Childhood Cancer

Childhood Brain and Spinal Cord Tumors

From the CNS to the body

The brain and spinal cord, which make up the CNS, communicate with the rest of the body via nerves. Nerves are thin strings of tough fiber that extend throughout the body. The brainstem and spinal cord branch off into many nerves that carry information to and from every part of the body. Together, these nerves are known as the peripheral nervous system.

The peripheral nervous system carries commands from the CNS to various body parts and returns information gathered from your senses. For example, nerves close to the skin’s surface are sensitive to touch and tell the brain if they notice a crawling sensation. In response, your brain may trigger commands that cause you to absentmindedly brush a hand over the affected area or scratch it.

Other nerves transmit information to and from the body’s internal organs, including the heart, stomach, and intestines. These nerves and the parts of the spinal cord and brain that control them are called the visceral or autonomic nervous system.

Most of the time, the workings of the peripheral, autonomic, and central nervous systems go completely unnoticed. The majority of their interconnected activities concern basic physical functions: breathing, digesting food, producing hormones, pumping blood, and the like. Although it’s possible to stop and purposefully make yourself aware of some of these processes, most people pay no attention as long as everything is working well. Brain and spinal cord tumors disrupt the normal, smooth functioning of these nervous systems.

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At the hospital a tall dark-haired man met us in his office with a firm handshake. His kind brown eyes looked into mine. They held compassion and looked straight into me. They were willing eyes that held the horizon of the unknown. He was to be our neurosurgeon.

He showed us the scans from the MRI. It was like looking at a large negative. It is a picture of a slice from the body—as if you put a potato or an egg in a slicer and pulled out one slice to examine it. A foreign, alien feeling gripped me. From nothing wrong to brain tumor. This should not be happening. This was not normal. This is something that happens in someone else’s life. Slow down. I wanted to say. Show me. Point with your finger to where it is. Tell me what is supposed to be in this picture and what is not?

That lemon-sized spot. That’s not supposed to be there? Well, what is it? He explained that the best procedure would be to perform a craniotomy and surgically remove the tumor, find out what kind it was, and proceed from there. In just a few hours we went from suntanned vacationers to scared parents giving permission for someone to surgically explore our child’s brain.

I wanted to slip away. I wanted to hold the picture in my hands and study it. I wanted to zoom in on the unwanted mass and understand why it was there. The mass, what does it mean? She’s that sick. She’s sitting in my lap. She can walk. She can smile. She looks normal. Can an intruder hide that well? The scans are removed. I didn’t hold them. She’s in my lap. I’m supposed to be strong.

We left the office and went to Admitting. It takes a long time to process the papers. Another opinion, yes, another opinion would be good. Yes, we probably should ask for a second opinion. We were at the best facility, weren’t we? We were with the best doctors. It was Friday night. Who would give us a second opinion tonight? She was being admitted. Should we wait? Could we wait? We risked a stroke, death, physical impairment.

I have learned since that the damage done in a rush surgery or by inexperienced hands results in handicaps that might have been prevented. I was lucky not to know this.

At 4:30 p.m. a nurse called the waiting room. She was out of surgery and the neurosurgeon would be coming to talk with us. The man with the silent eyes approached. I rose. Knowing that what he said would change me. If she had survived the surgery, what would her life be like? If she had not survived, how would I?

He approached the waiting room with a lightness in his step. Coming straight to the point he said, “Your daughter had an astrocytoma. Her surgery was longer than normal because the tumor was embedded in her brainstem. There is the possibility that some small part of the tumor is still remaining. This will be followed by future CT scans and MRIs.”

I was seized by an incredible urgency to see her face. I needed to see her. To prove to myself that all of this had been real. And to prove she was still here. She was in recovery. I stood over her and reached for her hand. Her head was turned to one side and I tried to find her eyes. The room was cold and silent except for the beeps of the monitors. She looked small in the huge bed. There was a bandage around her head. It smelled like cold. It felt like cold. It was a place you would run from if you could. I stood there knowing she might not be okay. She might not ever run or laugh or play. This is the moment for prayers. And you hope.

She opened her eyes as if she came from heaven. Her eyes lighting a cathedral with a single candle.