Avery was diagnosed with ALL in April of 2020 when she just turned 6 years old.
At first, she complained of neck pain for a couple of days. Then she complained of leg pain. We called her doctor and she told us since no fever just to monitor for now. Due to covid and the shutdown, they didn’t want to bring any unnecessary doctor visits.
She then started to have a low-grade fever and feel more fatigue. Again, we called her doctor and her doctor again told us to monitor and not bring her in for an exam since it’s only a low-grade fever. Each day, her pain would move around. One day it would be her leg then the next day her arm and the next would be her hand. It just constantly jumped around.
After a week of low-grade fever and random pain in her body, she started to have a high-grade fever. Again, we called her doctor through zoom due to covid. They told me to monitor her again and call back if her high-grade fever lasted more than a week. It did and she was in a lot of pain night and day. The next day we called her doctor again, and that time Avery was screaming in excruciating pain during our zoom conference with her doctor. Finally, they told us to bring her to urgent care right away.
Once we brought her to urgent care, her pain faded. The doctor at urgent did a flu test, chest x-ray, and throat swab to rule out any flu or strep throat. I was hoping it was positive but it wasn’t. Then, they decided to draw a blood culture to rule out any bacterial infection and told us to bring her in for a covid test the next morning. The next morning we brought her into another clinic for a covid swab and right after we got home, her urgent care doctor called us and told us to pack our stuff and bring her to the nearest hospital right away. She told me to write down her blood count numbers.
As soon as the doctor told me to write down the blood count numbers, in my mind, I already know this must be really really bad. As I hurriedly grabbed a pencil and paper and write it down as the doctor told me her numbers over the phone, when she said white blood cell 570,000, I knew this must be blood cancer. I brought her to our nearest hospital. As soon as I got there, I cried as I parked my car. I knew it was leukemia and I can’t believe my little girl who was only 6 years old has cancer.
She has been through port placement, 3 dialysis, blood transfusion, 8 bone marrow biopsy/aspiration, x-ray, MRI, echocardiogram, car t therapy, chemotherapy, 50 plus days in-patient, numerous needle pokes to draw blood, and finger pricks. We have help from family members to watch our younger one when we have to take her out of state for any new treatments or any hospital visit due to covid restrictions.
She used to cry a lot during the first month of diagnosis and staying at the hospital getting all those needles and tubes poked into her little body. Over time, she got stronger and cried less and whined less which made it a lot easier not just for the nurse and doctors who are treating her but also for me.
Before her diagnosis, I was scared she got covid and wished it was just the flu she caught. After diagnosis, I wished she caught the covid and not leukemia. However, two weeks into treatment, we received even worst news. Her leukemia is so rare that it’s more aggressive and harder to treat with a poor prognosis…I wish it was the most common type and easier to treat with a great prognosis type of leukemia.
Hope session by Rebecca Brookstein Photography | Instagram