Karina Knowlton, a vibrant 4-year-old from New Jersey, has faced more in her young life than many do in a lifetime. Diagnosed with acute myeloid leukemia associated with Down syndrome (AML-DS) at just 3 years old, Karina’s journey has been one marked by her strength, resilience, and the support of her family and the dedicated team at Nemours Children’s Hospital, Delaware.
Karina was diagnosed with Transient Myeloproliferative Disorder (TMD) within hours of her birth and admitted to the NICU at Nemours Children’s Hospital in Delaware. Her early days were spent under close observation, as patients with TMD can have an increased risk of developing leukemia. The first few months of her life revolved around routine bloodwork – every few days – and visits to specialists like Dr. Gresh and the Genetics team, all aimed at monitoring her condition.
The first sign that something might be wrong came during her routine bloodwork on June 8, 2023, during her 3-year-old Down syndrome clinic visit. Karina’s mom, Timatha, shares their experience during that moment: “I saw the results in the app and knew something didn’t look right. I called into the office and left a message. Dr. Kirsch called back and let us know that sometimes with kids, bloodwork just gets funky, so don’t worry too much, but let’s bring Karina in for another draw and a bone marrow biopsy just so we can get a better picture of what is going on.” While Karina looked healthy and was making significant progress, her bloodwork revealed a different story. Dr. Kirsch, a trusted member of her medical team, reassured Karina’s parents, urging them not to worry but recommending additional tests, including a bone marrow biopsy.
Timatha shares, “We got Karina scheduled for the additional testing on June 15, 2023, and spent the next day and a half waiting to hear back. On Saturday, June 17, Dr. Gresh called me and told Justin and me that, unfortunately, Karina’s results came back – it was indeed leukemia.” Karina’s parents received the news that no parent ever wants to hear just a day before her mother’s birthday and Father’s Day. The family was devastated, but their medical team, led by Dr. Gresh, encouraged them to celebrate Karina’s life with a planned party before her treatment began. “We asked if it was okay for her to be around people as we had a party scheduled the next day, and Dr. Gresh told us to have the party and give Karina one last hurrah with her people before treatment started. Karina got to go to the last day of preschool, had a few more tests done, and then started inpatient treatment on June 27, 2023.”
Karina’s treatment plan was a rigorous one—six rounds of inpatient chemotherapy, each lasting approximately 28 days, depending on how quickly her body could recover. Timatha recalls, “Each round, we were told to expect about 28 days of being in the hospital while treatment was administered, her counts bottomed out and recovered to an ANC (Absolute Neutrophil Count) of 200. Our stays varied in length between 24 and 38 days. Bloodwork was taken more or less daily while we were in inpatient, and Central Line dressing changes were done weekly (or if they needed to for some reason). A few different times, Karina had a complication called mucositis, which left her unable to eat. So, she occasionally had to have an NG tube inserted. In the fifth round, Karina developed colitis, so imaging had to be done as well, and TPN (Total Parenteral Nutrition) became the source of nutrition. After we got her final bone marrow results back, Karina had her line removed, which was the first big step in starting to get back to ‘normal.'”
Despite the challenging road ahead, Karina and her family faced it with determination and hope. But through it all, Karina remained strong. Her team of doctors, including Dr. Gresh, Dr. Caywood, Dr. Walter, Dr. Gonzales, Dr. Kirsch, and many others, provided exceptional care, ensuring that her parents were fully informed and involved in her treatment. Timatha recollects their family’s inpatient experience: “When you stay inpatient as long as we did, the staff truly becomes a second family. The one constant we had was exceptional care and making sure that Karina was as comfortable as possible, that I understood the medical stuff that was going on and was doing okay both physically and emotionally. Because Karina was generally in good spirits, we had lots of visits from nurses, aides, child life, and even occasional doctors pop in more to play with her for a few minutes than any ‘official’ reason.” The compassion and care they received made an incredibly difficult journey a little easier.
Karina’s parents played an active role in her care, learning to manage the various aspects essential to her treatment. “We were encouraged to participate in Karina’s care as much as we wanted to, so training on things like calculating ANC, line care, NG tube placement, how to safely change Karina’s diapers while actively on chemo, became a big part of our early learning. We were always encouraged to join in on rounds, and when she was up to it, Karina would usually high-five or hug almost all the doctors who were there.” The support they received from the medical team extended beyond just Karina’s physical health—it included emotional support and encouragement every step of the way. “I think my favorite thing about the staff, in general, is they tried to take something that no matter how you slice it is a difficult, exhausting, and frankly terrifying journey and make it as much as a positive experience as possible,” Timatha reflects.
After nine months of intensive treatment and countless hospital stays, Karina’s central line was removed—a significant milestone on her road to recovery. Adjusting to life after treatment has been a process for the entire family. For so long, their lives were dictated by hospital stays, blood counts, and the fear of what might come next. Timatha shares that now, they are focused on finding a new normal, “getting back into school and activities has been a beautiful and slightly terrifying process. There’s always a little bit of worry about things like exposure to germs, cancer coming back, and long-term effects of the medications Karina was on, but each day it is getting a little easier to just let Karina be a kid.”
Karina returned to school in April 2024, and her teachers were amazed at how seamlessly she adjusted as if she had never been away. Timatha shares, “Karina has bounced back like a champ. She gets excited to see her people when we go in for appointments and continues to keep us on our toes.” She continues to explore the world around her with enthusiasm and curiosity, keeping her family on their toes.
Moving forward, Timatha says they will take it day by day. “Plans for the future? It’s weird to think about because life was so day-to-day for a long time. Mostly, our immediate plans include playing, visiting people we haven’t seen as much as we would like to, going back to school in the fall, and more or less doing what we want to do without having to worry as much.”
To families facing a similar journey, Timatha offers this advice: “Be involved, trust your gut, ask questions, and make sure you take care of your own health. It is definitely not something I would wish on anyone, but Nemours truly makes you part of your child’s care team, and the doctors and nurses listened and took my concerns seriously when I told them something was off. Treatment is a dark time, but there (usually) is light at the end of the tunnel. And if your child’s tunnel is one that doesn’t have light, they will be there to help you through that as well.”
