Every three minutes, someone in the United States is diagnosed with a blood cancer. That is about 178, 520 people. Never did I EVER think that we would become part of this statistic. Yet, here we are. We account for the diagnosis made at 5:45 PM on April 17th, 2020. Our 13 year old daughter Adeline was given the initial diagnosis of leukemia based on bloodwork ordered by her pediatrician. So, how did we get here?
We had already been in isolation at home due to COVID-19 for five weeks. Adeline has always been a little anxious when it comes to her health, but with the pandemic she was extra anxious. She had been tracking cases since January. With schools closed and communities on lockdown, she was nervous about getting sick herself. She had been taking her temperature so many times that I actually had to take the thermometer away from her. Looking back now, her temp had been slowly creeping up in the week leading up to her diagnosis. I kept reassuring her that she didn't have a fever, that I would still send her to school with a 99* temp. It wasn't until it hit 100* that I began to wonder what was up. Her appetite was smaller and she had a lot of acid reflux at night. She also complained of a stomach ache when doing her athletics workouts (assigned from school). We chalked that up to the fact that she hates working out. I definitely pushed her to get her workouts in that week. I did all of them with her, as I felt she needed the moral support.
Wednesday, April 15th
After a particularly tough workout during which she complained a lot of stomach pain and took several breaks, I offered to take her to the ER. In the back of my mind, I didn't expect to take her up on it. I was trying to gauge how serious she was about the pain. She told me she didn't need to go to the hospital, but she came to me later that evening in tears, convinced that she had stomach cancer. She had been googling her stomach symptoms and was sure that it all added up to cancer. Of course we told her that she didn't possibly have cancer.
After her high anxiety the night before, I called the pediatrician's office for a tele-med visit. Having an anxiety disorder myself (more on that another time) I know that stomach issues can be a physical manifestation of anxiety. I felt that her stomach issues were most likely related to anxiety, but did not want to miss anything physiological. Adeline and I both visited with her amazing pediatrician, who took her concerns seriously. She agreed that it was most likely anxiety induced, but offered to order Adeline some bloodwork to rule out cancer (she as well had reassured her that the likelihood of her having cancer, specifically stomach cancer was incredibly small). Adeline declined, satisfied with taking some Prilosec and setting up some counseling appointments.
Later that evening, Adeline mowed the backyard. I snapped this picture with her new Airpods that she had just purchased with her own money. I thought to myself that she did not look well. As she was mowing, she kept stopping (again, not out of the ordinary for her as mowing was another of her least favorite activities). It wasn't until she threw up that I knew something wasn't quite right. She came in and immediately took her temperature. 101.1* Cue panic attack. I got her to take a bath and she was able to settle down a little. We took her temperature again before bed and it had come up a little to 101.8* Todd and I were stumped. She hadn't left the house in five weeks. Todd was the only one who had been anywhere in public, and he had been extremely careful. We watched her carefully throughout the night.
Friday, April 17th
I called the pediatrician first thing Friday morning. They scheduled an office visit for later in the morning due to her high fever. Her stomach was still bothering her. The only thing we could think of was potentially appendicitis. Her symptoms didn't line up with covid-19, or anything else that we could think of. We did a strep test and urine culture just to rule out things (both were negative). Our pediatrician ordered an ultrasound to look at her appendix. While we were waiting on the orders for that to be arranged, I was texting with my sisters. Amanda suggested that I ask for bloodwork since something was definitely not right. Dr. S agreed and off we went to the lab. She did a CBC along with some other tests to rule out some rare stomach bacterial infections. We really felt that it was her appendix, but thought that if she had an infection somewhere else that her white blood cells could possibly come back elevated. We did her blood work, but had to wait on her ultrasound. She had to be NPO for the ultrasound, so she couldn't eat anything until that was taken care of. Todd took her to the ultrasound as I had a prescheduled tele-therapy appointment. It was supposed to be my last appointment for a while, as my therapist was scheduled for maternity leave later in the week. We talked about how I was feeling about what was going on. Then I did some yoga and waited on Todd to return with Adeline from the ultrasound. We had just sat down to dinner when my phone rang. It was my pediatrician. She asked if Adeline was nearby and then suggested I go into another room. I went to the back porch and could tell by the shake in her voice that it wasn't good. I just remember her saying based on the results of the bloodwork, it looked like leukemia. Time stopped. I couldn't breathe. We talked for a bit, I scribbled down some notes from the bloodwork, and then she let me go so she could contact the hospital and arrange for our arrival. I called Todd outside and shared the news with him. We decided to tell Adeline the basics- the doctors needed to run more tests and that they were looking at cancer, but we didn't say more since we didn't have an official diagnosis beyond leukemia. We packed our bags and waited for the call from our pediatrician, and then headed to McLane Children's Hospital which would be our home for the next ten days.
In the time it has taken you to read this, two families' lives have been shattered with a diagnosis of a type of blood cancer.
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