by Aliya Musselman, Senior Associate, Advancement Resources
When we think about healthcare experiences involving children, we naturally focus on the perspectives of parents that drive meaningful philanthropy. But there’s another perspective that is important to consider: the perspective of the children themselves.
When I was 11 years old, I was diagnosed with AML (Acute Myeloid Leukemia). At the time, I didn’t even know what Leukemia was, let alone that it was a type of cancer. The day I was diagnosed, my life as I knew it stopped. No more fifth grade, no more dance class, no more soccer. I was immediately taken to the hospital. Everything I loved and had worked so hard at was gone.
At the hospital, my world was confined to an isolation unit. There was constant worrying about getting sick because my immune system was so weak. Morphine provided relief from the pain, but the side-effects of chemotherapy brought new challenges. I was constantly nauseous—so much so that I quit eating because I got weary of throwing up all the time. Many days, I was so tired that I could barely wake up.
To help keep my mind off of feeling miserable, the hospital staff made sure that there was always something fun to do. Many activities involved child life specialists.
The Music Lady would bring her guitar into my room, and we sang songs that I enjoyed. Once, just before Father’s Day, we created a parody of the “Rubber Ducky” song from Sesame Street called “Thank You, Daddy.” I sang it for my dad as a Father’s Day present.
The Art Lady would bring all sorts of projects for us to do together. One was a floor mat with a color-in-the-lines picture of butterflies and the saying, “One Day at a Time.” I really liked butterflies and painting, so it was wonderful. I put it at the entryway of my hospital room; then, at my bedroom door at home after I was discharged from the hospital; after that, in front of my apartment door in college; now, in front of the door to my condo. It is a reminder to take each day “One Day at a Time.”
For a while, I had a port on my chest near my heart, which was very sensitive. The needle had to be changed every two weeks. The procedure involved taking off the medical tape and gauze, cleaning with iodine and alcohol, taking the needle out, putting one back in, and then re-bandaging it all. I would dread getting this done and became so upset that I’d get sick. But then I got a new nurse, Dom, who was so gentle and patient. He would talk me through the whole process, and before I knew it, the procedure was done. Whenever needle-changing time came, I would ask for Dom by name.
One of the common procedures that I would need to have was a spinal tap. There were usually at least three people in the room—one to do the procedure, one to hold me in place, and one to distract me from what they were doing. The person I remember, though, is the one who distracted me. She had a way of engaging with me that was calming. I recall several times when she read me joke cards. Here I was in a situation that was scary and painful, but all I could do was laugh hysterically at those silly joke cards.
I received a bone marrow transplant from my brother, but I still needed to stay in the hospital to get my immunity and blood count back up. The nurse would quietly draw blood at 5:00 a.m. each day before my physician and her team made their rounds. Each day, we’d mark a chart on the wall of my rising blood cell count and have a mini-celebration. The Music Lady and I wrote our own version of the “Banana Boat Song (Day-O)”: “Tally me my count-O. Daylight come, and me wanna go home.”
These experiences drove a deep desire, even in an 11-year-old, to give back. Soon after I went into remission, the institution was dedicating a new wing in the hospital for children with Leukemia. The staff knew I loved music, so I was invited to sing at the grand opening of the new wing. I sang “We’re Walking in the Air” with my mom accompanying me on piano, my dad on guitar, and my brother on trumpet. It was a unique way to give back, and it was deeply meaningful to me.
Today, I remember my physicians and nurses better than my teachers. I remember my child-life specialists better than my classmates. Those extraordinary people had a profound impact on my life, but not just with the care they provided. Yes, my cancer is now in remission and I’ve been able to live a normal, healthy life for the past 16 years, but the overall experience—keeping me calm while changing my needle, using art as a way to connect me with the outside world, distracting me with jokes during the most painful procedure—was truly life-changing and memorable. And for that, I will always be grateful.