living in a nightmare

I am at a loss for the words to explain what is happening with our son. I will try. As I last posted, Ian returned to school. He had a plan in place for what to do when he had any symptoms- headaches, dizziness, loss of focus, irritability, etc. When he was first cleared to return to full days of school, his doctors also cleared him for fall baseball. We cautiously enrolled him, and we prepared the coach that Ian would not be able to play his position as catcher.

Things seemed to be going okay for a little while. Then, the headaches returned. They seemed to get worse each day. We pulled Ian from baseball again and contacted his doctors.

I was at work on a Tuesday when Ian's school nurse called. He passed out in the stairwell. I called my cousin Judy, and she picked Ian up from school, and we headed straight for Children's Hospital. Ian cried the entire car ride because the pain was so intense.

This was not the first time we made the trip to Children's for what we assumed were concussion-related symptoms. Usually, Ian was hooked up to an IV and was given a "migraine cocktail." We'd stay several hours, and then he'd be discharged. That's what I was expecting during this visit as well.

We were seen by a doctor we hadn't previously seen. Instead of jumping right into the meds, she ordered a CT scan and an EKG. The CT was over quickly. I remember feeling relief that Ian would finally be able to get some medication for his pain. I hated seeing my little boy hurting.

The doctor returned with another doctor, a woman who introduced herself as Dr. Tyler-Kabara, a brain surgeon. I honestly cannot remember my exact thoughts at that moment. All I can remember was the look of terror on Ian's face. (Later, I would become angry that she introduced herself in such a way in front of my son.) She explained that a "shadow" was seen on the CT, and since she didn't know what it was, she wanted to order an MRI. We agreed. I tried to console Ian as best I could. I didn't want him to see that I was scared too. I left Ian with Judy and went into the hallway where I sobbed.

I called JC and my parents. I was terrified. They were terrified. JC wanted to meet me at the hospital, so we arranged for Jake to go to a friend's house for the night.

The nurse returned sometime later to sedate Ian and take him back to MRI. I was allowed to go with him. I sat in the corner of the cold room in a rocking chair watching as my baby had images taken of his brain. I prayed. I cried. I wanted so much to wake up and realize it was all just a horrible nightmare.

When the "brain surgeon" returned with Ian's results, she confirmed our fear. Ian had a tumor in his left frontal lobe. She started to explain how it was in the white matter of his brain, and I completely tuned her out. Doing the very best we could to fight back tears, we held onto Ian and nodded as the doctor spoke.

Ian was sent home with instructions to return in a few days for further testing.

The next day, we received a call from the emergency room doctor who informed us that a problem was also found in Ian's EKG. She apologized that they didn't tell us the night before, and then she gave us the name of the pediatric cardiologist Ian needed to see. At that point, we became almost numb.

Appointments were made. Tests were scheduled. We are still in a test cycle with the cardiologist who continues to find a new problem after every test. It's a mess.

Days and weeks have passed, and we know that Ian has a brain tumor. We hoped it would end up being scar tissue, but the neurosurgeons ruled that out. They also ruled out MS after an MRI of the spine show end no lesions in the white matter of the spine.

His neurosurgeon wants to wait and retest in 3 months rather than remove it now. If we remove it now, it will change his personality. So, we wait. Meanwhile, my sweet little boy has begun to ask a lot of questions. These are the most difficult questions to hear. He is afraid. We are afraid. Please keep him in your prayers.