A diagnosis of Leukemia will not stop Kate Rimel

As a 2023 Giant Food ambassador for its pediatric cancer campaign, Kate and her father met with their local Giant.

In September 2022, at the beginning of eighth grade, an active 14-year-old Kate Rimel became exhausted doing the smallest of activities. The busy student was having trouble keeping up with her usual schedule and was feeling pain in her legs and back. One night, when her temperature spiked to 105 degrees, Kate’s mom, Amy Rimel, took Kate to the local ER. Undeterred by the ER discharging Kate, Amy then called Kate’s pediatrician, Dr. Won, who agreed and ordered blood work.

The bloodwork had been read by Dr. Won by the time Amy brought in an exhausted Kate. The labs clearly indicated leukemia. Amy called Kate’s father, Robert, who was away for work, as they were told to pack a bag and head directly to Johns Hopkins Hospital.

By the time Robert landed in Baltimore and arrived at Hopkins, Kate was being moved from the ER to a patient room on the pediatric oncology floor where she would spend the next six nights. Kate was officially diagnosed with B-cell acute lymphoblastic leukemia (B-ALL). Robert credits Amy’s persistence and mother’s intuition for the early diagnosis and admission to Hopkins.

The next day, a team of doctors explained to the family that Kate would need to endure 10 months of intense “frontline” treatment, followed by an additional 18 months of less intense treatment, or long-term maintenance. The frontline treatment included chemotherapy infusions through a port surgically implanted in her chest, oral chemotherapy, intense steroids, and lumbar punctures to check for leukemia in her spinal fluid and to inject chemotherapy into her spine. To treat the various side effects of the chemotherapy, Kate would need to take several anti-nausea drugs. She also would receive dozens of blood and platelet transfusions along the way. The Rimels learned quickly that leukemia treatment would be a marathon.

The reality of the diagnosis finally hit Kate, who burst into tears, trying to process this overwhelming information. Kate’s parents and older brother Jack, were working through their own feelings about this devastating news in their own way. Robert acted as messenger, sharing updates on Kate and details on the treatment with those closest to the family. In contrast, Amy devoted herself to Kate, staying at her bedside every night.

The most difficult adjustment Kate had to make was the impact that this diagnosis would would have with school. Always a dedicated A student, Kate was not used to missing class or her assignments– all things she thought she would no longer be able to do.  Kate felt isolated and frustrated. Her parents knew the key to lifting her spirits was if Kate could still engage in school, so they called Anne Arundel County Public Schools about options. To their excitement, they learned that Kate could actively participate in school remotely via a telepresence robot controlled by her laptop. Kate could drive the robot from class to class so that she could “attend” classes. Baltimore local news covered this story. The robot enabled Kate to engage mentally, emotionally, and socially and most importantly, she could keep up academically – whether at home or the hospital, even while receiving chemotherapy infusions and blood transfusions. The robot changed everything, enabling Kate to find a routine and help keep her focused.

However, life for the Rimel family continued to be anything but normal. Amy and Robert committed to each other, and to Kate, that she would never spend a night alone. Kate’s grandmother was able to help Amy and Robert as they adjusted to their new routine. Robert would relieve Amy at Hopkins when he could, giving Amy a chance to spend time at home with Jack. Kate’s hair began to thin as the treatment started and it finally fell out completely in April 2023. The Rimels bought Kate a beautiful wig. In order to help her become comfortable with the idea of wearing a wig, amazing neighbors of the Rimel’s showed just how devoted they were by organizing a “wig party,” where everyone wore a silly wig. The neighborhood also ensured that the family felt loved and supported throughout their cancer journey – walking the dogs, bringing meals, and ensuring Jack was never alone after school.

As they reflected on the past year, Robert and Amy recalled some particularly harrowing moments. Kate’s treatment caused steroid-induced diabetes, so she learned to measure her blood sugar and give herself insulin shots. Thankfully, this was only temporary. Kate also experienced severe nausea. One anti-nausea medication caused dyskinesia (uncontrolled fidgeting or writhing,) returning Kate to the ER. In April 2023, Kate had a seizure at home. Robert was traveling for work again, leaving Amy and Jack to handle the scary situation. After calling 911 call and riding in the ambulance to the Hopkins ER, they learned that Kate had a blood clot in her brain, a rare side effect of one of the chemotherapy drugs. Robert was able to return immediately and join the family in the ER. Returning home after eight days, Kate learned to give herself blood thinner shots twice a day for 6 months and take an anti-seizure medication. This episode is still hard for the family, including Jack, to discuss.

Comforted by the many nurses and doctors who visited daily, the family felt the love and compassion of the Hopkins staff. Kate’s care team expanded from oncology to include an endocrinologist, neurologist, and a cardiologist. The family was faced with many medical decisions, including the all-too-common decision of treating the leukemia or treating the worst side effects. As Robert described it, “we are making decisions between bad or worse options.” Amy found that advice from parents in the Leukemia social media groups about these difficult choices helped tremendously.

Kate began the long-term maintenance phase in August 2023. This phase includes 3-month cycles of daily oral chemotherapy and periodic lumbar punctures and chemotherapy infusions. The goal of this phase is to give Kate as much chemo as her body can handle while allowing her to return to a somewhat normal life. With their eye on the end of treatment in January of 2025, Robert and Amy remain grateful for the early detection, the support shown by friends, family and neighbors, and by the amazing pediatric oncology team at Johns Hopkins. Following treatment, Kate will return for blood work every three months for five years, as there is some risk of a relapse in leukemia. If blood work is clear by that time, the team will declare her cured.

Celebrating her 15th birthday on August 4, 2023, Kate began her freshman year of high school in person. She hopes to return to summer camp and other activities that the family has put on hold since her diagnosis. Kate is grateful to her friends and supportive neighbors and of course to her devoted parents and brother.

Kate Rimel will share her journey with the CCF community at the 2024 Research Symposium on June 5, 2024.