B-cell acute lymphocytic leukemia (B-ALL)
Sofia’s story starts in November 2022. Actually, it starts on March 17, 2019, when she was born. She has been my fierce, independent, strong-willed little girl from the get-go. Once she started walking, she was an unstoppable force. Contrary to her cautious, older brother, Sofia seemed fearless. She loved to climb to the top of the playground structure meant for kids twice her age. She loved gymnastics and took after Mommy with her love of the bars, anything she could hang or climb on.
She became sick with RSV in October 2022, and then after it seemed like she had recovered, she came down with another respiratory virus. It was very unusual for her not to bounce back. My husband and I noticed her losing weight, her appetite decreasing, and her skin turning pale. She was lethargic, not her usual energetic self. She wanted to nap and be pushed in a stroller. We knew something was wrong.
Right before Thanksgiving, we expressed to our pediatrician our concern and asked for a blood panel. My husband took her to get her blood drawn the Monday after Thanksgiving. On Tuesday morning, I received a phone call at 8:00 a.m. from a nurse. The nurse asked where I was, and I said at home. She said she had tried to reach me at night, but my phone was on silent. She said she had sent a police officer to our home at 1:30 a.m. because the hospital was trying to reach us. She told me I needed to drop everything and take my daughter in right away. My daughter having cancer never crossed my mind. However, over the course of 24 hours, my husband and I would hear it confirmed. Our daughter Sofia was diagnosed with B-cell acute lymphocytic leukemia (B-ALL) on November 30, 2022.
She stayed in the hospital for three weeks. Our only prayer was that she would get to come home for Christmas. And it was answered! We were able to leave on December 20. She had a lumbar puncture and bone marrow biopsy on December 29 to determine if there were any more leukemia cells in her bone marrow. We found out on January 3 that her bone marrow was clear, and she was in “remission” but with treatment for the next two years.
She is currently taking oral chemo at home. We are still early on in this journey but optimistic for the future! Sofia’s a fighter and so strong. We have been amazed at her resilience these last two months.
We own a fitness studio and are running a cardio challenge during the month of February for our clients. All proceeds will go to The Leukemia & Lymphoma Society (LLS) to further this fight, not just for Sofia, but for other children and families just like ours.
For our family, what was most helpful for us while we were in the hospital was tangible help ― people who didn't need answers or ask a lot of questions. They just took it upon themselves to send the DoorDash gift card or set up the meal train. We had friends who offered to come visit, but at that time, with my daughter immunocompromised, we just wanted to isolate and keep her healthy. People who sent us funny videos, gifts, and balloons also helped keep our spirits high.
As soon as my daughter was diagnosed, I knew there had to be an organization out there and quickly found LLS on Instagram. As we started sharing her story, I also heard about it through local friends who had been involved with LLS personally.
Two phrases that helped get me through were "Keep moving forward" and "God is still good."
We are so much stronger than we think. It sounds cliche, but as humans, our strengths come out when we are going through challenges/hard things. I would also say lean on your community. We're not meant to walk through hard things alone, and there's no way I would've made it through without a very strong support system. During those three weeks we were in the hospital, we had to "bubble ourselves" from the outside world to protect our mental health. Don't feel obligated to answer questions or get back to people right away. Those who truly support you will understand and show up when needed.
The biggest life lesson I learned through all this is that we are not in control. As a parent and an adult, I'm constantly looking for validation that I'm doing "the right thing." After my daughter's diagnosis, I had to release my guilt that there wasn’t anything I could have done to prevent it. We don't know why she got cancer, and though that is frustrating, there's also peace in knowing we're not in control, God is, and thank goodness!
Written by mom