On July 29, 2019, four short days after his 3rd birthday, Samuel was diagnosed with Acute Lymphocytic Leukemia (ALL). We knew he had not been feeling well but ultimately had no idea of how sick Samuel had been. About a month prior to diagnosis, Samuel began experiencing fatigue beyond normal. We attributed it to the hot summer days and busyness of our family of seven. In July, we took a trip to Disney World. He opted to sit in the stroller between activities, which again was different but not cause for great concern. When we returned, he had a minor fall in the driveway. From that point on, he had low grade fevers daily and continued to lose the ability to walk or stay awake. Samuel became very pale. We took him to the pediatrician; however, he did not see his normal doctor as this was not a routine visit. At that appointment, we were sent home with some strategies and a scheduled return visit with blood work later that week.
On July 29th, I was at work, preparing for a professional development. My husband had taken Samuel for his labs and was awaiting the follow up appointment. As I transitioned from leading one presentation to becoming an audience member in the next, my phone rang. It was Samuel’s doctor. I will never forget his voice or line of questioning as he asked me where I was and how long it would take me to get to his office followed by asking where Samuel was and how far he was from the office. He instructed me to come directly to the office and to have Craig meet me there. Once we were inside the pediatric office, we were escorted to a private room that having had four other children, I never knew existed. It was there that he examined Samuel for alertness. He informed us that Samuel’s hemoglobin was 3.3, his platelets were 3, and his white blood cell count, 4.5. He shared that he was not able to formally diagnose Samuel but that this looked like cancer. He then told us that he had already contacted Lurie Children’s Hospital in Chicago and that he had provided them with all our information. An ER room was reserved with his name, and they needed him to evaluate Sameul to see if he could tolerate the car ride with us or if Luries needed to send a team to begin treating him via ambulance. The pediatrician allowed him to travel with us as long as we went directly to the hospital.
After one night in the ER, Samuel was moved to the PICU due to the numerous blood and platelet transfusions his body required to stabilize. He then transitioned to the pediatric cancer unit (17th floor). Once on the 17th floor, Samuel was able to have his port implanted and to begin treatments specific to his ALL. The rest of us began the process of learning about what Samuel’s care requirements would be in the hospital, at clinic treatments, and at home.
Three and a half years of treatment inpatient, outpatient, and at home passed of course during COVID. We put our family of seven in a bubble and made Samuel our focus. Six months prior to the end of his active treatment, one of his brothers was diagnosed with stage 4 Hodgkins Lymphoma. Lucas has a story as well. Today, both boys are in follow up care. They go to Luries together every three months for blood work, x-rays, and full body checkups. The differences in how a little one copes compared to his older brother is night and day different. Samuel does not worry about his bumps and bruises and when he is sick, very casually tells us his cancer is back. Our hearts all sink every time he addresses his experience as a day-to-day thing…it is what he has known for half of his life. We are thankful every day to all who have helped us along Samuel’s journey.