Nevaeh was diagnosed with acute myeloid leukemia (AML+MLLr)+CNS chloromas on February 2, 2022, at 12 months old. Nevaeh first showed symptoms of high fevers, no appetite, and little to no energy. After a trip to the ER, a few tests, and x-rays, I was told Nevaeh had COVID and pneumonia. She was discharged with instructions to go back if her symptoms worsened. The following morning, Nevaeh’s health was declining. I called 911, and she was rushed to the ER and admitted to the pediatric unit. More tests were done, and by the following morning, her pediatrician said we would meet with the oncologist by the end of the day because they had results of blast cells appearing in her blood.
A few hours later, the oncologist walked in and gave us the worst news any parent could hear, “I’m sorry but your daughter has leukemia. Leukemia is cancer. Your daughter has cancer. At the rate her cancer is progressing, if she does not begin treatment now, she will not make it. She has chloromas forming in her face/eyes . . . (moment of silence) . . . you have to say goodbye to your daughter and husband. This will be about a 30-day inpatient stay minimum, I’ll see you later, baby, mommy needs to stay with sister.” We then got wheeled off into the pre-op room where I met with several teams and signed consents. A Hickman line was placed, and by the morning, I was already discussing my two options. I opted out of standard treatment and enrolled Nevaeh in a clinical trial.
Nevaeh endured five rounds (56 doses) of intensive high-dose chemotherapy with several complications in between that caused her to go into sepsis, seize, and become unresponsive. After six and a half months of gruesome treatment, lengthy hospital stays, and isolation, Nevaeh rang the end-of-treatment bell at Loma Linda University Children’s Hospital signifying she had completed treatment and was in remission on August 15, 2022.
Thankfully, Nevaeh remains in remission and cancer-free today. She is the embodiment of power and courage. Her strength, progress, and relentless growth are my inspirations. Nevaeh has multiple specialty doctor visits. She’s currently seeing an ophthalmologist, pulmonologist, audiologist, and dentist, aside from still seeing an oncologist every two months.
While in the midst of everything that was happening, I looked for resources and information on pediatric AML. The Leukemia & Lymphoma Society (LLS) provided me with several booklets and resources.
LLS will be honoring my daughter as a Pediatric Honored Hero for the Inland Empire 2024.
Nevaeh
acute myeloid leukemia (AML+MLLr)
