Grace's Cancer Journey
As told by her mother, Caroline Hopper
Life for the Hopper Family changed on February 4, 2022. We came in from playing outside in the snow, and Grace said her throat hurt. Then later that night she developed a fever. My first thought was she had strep. We went to the doctor several times and they attributed the fever to a viral infection after ruling out things like the Flu, Covid and strep. After a week and a half of high fevers, continued sore throat and severe lethargy, we did bloodwork that showed that her white blood cell count was extremely high so we were advised to go straight to the ER at Arkansas Children’s in Little Rock. We were told it was either leukemia or lymphoma. Once we arrived in the ER, they did more labs that confirmed the very abnormal blood counts. Grace’s white blood cell count was 165 thousand (normal is 5-15 thousand) and her hemoglobin and platelet levels were very low. She also had an X-Ray that showed a mass in her chest. She was admitted to the hospital and by the next day, we had an official diagnosis: T-cell Acute Lymphoblastic Leukemia (ALL). They started treatment immediately and within hours of being told the diagnosis, Grace had received her first doses of chemotherapy.
After 28 days of treatment Grace underwent a bone marrow aspiration to see how the leukemia had responded so far. She was expected to be in remission at that time, but the tests showed that she still had an extremely high number of cancer cells in her bone marrow. We realized we were heading down a hard road. We pushed forth with standard treatment hoping she would have a delayed response because some children with T-ALL do, but Grace did not. Her leukemia persisted, so we had to start thinking outside the box for treatments that were a little less standardized.
Because her response to those initial chemotherapy treatments was so poor, we knew early on that she would need a bone marrow transplant. We first tested Grace’s younger sister, Charlotte, but she was not even a half match, which was of course very disappointing. But then we tested her dad, Aaron, and were thrilled to find out that he was a 10/10 match. It is very rare for a parent to be a 10/10 match, so this news was just amazing. At that time, the goal switched from curing Grace with chemotherapy to getting her leukemia into remission so that we could cure her with a bone marrow transplant.
Despite all of our efforts we were unable to get Grace’s leukemia into remission with treatments that were available at Arkansas Children’s, so in January of 2023 we enrolled in a clinical trial at Children’s Mercy in Kansas City, MO. Grace was eligible for the trial because her leukemia cells had a specific genetic change called an MLL rearrangement, which was identified when she was first diagnosed. There are several genetic mutations that are known to be associated with either a poor outcome or good outcome in children with leukemia, and in some cases this changes up front treatment recommendations, so identifying these mutations is important. MLL rearrangements are pretty uncommon in T cell ALL and are not known to affect prognosis, so it didn’t affect Grace’s initial treatment, but because these mutations are often associated with poor outcomes in other types of leukemia, research has been done to develop drugs that specifically target the MLL rearrangement. The clinical trial in Kansas City used one of these new drugs which had shown promising results in both children and adults with ALL.
We had to move our family to Kansas City for an entire month so Grace could receive this experimental medication. After that, we were able to come home but still had to go back and forth to KC for required study visits. After about 4 months of being on the trial, we were all so hopeful. She felt great and seemed to be responding so well. Her leukemia percentage was coming down steadily after each cycle, so we were sure it would get to zero. It felt like her transplant and cure were right around the corner. But, unfortunately that wasn’t the case. Grace’s leukemia was just so aggressive and soon, the new medicine stopped working. Her numbers started to go up and we decided we needed to take her off the study and switch gears yet again. We were not ready to give up hope and Grace was not ready to stop fighting, so we started another chemotherapy regimen as quickly as possible. Devastatingly, before the new treatment even had a chance to work, Grace’s leukemia began to progress very rapidly and she passed away on June 8, 2023, after a 16 month long heroic fight.
From the time she was diagnosed to the time she lost her battle, Grace endured more than 10 separate chemotherapy cycles which, together, included around 25 different drugs with over 100 individual treatment days. All of those treatments came with a laundry list of side effects and an exhausting list of medicines to manage those symptoms. She underwent countless needle sticks, spinal taps, and feeding tube placements as well as multiple bone marrow aspirations. She had several complications, one of which landed her in the ICU for weeks. But throughout all of this, Grace was absolutely amazing. We would go in for checkups and bloodwork, and most of the time, even when the results were horrible, she would be running around the exam room making jokes with her favorite nurses or pretending to be a dinosaur. You would have never known that she had as much cancer in her body as she did because she was just so amazing and resilient. This was obviously a blessing, but it also made it difficult for us to know how sick she was because she never showed it. I remember her doctor telling me once after bloodwork came back that most kids with similar results are usually so sick that they are hospitalized, but Grace was so feisty and full of energy. She loved life and was the epitome of strength. Because of this, she made so many friends and touched so many lives along her journey. We are so excited to be able to honor Grace’s memory and carry on her legacy through the Toy Closet.
