Katharine L. Modisett, MD
Parents have mantras. “Wash your hands.” “Make eye contact when you’re talking.” “Remember the Golden Rule.” When our 4-year-old daughter was diagnosed with acute lymphoblastic leukemia, I found myself repeating a new one: “We have choices with some things and not with others.” Childhood leukemia is not a choice anyone would make. It seemed especially unbelievable to be handed this diagnosis after I had spent the previous 11 months staring down death and injustice daily as an intensivist during the COVID-19 pandemic. Vaccines were just becoming available when our daughter was diagnosed and the sense of relief that the rest of the world felt was lost on me. I remember coming home and opening the door to our house for the first time after learning Evelyn had leukemia and just declaring to my in-laws, “What the $^&*!??”
The first night I was in the hospital with her, we were admitted through the emergency department with a hemoglobin of 3.9 and no diagnosis. My husband and our 15 month old were home when we called on FaceTime to tell them we were staying. I was trying to mime through the tears how serious the situation was to my non-medically trained husband while my daughter was clarifying which of her Barbies she needed him to bring the next day. On the pediatric medical floor, I watched her like a hawk, and when she spiked a fever of 102, she was ordered Tylenol. She refused and refused and no amount of cajoling or bribing or explaining or waiting was working. I felt terrible as I squeezed the plunger in between her clenched teeth and even worse when we debriefed afterwards. She likened me to “the evil stepmother from Cinderella.” That was the last time I had to force her to take medication. It was the last time I turned into a version of myself I hated.
We didn’t have a choice about leukemia. I did have a choice about how I was going to parent through this hell. I became a fierce advocate for her. I knew I was part of a system that made mistakes and often times didn’t keep a patient as its center focus. I was not ready to relinquish complete trust in her care team. I felt one of the most dangerous places for our daughter to be was in the hospital or clinic, and therefore I resolved to stay by her side. For the next 2.5 years, she had only a single blood draw for which I could not be there. And yes, I was that parent asking the nurse to wait another few seconds for the alcohol to dry before connecting the tubing to her MediPort. I also wanted to empower our girl—I didn’t want her to become a disemboweled vessel for chemotherapy. She needed to make her own decisions and choices when she could. She needed to have some autonomy over this little body that had decided to let its genetics go off the rails, wreaking havoc inside and out.
One thing we could control was how to take medications at home. These twice daily medications were in addition to all the infusions, transfusions, and lumbar punctures she endured. Our pediatric oncologist cautioned us against neglecting this part of our treatment plan, citing statistics about noncompliance and recurrence of disease. This responsibility did not land lightly on my husband and myself. When it came to helping our daughter take her medications, nothing was off the table for getting this done to help secure her odds at a good prognosis.
Even though we were determined, it was not easy. When we were discharged home, we found the process of getting our daughter to take her medications like a freight delivery—the last mile was the clinch point. We had the prescription, the insurance authorization, a pill box (she compared hers to her Grandpa’s), a pill splitter, and a monthly schedule printed by our team. We tried putting meds in applesauce (too yucky), in cake frosting (too sweet), and just with sips of water (too hard to swallow). The frightened and rationalizing part of me then found myself on PubMed looking at studies from decades ago showing the high binding affinity of chemotherapy medications and dairy products. Why hadn’t our team told us this? What else weren’t they telling us? Did we just increase our daughter’s chance at recurrence with that week of yogurt-laced meds?
I don’t remember how the idea of pumpkin pie as a substrate came into the picture, but it stuck. Our gloved hands easily squished the pill fragments into the center filling of the dessert. Our daughter was able to swallow several bites with whatever mercaptopurine, methotrexate, famotidine, amlodipine, dexamethasone, or trimethoprim-sulfamethoxazole she was slated to take that day. For months, we lived pumpkin pie to pumpkin pie. We had the brand name boxed versions stacked in our freezer. We went grocery store to grocery store to find any baked fresh. My mother offered to travel 500 miles to make a homemade version. During the summer months, I asked bakery managers about their stock and was told they were only baked seasonally, “although, the older folks would love them year-round.” If they only knew! As long as we had a pumpkin pie in our possession, and at least one or two as back-ups, we had some sense of control.
The pies went with us wherever we went. If it was a day trip, we would scoop out the filling and put it in a plastic container inside her little red lunchbox that held a disposable spoon and all her medications. Our longer trips during those years were never more than an hour away from a children’s hospital, and we always had at least one whole pie. We became accustomed to living our lives on a short leash bookended by our phone alarms going off twice daily and our younger daughter’s punctuated shouting, “Meds!” We sought to give our kids as normal a childhood as possible with leukemia in the background. Ironically, our daughter never was worried about the pumpkin pie—she took her meds twice a day without a fuss. She never asked if we had a pumpkin pie or not, and we tried to shield her from all the behind-the-scenes acrobatics to make sure we always had one…even in July. The fact that she wasn’t anxious about the procurement of pies felt like a success.
While we were rarely asked about compliance at our clinic appointments, I yearned to tell my physician colleagues what I had discovered that they hadn’t taught us in medical school: this part is way harder than calculating a dose and sending an e-script. No one tells you how hard it is, but we are doing it. We are doing it! Could our attending physician empathize with us? She had her own children too. Did she ever imagine herself in my shoes? Did she think this was easy to do? Or that we were lucky because we were standard risk? By not asking me about anything more than symptoms and side effects, I felt the distance between myself and the attending widen.
It’s now been a year since my daughter has had any chemotherapy. She has no signs of recurrence, her hair has grown back, and she is soaking in the pure joy of being a kid. When her treatment finished, we decided to move across the country for a fresh start. In that frenzied time as the packers descended on our home, the stockpiled frozen pies were discarded in the compost. However, two cans of pumpkin pie filling followed us and sit in the pantry of our new home. I imagine I’ll be able to throw them out once they reach their expiration dates. While I will always be grateful for those pies, I will never look at that Thanksgiving dessert in the same way. My hope is that my daughter will have many, many holidays where she only associates pumpkin pie as deliciousness shared with loved ones. I will feel success if I need to remind her of what they once meant for our family.
Dr. Modisett is a practicing critical care physician in Denver, CO. She can be reached at [email protected].
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