We had never heard of neuroblastoma when Ben was first diagnosed in 2004. Of course we’d heard of kids gettingÂ leukemia, which is horrifying enough, but children getting any other sort of cancer was a ridiculous concept to us.
The first opportunity I had to go home after Ben’s initial diagnosis I ran straight to the computer. I started researching. And what I found was horrifying. Neuroblastoma was rare. Neuroblastoma had a very low survival rate. Most children do not survive a stage 4 diagnosis, which is what our Ben had.
I had to meet a survivor. I had to meet someone who had beaten the disease. In my search to find someone, I had to start with who was currently in the hospital. There was one little girl who had relapsed and was back in treatment, and two little girls who were about a month ahead of Ben in their treatment protocol.
During my nights of wandering the halls I met up with Michelle. She looked very familiar to me but I just couldn’t place her. Through our chats I learned that she was approximately the same age as me and that her daughter, Sophia, had been in treatment for neuroblastoma for just a couple of months. Sophia was just a year old.
We were outpatient after a round of chemo when we ran into Michelle and Sophia at the clinic. Ben was probably getting a blood transfusion. Sophia was sitting in her stroller. One leg was hanging over the side and she was bouncing it up and down. A smile spread from one side of her face to the other as she looked at me. I could see her little tubies peeking out from under her shirt. She was so tiny. And this horrible beast had its hooks in her.
I watched her beautiful eyes as her mother described what was next in Sophia’s treatment plan. She was to have surgery in just a few days. We were due to come in the following week for Ben’s next round of chemo. I told Michelle that I would look them up when we were inpatient. We exchanged well-wishes and said our goodbyes.
We went inpatient on a Monday. It would take us about an hour to get settled each time we “checked in” to Children’s. As soon as we were settled a nurse came in to hook Ben up to his chemo. I asked his nurse if Sophia had made it on to the floor yet, since I knew she’d had surgery a few days before and was probably still under her surgeon’s care. The nurse looked me right in the eyes and I knew. I knew what she was going to say before she said it. And as the words came out of her mouth my ears tried to shut them out. No. No. No.
Sophia was gone. The beautiful little baby that had bounced her leg over the edge of her stroller had died.
I woke up to rain the day of Sophia’s funeral. Ben was still inpatient. My mom came to sit with him and Madeline (who was just a couple of months old) as I went to the funeral. When I walked into the service I recognized several people and realized that Michelle and I were related in a crazy, roundabout way. My father’s wife was previously married to a man who was Michelle’s uncle (trying to follow my family tree is a hopeless endeavor, I imagine that I will have my own documentary on the History Channel some day). Michelle and I finally made the connection at the same time – I was the scrawny freckle-faced girl she knew so many years ago. It might have been a fun discovery if it wasn’t under such horrific circumstances.
It was a Catholic service. I listened as the Father said things like “I’m not here to tell you why children suffer and die”, I very nearly raised my hand right in the middle of the service because I wanted to know the answer. I was not satisfied with statements like “there’s evil in the world and that’s why children die”. To me, that’s not an answer. That’s baloney.
At the end of the service they wheeled out Sophia’s tiny casket. Michelle walked behind it. Right as they were leaving the sanctuary, Michelle reached out and rubbed the top of the casket – right where Sophia’s head would have been. I don’t know if anyone else caught that since we were all getting up to follow behind. I guess I saw that last gesture as something a mother would do. A sign of affection.Â A tousle of her child’s head.Â A child that should be by her mother’s side instead of lying in a casket.
I traveled back to the hospital. Rain pelted my windshield. Thoughts of my son fighting for his life suddenly marred by the harsh reality that this disease has no problem whatsoever in taking his life. And there was not a damn thing I could do about that. Just sit by and watch it happen. Try to soothe whenever I could but ultimately knowing that I had absolutely no control.
Michelle called me later that week and told me what had happened. Sophia died right after surgery. She developed pancreatitis after a successful surgery and died in her mother’s arms. Michelle watched as the life left her baby and her little body grew cold. Michelle said it happened so quickly.
This event shattered my heart. Sophia’s death shook me to the core. And each little friend that we lost along the way over the next few years just hammered it home that cancer doesn’t care. It just doesn’t. It exists solely to rip us apart. To destroy us. And even though we kicked it out once, its back. And it just doesn’t care that I had plans for my son. For him to grow up. Grow old, even. Be healthy. Happy. A good big brother. A wonderful son.
It’s National Childhood Cancer Awareness month. Wear a Gold Ribbon to support Ben. And Sophia. And all the other little kiddos who have fought for their lives.