On September 1, 2023, Sofia was diagnosed with pre-B-cell acute lymphoblastic leukemia (pre-B-ALL). She was three. Today, I will share the story of her diagnosis and our journey thus far.
A few days before September 1, maybe two weeks before, was when Sofia first showed signs of leukemia. At the time, we, of course, had no idea her symptoms were signs of leukemia. Leukemia symptoms can be very subtle and can easily go overlooked/misunderstood, particularly in a young child still developing with language and expression. The first thing we noticed was she had developed a strong desire to watch Netflix and cuddle. We had done some traveling recently, and Sofia likes her chill-at-home time. No big deal. It became more and more apparent she only wanted to watch TV. We started thinking maybe she's getting too much screen time. So, we tried taking her to the park and her friend's house a few times and took her for frequent little outings to try and pique her interest with other activities. She seemed interested in doing these things but still wanted to sort of cuddle on the couch or be in a blanket the entire time while out of the house. Even with her friend, she didn't have much interest in toys and instead wanted to watch movies with her friend on the couch. In a few days’ time, she started to have low-grade fevers that would fade quickly. It seemed she was acting a little under the weather but otherwise fine. Then one day, Gary found her sitting on the stairs, sort of resting. Keep in mind that Sofia is an extremely active and physically capable child. So, this was definitely weird. The next day, Sofia had a potty accident, and she had never had even a single potty accident before. We started thinking that if she has low-grade fevers and is a little fatigued, perhaps she has a urinary tract infection. I immediately booked a next-day sick appointment with the pediatrician. When we brought her in, before we left the house, we noted she had a 102° fever. I thought to myself, okay good, whatever she's fighting is establishing itself. We can get to the bottom of it, and she'll get some antibiotics.
Normally, Sofia likes going to the doctor. But today, she hid underneath the table and cried when the doctor came in. I thought this was odd, but I knew she wasn't feeling well. She's three. We explained to the doctor what had been going on. He examined her and had her do a urine test. Since she had a fever, he agreed she was fighting something, but she didn't really have any other symptoms. The urine exam came back negative, so he went ahead and ran a quick blood test. He also mentioned our thought process of a UTI was really smart and logical, however, he didn't think that was causing the fever, but something was. When he came back into the room, he pulled up a chair and sat down with papers in his hand. I thought that was odd. Normally they just stand at the computer. When he spoke to us, he explained that something highly unusual came back in her blood work. He circled some figures and explained that her blood counts were off by a massive amount. He also said he ran the test three times to be absolutely sure, but something was very, very wrong, and Sofia needed to be taken straight to the ER to have more bloodwork done. He wasn't sure what was going on, it could be a virus she was fighting really hard, but it could also be something serious like leukemia. He said he would call the hospital and let them know we were on the way there. We went straight to the ER.
When we got to the ER, they immediately did a full bloodwork panel. We waited for a while. Eventually, an attending came in. I was sitting in a chair, and the doctor pulled up a chair again. This time, right in front of me. Gary was sitting next to me as well. I can still see the attending's face in front of me, sort of moving in slow motion, with a hand reaching out to rest on me. I thought, this is so weird, I don't think a doctor has ever reached out to touch me before. Then I realized why. I see his lips moving, but I can't quite make out what he's saying. Then I hear it. He's telling me Sofia has leukemia. Sofia? Leukemia? I look at my daughter on the hospital bed. She's watching her tablet. My daughter has? Can't say the word. Can't find any words. The attending leaves. I go to the bathroom and sit on the floor. I realize I've been yelling and sobbing and that's why they had me go to the bathroom, so Sofia couldn't see or hear me. From there, our existence was permanently altered. We were admitted to the cancer wing, how strange. We don't belong there I thought, but there we were. And we did belong there. And the doctors and the nurses start to pile into our little room in large numbers. There are attendings and the floor manager and so many nurses. There are bags of blood being hung. There's a lady who is a nurse but seems like a manager bringing me a binder and shaking my hand. Day by day, we slowly began to learn who these people were and realized we would see these same people over and over again, multiple times a week, for the next several months.
We went through all the treatment phases, one by one. Induction was the worst. The others weren't exactly a vacation either. Each phase of treatment sort of had its own little horrors that came with it. We were isolated from September 2023 until May 2024. We saw no one except our care team. Two to three days a week we spent in the hospital with long stay admittances as well. But we were lucky to even be moving forward with treatment at all, right? This time last year we were in induction still. It feels like a slow, anticlimactic horror movie we lived in for a while. But we also became experts. We learned how to navigate the health system. How to get things done. Which doctor needed to be told what and when. How to manage depression and anxiety and function through it, even when it felt impossible. We became cancer parents. Expert ones at that.
We are still in ongoing treatment, and thankfully Sofia showed early remission signs and has stayed that way. We are currently in maintenance, and Sofia was able to enroll in school for the first time this fall, Pre-K. If all goes well, Sofia may graduate from active treatment as early as December 2025. Pediatric leukemia has a high relapse rate, however, so there is still a shadow over our heads that I can only hope one day won't be there anymore. But with this traumatic, life-changing diagnosis also came support. So much support. From people and places we didn't know existed. People from the past we thought had long forgotten about us. People we didn't know well, even complete strangers. The most amazing, state-of-the-art medical team, Levine Children's Hospital, their Pediatric Hematology & Oncology Clinic, and organizations like Blood Cancer United. As a cancer parent, they make you feel seen, acknowledged, important, and not alone. It is so easy to get lost and be just a number in the healthcare system. The healthcare system has this crazy effect of making the most horrible experience of your life seem like any old ordinary thing from the eyes of a healthcare system. People and children die every single day, tragically. But Blood Cancer United and other foundations make sure you know that you are not just a number or statistic, not just any other patient. They make sure you know people out there care, not just about your child's well-being but also take the time to reach out and understand your journey, and what you're struggling with, and let you know that you are significant and your child's life matters ― so much that they built this organization just for people like us.
- A parent wrote this story.
Sofia
pre-B-cell acute lymphoblastic leukemia (pre-B-ALL)
