We said goodnight to friends and I began to clean up the kitchen. My mind was troubled. Why wasn’t Justin playing with the other kids? I had taken him to see three different doctors and had two set of x-rays done, yet he still complained of hurting feet. I had put him to bed earlier with a dose of children’s ibuprofen.
A loud, frantic scream broke my thoughts. I froze. And then another. I abandoned dirty dishes and moved quickly to Justin’s side. Jeff was already there.
Justin was sitting up in bed, tears streaming, feet kicking; as if he could kick the pain away from him. I sent Jeff for an ice pack and took Justin in my arms. He was burning. I carried him with me to grab the phone. I dialed the number for our pediatrician, although I had already decided he was going to see a doctor that night.
Midnight. I did not want to wait for a sitter to come so we decided Jeff would stay home. I was all silent prayers and steady hands as I drove to Virtua pediatric emergency room. I denied it, emotionally, just enough to function. But, inside I knew something was very, very wrong.
Another set of x-rays and a blood draw. The IV placement was the worst part. Or maybe carrying him to radiology. I don’t know. It was all kind of me being determined to get answers, ignoring the I hate yous and tiny punches finding their mark on my back.
3 AM. Justin finally dozed off. My phone was dead. I needed water or coffee or something. I asked the nurse to watch him, found a diet coke and left my phone at the front desk charging station. Walking back to his room, I noticed the emergency room was eerily quiet and still. Then the doctor was there.
It’s funny what you can think about even when receiving bad news. She was talking, talking, talking. “Bone de-calcification, white blood cell count.” She has got to be eight months pregnant. “It could be rheumatic disease.” Arthritis? Like old people? “Red blood cell count.” Maybe even nine months. “We are transferring him to CHOP. Waiting to secure a bed. I’m going to call an ambulance right now. Lastly, I want to warn you so that you’re not blindsided.” Is she kidding right now? I am most definitely already blindsided. “I highly suspect that Justin has some type of leukemia. Do you have any questions?”
Her: Do you understand everything?
Me: What is bone de-calcification? Why didn’t the other doctors tell me that? I had his feet x-rayed twice.
Her: It means that the bones in his feet look like they have been eaten by moths. I pulled up his previous set of x-rays. It wasn’t there. The damage to his bones happened SINCE Justin’s last set of x-rays.
I tried to figure out the weeks. When did I have him x-rayed last? Right before Christmas. How long had he suffered? I didn’t know. I remembered, with guilt, sending him to school after he cried while putting on his shoes. But I couldn’t think because eaten by moths and leukemia rang so loudly in my ears; and that kind of hot, acidic stuff that definitely is vomit but you can swallow, still stung my throat. And there was no time for guilt.
Her: Do you have any other questions?
Her: I’m really sorry. Do you need anything?
Me: I need to use the phone.
This happened January 15, 2016, exactly one year before today.
I love the Lord, because he hath heard my voice and my supplications. Because he hath inclined his ear unto me, therefore will I call upon him as long as I live. The sorrows of death compassed me, and the pains of hell gat hold upon me: I found trouble and sorrow. Then called I upon the name of the Lord; O Lord, I beseech thee, deliver my soul. Psalm 116:1-4