Miller is strong, stubborn, and silly all at once. His smile lights up a room, and his laughter is contagious. His favorite toy is his little giraffe, Squacky. She goes with him everywhere and has been with him since the day he was born. He loves Minions, Trolls, and Hotel Transylvania. He loves Nerf guns, blowing bubbles, and swimming. Most of all, he loves his two-year-old golden retriever, Luna.
Miller was diagnosed with leukemia in January 2021, less than 3 weeks after his eleventh birthday. Before diagnosis, Miller complained of stomach pain. We spent 8 hours in the ER having tests run. They checked blood and urine, did an ultrasound, physical exam, and finally a CT scan. They found nothing wrong and sent us home. We followed up with our pediatrician and an orthopedic specialist when he complained of shoulder and back pain. Our last stop was the hematology/oncology clinic, where they ran bloodwork for the third time in one week. We were told they believed he had leukemia and to go home and pack a bag immediately. He was checked in to Children’s Medical Center that same night, and preparations were made to begin chemo the very next day.
Miller had a bone marrow aspiration to confirm his diagnosis and surgery to place a port within 24 hours of being admitted. He has had many spinal taps in which chemo is injected into his cerebrospinal fluid. He has received chemo, steroids, antibiotics, and several transfusions. One of us has always been by his side. The company I used to work for closed its doors in February 2021, so we were able to divide and conquer, taking care of Miller and his younger brother, Austin. We spent a lot of the year apart, and FaceTime became a regular part of our routine. Without any family to help us, we have had to rely on friends, and we are grateful for the ones who have stood by us.
Miller has Down syndrome, so his treatment has been very carefully monitored since his very first admission. Kids with Down syndrome process chemo differently and are more likely to develop infections. He spent 231 days in the hospital in 2021 and finally finished front-line treatment in January 2022. He finished fourth grade virtually and spent most of the fifth grade in the homebound program. He returned to school in March 2022 and was able to attend his fifth-grade completion celebration with his peers.
I went back to work nine months into treatment. It was hard because Miller was still in the hospital, and I needed to be home when Austin was not in school. Austin has struggled to deal with his brother’s diagnosis and often felt neglected as Miller needed so much attention. I felt extremely guilty and overwhelmed by the diagnosis, and there were days I could barely function. Miller’s dad had to stop working almost completely for 2021. Now we are in maintenance, and everyone is home together. We cherish every moment and hope for a bright future when treatment is complete in 2023.
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