Boy vs. A.L.L. - (Part 1) The Beginning

A Personal Story of My Family's Fight Against Childhood Leukemia

There was no reason to think it was anything more than a cold. Not at first. My husband had been feeling a bit congested earlier that week. It was a rational assumption. One my just-given-birth-two-weeks-ago-to-number-two could handle. But soon that "cold" turned into a fever. A fever that couldn't be shaken. It was soon followed by lethargy. My usually active two year old could hardly walk five steps before lying down in total exhaustion. He wouldn't eat or drink much of anything and he was so pale.

In my extreme exhaustion I kept hoping he'd get better so we wouldn't have to take him to the doctor. The thought of making any effort to leave the house was almost unbearable. After three days of things getting worse, it was obvious he needed medical help. My husband made an appointment for the following day. A Saturday.

Our family doctor took one look at my little boy and knew it was something serious. By this time his stomach was distended from an enlarged liver and spleen. We were told to go home, pack some clothes and head to the Children's Hospital. They would most certainly admit him.

I called my mom as I packed a bag for my son and husband, who would be the one staying overnight as I had a new baby to care for. I was in tears. Scared about what could possibly be wrong and feeling guilty that I hadn't taken him to the doctor sooner. My mom told me she would come right away. Moms are wonderful.

We arrived at the ER in the late afternoon. Within minutes we were in the back and nurses were putting in an iv, taking blood, taking x-rays, putting in a catheter for a urine sample. My boy who had rarely been sick was suddenly bombarded by test after test. It was heart breaking. My husband and I would make eye contact and tear up. We felt so helpless. At least three different people asked me the same questions over and over. I wanted to scream at them that I'd already answered their questions. But I had to stay calm for everyone else.

I had a few minutes of peace and quiet in the family lounge so I could nurse my baby. I don't remember much about what I was thinking or feeling then. I likely just tried to focus on feeding my younger son and regaining my sanity a bit. When I came out they were moving us to a private room while they waited for results. My husband and I took turns sitting with our boy, who kept asking for one or the other of us. He mostly wanted his Daddy at this point if I remember correctly. We didn't talk much. We just tried to be cheerful for our son and each other.

We had only been at the hospital for a couple of hours when the ER doctor and a social worker came in to tell us the results. I was sitting on the bed and my husband was on the chair across the room holding the baby. When I saw their faces I felt a nameless dread. My mind went so very quiet. I was not prepared for the word Leukemia. It dropped like a bomb in my brain. A bomb with a delayed detonation. I looked at my husband and I saw the same devastation in his eyes that I felt. Our world became unfamiliar, unknown , and terrifying.

Until that moment I had assumed that it was some kind pf infection, maybe pneumonia. I really had no idea. I figured he'd be in the hospital for a week or so, put on medication, and it would clear up in a month. Maybe I knew it was more serious and I was just trying to protect myself. I'll never know.

My mom and sister arrived just after they left. I dissolved into tears in my mothers arms as I had to tell her the initial diagnosis. My heart shattered. But I had to put it back together again for my children and my husband and for myself.

While we waited for the Oncologist who was on call to come talk to us many thoughts went through my mind. The most prominent was, "Is my little boy going to die?" I knew so little about Leukemia at this point. Only what I had seen in movies really which were the more dramatic stories of people with terminal cancer. I had visions of him losing his hair, losing weight, throwing up from the chemo. My very vivid imagination was going full speed.

The Oncologist was very kind, but I have to be honest, I could hardly understand a word he said due to his accent and my brain going into survival mode. Almost all of my energy was being used to help me stay calm. He seemed surprised at how well we were taking things. He had no idea how much effort it took. I remember very little of that conversation. Just that he explained that they would need to do more tests.

We were eventually moved to the Oncology unit. They hooked my son up to fluids as he was dehydrated and I don't know what else. Again, I don't remember much. All I remember is that it got late, my sister had to drive home (my mom was staying with me that night), and I had to leave my precious boy. I sang him the songs I'd always sing him at bedtime, hugged my husband. We finally had a moment alone to cry a little bit and just hold each other. I felt so guilty leaving them. Liam was okay when I left, but I had to go back into the room to ask Jonathan where my keys were. He started crying for me as I left again. My heart threatened to shatter all over again. 

Exhaustion, fear, anger even, guilt, and pure grief. That's what I felt as I finally sat in my bed putting my baby to sleep. I prayed in total anguish. Asking why this was happening to my boy, to us. I unleashed all of my emotions in a quiet wave so as not to disturb my newborn. Then I lay down and somehow slept.

 

Posted on December 7, 2015 .