My Family's Cancer Struggle Brings Attention to the Need for Black Bone Marrow Donors
I had cancer at 14 years old. My daughter was diagnosed at 5. We both beat it after being treated by the same doctor, but the fight brought to my attention the shortage of Black bone marrow donors.
I was never the type of kid who complained, so when I noticed a bump on my neck after a ride at the Coney Island amusement park in Brooklyn, I didn't say anything to my mother. My hair was long and covered it, so that's all I was concerned about. But during my annual checkup, I was initially misdiagnosed and told I had tuberculosis. Within three months, the official diagnosis was stage 4 Hodgkin's lymphoma. I had cancer at 14.
Instead of preparing for high school pep squad tryouts, going out on first dates, and attending school dances, I was suddenly the girl in a bubble at Long Island College Hospital. Then I was transferred to Memorial Sloan Kettering Cancer Center where I met Tanya M. Trippett, M.D., a pediatric hematologic oncologist, and her lymphoma team who gave me an in-depth diagnosis that the other hospital brushed off. Oddly enough, I was never really scared or afraid to die like I'd been often asked. I was more worried about losing my hair. Because my hair was so long, I was able to cover up the patches and bald spots for a little while until I did eventually lose it all.
The cancer spread from my neck to my stomach which led to intense chemo and radiation. It kept me in hospitals, at home, and at cancer camp during the summer for three years. I returned to high school at the end of my ninth grade year shy, alone, quiet, and cancer-free. That year, I was told I would never have children.
Six years later, I gave birth.
My Daughter's Cancer Diagnosis
My daughter Kayla had just turned 5. After a train ride back from day camp she ran after a bird and fell. A few days later she complained that her right knee hurt, but I thought it was just from the fall. Nothing was visibly wrong, so she attended summer camp and stayed with her aunt for the weekend. Her aunt said Kayla's stomach was bloated, and she hadn't used the bathroom. She was treated for constipation for a week with no success, which led her to the emergency room.
A CAT scan showed a big mass in her stomach. My baby girl was diagnosed with non-Hodgkin's lymphoma; they thought it was hereditary and started Kayla on chemo. I was terrified.
My sister demanded we take my daughter to Memorial Sloan Kettering, but I couldn't afford it on my salary. I had started to give up because I felt defeated, but my sister wasn't having it. She said, "We need to find your doctor; we need to find Dr. Trippett."
Two young Black women attempting to speak to a doctor at one of the most prestigious hospitals in New York didn't seem likely. But we believed we could get to her. It had been 13 years, and she was now head of the lymphoma clinic. We snuck up the elevator, but she was not there. I left only my name and number and never expected to hear back from her. Within days, she called. She actually remembered who I was, and I just started to belt out what was happening with my daughter.
"OK," she said. "I will call you back." I knew she meant well but I never thought I would hear from her again. In 30 minutes, she called. "Are you sure you want me to take over?" she asked. When I tried to repeat that I couldn't afford it, she reminded me she didn't ask about money. Again, "I will call you back," she said. This time she told me I had to sign a waiver to release liability. I wasn't sure if it was the right thing, knowing if my daughter died, it was my fault, but I thought she might die where she was.
Within 15 minutes an ambulance showed up for my baby girl. After 30 minutes, she was going into organ failure and blew up like marshmallow. She was instead taken to NewYork-Presbyterian/Weill Cornell Medical Center's emergency room across the street from Memorial Sloan Kettering and was placed on dialysis in ICU.
I got angry. I couldn't help it. She was in intensive care for a month. The diagnosis was Burkitt lymphoma, stage 4, aggressive. Her tumor, that had started in her right knee, grew every 18 hours. As much as I trusted Dr. Trippett, I won’t lie, I was worried.
Chemo wasn't an option because her organs were beginning to fail. Everything was trial and error. She had a code red in intensive care when the dialysis machine malfunctioned. My daughter was whisked off to surgery. She had mouth sores which shut her mouth. My daughter was just skin and bones, being flown to hospitals around the country for treatment plans. We were looking and willing to try anything.
The Road to a Remission
Black people don't usually donate bone marrow. Reasons include mistrust in the medical system because of discrimination and lack of awareness. Black people have about a 23 percent chance of finding bone marrow donors compared to 77 percent of white people. A person’s best chance of finding a donor may be with someone of the same ethnic background. An article in NPR explains that Black people have a smaller pool to draw matches from than white donor seekers because of their mixed heritage and lower donation rates. And, of course, a bone marrow donor might have helped my daughter, if she were a candidate for one, but for reasons I can’t quite remember, that treatment was not an option for Kayla.
It looked hopeless. Doctors said she wouldn't live past her sixth birthday and suggested we take her home and make her comfortable. They offered to grant her a Make-A-Wish.
Again, I was angry. I felt abandoned. My father passed away right after Kayla was born and her father and I were estranged. My support system consisted of her grandfather on her dad's side, my sister, and mother. Her grandfather visited daily after working overnight with Metro-North. He would help me so I could get a break and catch my breath.
Luckily there were other treatment options. It took two years for my daughter to rebuild her immune system and go into remission. During this time my boss became my best friend and the attorneys I worked for supported us that entire time I was on leave from work. I would later learn that it was Dr. Trippett and her medical team of friends who also supported Kayla and me throughout this entire process. They were not only there for me emotionally but they financed all of her treatment.
When Kayla was well enough for cancer camp, at age 7, she was more social than I had been. She wanted to go to school and couldn't wait for homeschooling to end. During those first five years of remission, Dr. Trippett and I stayed in touch daily until life happened, and we lost touch. Still, I know I can call her right now and it would be like no time has passed.
Now in her senior year of high school, my daughter is a star honor student who never gets sick, is 6-feet tall, and plays basketball for her school in upstate New York.