Leukemia Diagnosis: Macie’s Journey of Courage
The smell of smores, the crackle of the campfire, the laughter of kids riding bikes and playing tag long into the evening—it was shaping up to be a Memorial Day weekend to remember in 2020. Like everyone else, we had spent months in quarantine, craving connection and normalcy. I was determined to give Macie a weekend full of joy, despite the world being far from normal.
Macie had been home with me while I tried to juggle a full-time job with being a full-time mom. But in mid-May, I noticed subtle changes in her—she was unusually tired, irritable, and withdrawn. I tried to rationalize it as a growth spurt, a reaction to disrupted routines, or just “pandemic blues.” Deep down, I didn’t want to admit the truth: I feared something far worse. Her father had relapsed early in the pandemic after six months of sobriety, and we were living apart, navigating a fragile new reality. I wanted to shield myself—and her—from more pain.
I had hoped that slowing down, changing the pace, and embracing the small joys of home life would lift her spirits. But instead of laughter and endless energy, Macie clung to me, wanting to be held, seeming exhausted by even the smallest activities. It was in those moments I realized my fears weren’t unfounded—something was truly wrong.
Then, on May 27th, 2020, at 1:55 p.m., the pediatrician called. The words hit me like a punch: abnormal white blood cell counts. Leukemia. I don’t remember the details the doctor explained; my mind simply shut down. I kept repeating to myself, “Something is wrong. Breathe. Listen. Bonnie, something is wrong—listen.” The pediatrician asked if she could be driven safely or needed to be airlifted. Within an hour, we were on the road, driving 168 miles to the nearest children’s hospital. Covid-19 protocols allowed only one parent inside, so I held Macie’s hand, wheeling our suitcase down long, sterile hallways, my heart heavy with fear and exhaustion.
When we reached our hospital room, the truth of the situation hit me hard. During the drive, I had lied to Macie, telling her we weren’t going to the doctor for her but for me. She had smiled, trusting me completely. But the moment nurses began discussing procedures, she looked at them and said firmly, “No, we are here for my mom.” My heart ached. I tried to soften the blow with another lie: “Baby, can you let the nurses help you show me what to do?” I will forever regret these lies—they were meant to protect her, but they complicated the first few hours of treatment.
The initial bloodwork confirmed she needed immediate transfusions, which required placing IVs. Macie, already fearful from earlier blood draws, screamed and cried as she realized what was happening. Holding her in my lap, tears streaming down both our faces, I finally told her the truth: “Honey, there is something wrong with your blood. The doctors need to put a needle in your arm to help you get better.” She screamed back, “No, Mom! I feel better! You’re the one who’s sick!” It took two nurses, a doctor, and me to hold her still long enough for the IV. Afterward, we curled up together, tears slowly subsiding, and she whispered, “No mama, you don’t cry, just me.” I promised myself I would be stronger for her.
On May 28th, Macie was formally diagnosed with B-cell Acute Lymphoblastic Leukemia. The very next day, she underwent a central venous catheter (port) placement, a bone marrow biopsy, and her first chemotherapy infusion. For the first time since arriving, Josh and I were allowed together, taking a short walk and discussing the future. I told him, “I don’t want to do this alone, but I won’t do it with you if you’re drinking.” His response? “I know. I’m done.” He has been sober ever since.
We spent a week and a half in the hospital, a tight-knit trio navigating a terrifying new world. Leaving on June 6th was bittersweet: we were finally together as a family, but heading home without doctors or nurses felt like taking a newborn home for the first time. The next six months were a grueling emotional rollercoaster. Steroids caused insomnia, muscle aches, hunger, and anger. Every five days, we endured three-hour drives for treatment, often with Macie screaming in discomfort. I am grateful the stay-at-home order kept traffic minimal, making these trips slightly more bearable.
Our family became an irreplaceable lifeline, providing meals, cleaning, and emotional support. Two days before Macie’s fifth birthday, she was hospitalized again with a fever and low ANC, eventually airlifted to the children’s hospital. Despite being in the hospital, her birthday was magical—doctors, nurses, and even our roommate decorated her room and sang to her. Coming home to a house transformed by her aunt, cousins, and grandma, Macie’s joy was indescribable.
Acute Lymphoblastic Leukemia treatment is a long journey: Induction, Consolidation, Interim Maintenance I, Delayed Intensification, Interim Maintenance II, and Maintenance. By December, we had reached the Delayed Intensification phase, involving daily oral chemo and IV Cytarabine. Thanks to the Kiwanis House, we were able to stay nearby with a travel trailer, a gift from my parents. Simple walks to the hospital, admiring the fall leaves, Christmas decorations, and imagining Santa at work, became small sources of normalcy and happiness.
A fever during this phase led to another hospitalization from December 9th to 14th. Covid restrictions meant no outside food, so when Macie screamed for macaroni and cheese, a kind doctor delivered it along with mandarin oranges. Small acts like this became lifelines, and finding the Elf on the Shelf each day brought her joy amid the chaos. That Christmas, watching her frail body illuminated by twinkling lights, eyes wide with wonder, was a moment of pure magic. Despite illness, childhood amazement could not be stolen.
Reaching the Maintenance phase felt like completing a marathon. Though this phase lasts two years, it is less intensive: monthly hospital visits, daily oral chemo, and quarterly infusions. Yet it is still demanding, and we’ve learned to cherish each small victory.
To celebrate, we planned a family vacation to Maui. On the day of departure, Macie’s blood counts prevented flying. Within an hour, we rebooked a road trip to Disneyland. Despite her being neutropenic, we took precautions, and it was the best decision we could have made. Her joy, laughter, and excitement—especially on Thunder Mountain—were priceless. I have no doubt that happiness gave her body strength.
Cancer does not just attack the patient; it attacks the entire family. Accepting this new reality took therapy, time, and effort. Even now, the fear of relapse lingers, but channeling pain into advocacy has been healing. My goal is to make Childhood Cancer Awareness as prominent as Breast Cancer Awareness and to start a nonprofit supporting families during hospital stays. Small fundraisers in the meantime help provide essential items to families.
Macie’s journey has been unimaginably difficult, but through every setback, every tear, and every moment of fear, love and resilience have carried us forward. Cancer may have changed our lives forever, but it will not define us. We decide how we move forward, and Macie teaches me every day what it means to face life with courage and hope.
