the body to work normally. This serious condition leaves the individual prone to infections and uncontrolled bleeding. Karli followed the standard course of treatment, an immunosuppressive therapy that allows the bone marrow to recover. However, after six long months of treatment, it was determined the therapy didn’t do its job well enough. Karli needed a bone marrow transplant.
After waiting for three months, her family was informed of a 32-year-old in Sweden who was a 9/10 match for her. However, the circumstances surrounding the transplant were not ideal, and neither Karli nor her parents felt comfortable moving forward. They questioned several issues surrounding the transplant and chose to delay with the hope of gaining more clarity and potentially finding a better match.
Karli’s family weighed their options before pulling the trigger on the less-than-ideal transplant. On New Years Day 2023, Karli’s mom, Coreen, did some digging of her own. It was a Saturday and Karli was to be admitted for pre-transplant conditioning on the coming Tuesday. But she knew she needed to exhaust every option to feel settled about this somewhat-risky transplant. She found herself on an aplastic anemia Facebook page where the same Milwaukee-based doctor’s name kept surfacing. A doctor both recognized as a thought leader in the treatment of Karli’s disease and respected for his incredibly warm and personable approach. It was Children’s Wisconsin’s very own Doctor David Margolis, also known as Dr. Dave.
That night, Coreen sent him an email. Within minutes Dr. Dave, who was on vacation at the time, responded asking for more information. And, despite his vacation, he took the time to meet with Jon and Coreen on a video call to learn more about Karli’s case and to informally advise them. He too did not feel settled about this transplant option for her and recommended a haploidentical transplant over a 9/10 match. This type of transplant uses a family member, usually a parent, whose tissue type is half-matched. Dr. Dave, whom Karli’s parents found to be an empathetic listener, validated their concern, empowered them with questions to ask their team and gave them his personal number should they ever need him again. They offered to compensate him for his time, but he replied, “Don’t worry about that. We all want the same thing here which is the best outcome for your daughter.”
When they got off the call, Jon sobbed uncontrollably. Dr. Dave’s expertise, warmth, confidence, and true compassion were exactly what their daughter needed. He was the doctor for Karli. A doctor passionate and caring enough to take an hour out of his vacation to truly listen to them, respect them, and advise them, no strings attached.
That Tuesday, Jon and Coreen cancelled the transplant. Dr. Dave set up a meeting with her Texas-based team, and they welcomed him to take on an advisory role from afar. For the next six months, Karli continued to receive treatment in Texas while her parents were tested for their compatibility as donors. During this time, Karli had a few infections including an incredibly scary necrotizing staph infection that required a dangerous throat surgery. Though the surgery was a success, it left them all shaken. Each passing day felt filled with new risks.
As soon as Jon was determined to be the best match for Karli, and Karli was infection-free, the team moved quickly—hoping to dodge the danger of any more infections. They transitioned Karli’s care to Children’s Wisconsin so that Dr. Dave could manage the transplant. Upon arrival he told them, “I can’t promise you an outcome. All I can promise is 100% effort from me and my team. I will treat your daughter like my own.” And Karli’s parents are grateful that he lived up to every word of that promise.
Karli immediately liked him and found Dr. Dave’s approach to be incredibly respectful of her, especially as an adolescent. He always addressed Karli before her parents, asked for her input and included her as a member of the team. When Karli had doubts and fears right before the transplant, Dr. Dave delayed it. He needed her entirely on board as she would need both physical and mental strength to endure the long road after transplant. To help her make the best decision for her body, he reached out to the head of the bone marrow registry in Europe (someone he knew) to offer a second opinion for Karli. Dr. Dave read the doctor’s very blunt reply to Karli, “This summer will suck for you, but it’s so you’ll have ALL your summer’s back.” And that did it for her. On July 3, 2023, Karli received her dad’s life-saving bone marrow.
The transplant went smoothly and, aside from common side effects, she sailed through recovery. She was discharged after a month and has been staying in the Ronald McDonald House as she continues receiving care at Children’s Wisconsin. The family reports, gladly, that her transplant appears to be a success, and Karli should be home in Texas with her family by Thanksgiving.
This two-year journey was not only physically but emotionally exhausting for Karli, a teen removed from her friends, her school, and all sense of normalcy. A girl who has been separated from her family and whose body has gone through an absolute war. But Jon attributes his daughter’s successful recovery to her incredible grit and determination to overcome each hurdle along the way. And now that she is officially off fluids and can be out in the world again, she’s seeing the light at the end of the proverbial tunnel.
Once she is home, she will continue outpatient care at her local children’s hospital under the guidance of Dr. Dave. Jon is thrilled for his family to be reunited after five months of separation, and Karli can’t wait to be with her friends and finally get that golden retriever puppy promised to her. She’s holding her dad to that one.
Dr. Dave once told Karli, “I can’t wait ‘til I’m a distant memory for you.” Let’s hope this is soon a distant memory indeed. That Karli’s upcoming years are filled with late night hangouts with her girlfriends, long talks with her sister and all the good adventures a teen should experience.
Thank you for supporting research for teens like Karli. Thank you for giving hope.