acute lymphoblastic leukemia (ALL)
On June 21, 2019, my sweet, goofy, little boy, Samuel, turned 3 years old, and we had a big celebration. We threw Samuel a beautiful birthday party surrounded by family and friends at a local farm. The kids played, fed the farm animals, went on pony and tractor rides, and ate pizza and cake. It was a day Samuel still remembers and talks about. He has always been so bright, even as a baby, saying words like “tickle” at 10 months old.
Samuel spent the summer days after his birthday at school while Joe and I worked. He’s always loved school, and we always have loved his teachers. The summer was full of fun, water play, and outdoor activities. Weeks leading up to Samuel’s cancer diagnosis, I noticed he had been extremely tired. My initial thought was that he must have worn himself out at school playing in the sun. He started to come home with bruises on his legs, and every time I’d ask him what happened, he’d say he fell on the playground. Samuel then started to have a low-grade fever. I started to worry more when he started telling me his stomach hurt, this was on and off for two weeks. I even asked his teachers if he had said anything at school, but he hadn’t. So, I chalked it up to constipation. At the time, I had been packing for our first family trip to Disney World and had hoped Samuel’s “cold and constipation” would resolve by our planned trip on August 13.
On August 6, 2019, Samuel’s teacher called me at work and told me that he just wasn’t acting himself. I left work early to pick him up and take him to the doctor. I thought maybe he needed antibiotics for his cold and wanted to make sure he got them before our first, big, family trip. I took him to our pediatrician, whom I absolutely adore. I told her about the low-grade fever, the stomach aches, the bruising, and the overall tiredness. She gave him an exam, felt his belly, and then told me to go to the room next door for an abdominal X-ray. She said she’d call me later with the results. I left with an uneasy feeling. When we got home, I started googling, and my heart sunk. All the symptoms Samuel was experiencing sounded like leukemia. But no, no, no, that’s just silly to even think that, remember don’t be “Dr. Google,” maybe it’s an infection, it’s got to be something else. Joe left for work that evening as he works on road construction. I got both boys in the bathtub.
At 7:00 p.m., the phone rings. Dr. Pola tells me that I needed to take Samuel to Advocate Children’s Hospital in Park Ridge. My heart sinks. She tells me that there is a specialist there she wants Samuel to see. She tells me the X-ray confirms his spleen is enlarged. I remember her saying, “Don’t worry, just make sure you get to the hospital to get his spleen checked out, and I’m going to call them and let them know you’re on your way.” Okay, so my thought, there’s an infection in his spleen, that’s got to be it. That explains the low-grade fevers and the stomach aches, right? I called a friend to come to watch Luke (my youngest was one at the time), and Joe met me at the hospital.
In the ER, we were visited by many doctors over the next couple of hours, all asking us to tell them the same story over and over. Repeating all the symptoms. They kept asking me about the low-grade fever, the stomach aches, the bruising, and the overall tiredness, over and over again. My heart was sinking lower and lower, and my thoughts were racing, yet everything felt like the world was slowing down. I uttered in my head, “This isn’t normal. Is this leukemia? Was Google right? Why are they asking me the same thing? No, no, no, that couldn’t be. Samuel is big and healthy.”
At 12:00 a.m., I fell to my knees. The ER doctor confirmed my worst nightmare. Did I really hear her say, “I’m so sorry, your son has CANCER”?
This can’t be happening.
My heart shattered in an instant as if it had exploded like a grenade in my chest. I couldn’t feel my body. The only feeling I had was in my chest, the piercing pain dug so deep, my baby, my baby, my baby, no this isn’t happening. No. Not cancer, please God, no.
I ask, “Is it leukemia?” as I struggle to enunciate each word, barely able to catch my crying breath. She says, “Yes, we are almost certain it’s leukemia.” It was very high risk acute lymphoblastic leukemia (ALL).
I wish I could describe the feeling I had at that moment. But as I type, delete, retype, and delete again, I know there are no words or ways or assimilation I can provide that would even remotely describe the kind of pain, failure, and heartache I felt in that moment. Even those descriptors don’t do justice. My 3-year-old son had cancer. My baby, BABY, has cancer. Every time I say it my heart stops. It’s an eerie feeling. I can literally feel the pause, the drop in blood pressure, the sinking in, and then the fiery physical pain in my heart. Yes, I can feel it. I think those other cancer moms and dads reading this know exactly what I mean, again I can’t put it into words.
The next couple of days blurred together. My face hurt so bad. My jaw was locked, and my head was in excruciating pain from crying and lack of sleep. I don’t think Joe and I slept a single hour in those first three weeks, not a single hour. This sleep deprivation doesn’t even come remotely close to the sleep-deprived parents of a newborn. This was entirely different. The doctors spent those weeks stabilizing him and running so many tests to determine what type of leukemia Samuel had. They threw out so many horrible possibilities. Did he also have lymphoma? Was it T-cell or B-cell, was there cancer in his spinal fluid? In his brain? When would he be stable enough to have his port surgery? Bone marrow biopsy? How many more blood and platelet transfusions?
For parents of a newly diagnosed child with cancer, all you want to know is if he will live. Will he make it? Can he be cured? Will he live a long and healthy life? And when the doctor tells you they aren’t able to answer those questions with 100% certainty, it is the hardest thing to accept. There is so much heartache.
The first year of treatment was the most difficult time of our lives, watching our son battling cancer and in so much pain. Today, Samuel is 5 years old and is still in active treatment for very high-risk, pre-B-cell acute lymphoblastic leukemia (ALL). He takes chemo at home every day and visits the hospital monthly for a chemotherapy transfusion through his port and spinal cord. His end of treatment date is December 9, 2022, and we are hopeful to hear those words, "Your son is cancer-free."