Nevaeh was diagnosed with Acute Myeloid Leukemia at 12 months old. Prior to diagnosis, Nevaeh was experiencing high fevers, lack of appetite & no energy for two days before I decided to take her to the ER. She was then swabbed and tested positive for COVID along with pneumonia. We were discharged and told if she worsened to take her back in.
The following day, January 26, 2022, Nevaeh was rushed to the hospital for troubled breathing and a high fever of 104, she was admitted for what we thought was an overnight stay, wrong!!! On January 28th, Nevaeh had “blast cells” appear in her blood, she was closely monitored for 3 days before being discharged to meet with an oncologist within a 2-day frame. February 2, 2022, Nevaeh woke up with her temples extremely swollen, we were just a few hours short of meeting with the oncologist. By late afternoon we had an official diagnosis Acute Myeloid Leukemia FLT3/TKD – KMT2A/MLLT3.
Nevaeh has gone through 56 doses of high-dose intensive chemotherapy, 18 blood transfusions, 11 platelets transfusions, 8 bone marrow aspirations & lumbar punctures, EKG, CT scans, MRI, ultrasounds, hair loss, neutropenia, immunocompromised, X-rays, coding once, sepsis, chemo rash, tachypnea, surgery, physical & occupational therapy, 29-35 inpatient hospital stays with a one week break given at home in between each cycle, totaling 5 cycles 6.5 months long before being declared cancer free and in remission, ringing the end of treatment bell August 15, 2022.
Although she is no longer in active treatment she continues to go to the clinic for monthly labs and has recently started seeking treatment with various specialists. (Audiology, Ophthalmology, Pulmonologist, Dentistry, Psychiatry, Allergist & Physical therapy)
Since the start of diagnosis, we had little to no help from family and friends. We were left facing this journey with our daughter on our own. The thought of losing my daughter to such an aggressive & rare leukemia found in children is gut-wrenching. She deserves more than what this life has given her.
Cancer diagnosis has changed our lives. My family fears the thought of Nevaeh relapsing and us having to be separated again. I fear for what the future holds for us as a family. I grieve what our life could have been like if there had never been a cancer diagnosis.
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