It was the winter of 2011 and my two-year-old daughter, Ella, was having some difficulties. She had hit many of her early milestones but had stopped progressing and was starting to regress. Things that had been easy for her she was no longer doing. She stopped running and would not walk if she was on sloped or uneven ground. She was afraid to walk or climb.
I thought she was being stubborn. My wife was worried that something might be wrong with her. We took Ella to the pediatrician. The doctor didn’t see anything medically wrong. She suggested we visit a physical therapist. She thought that maybe with some work and sometimes she would catch up and start jumping and running like other kids her age.
Ella started physical therapy. She was working hard but still slipping. It seemed like something else was still wrong. We decided to keep looking. Our family has a history of poor eyesight. We thought that maybe she was so hesitant and off balance because she couldn’t see.
In April, of 2012 We made an appointment and took Ella to the eye doctor. Her eyesight was fine. He continued his exam and dilated her eyes. It was then he found something.The optic nerve was what can only be described as bulging. While it was possible this was just a physical abnormality, more likely it was because the pressure in her head was elevated.
The eye doctor told us to take Ella to a nearby emergency room. He called ahead and scheduled a CT for us. We arrived and they hurried Ella into the CT. The test was quick and we waited for the results.
A little while later our pediatrician walked in. We were surprised to see her, and the look on her face let us know something was seriously wrong. She told us the CT showed that our two-year-old daughter had a golf ball size tumor on her brain.
My wife and I took the news hard. We both cried for a bit, and then I left. I am not proud of this, but I basically abandoned my wife. Looking back I should have stayed, my wife needed me, but I needed to get out of there. I made up an excuse about needing to tell our families and left. I just had to get out of there. I couldn’t breathe. I couldn’t think. I couldn’t handle this.
I ducked into a room and cried. I just couldn’t process what I had just been told. I did call our families, let them know what was going on, breaking down each time I had to share the diagnosis. When I finished I returned to the room. My wife was holding herself together, much better than I was.
For a second time I left. I was still unable to handle what was going on. I made an excuse about needing to go home to gather things we were going to need. To be honest, I just wanted to get away.
I cried the entire way home. My mother and sister met me at my house and helped me gather a few things to take to the hospital. I don’t remember what I packed. I would later find I had forgotten many important things.
On the way back I cried some more. Then a strange thing happened. I came to a bit of peace. I realized I had to be strong for both my wife and for Ella and somehow I was now ready to be. I entered the hospital, went upstairs and found my wife talking with the doctor.
On the screen next to them was the scan. Everything we have been looking for the last few months was on that screen. All of the missed milestones, what I thought was stubbornness, the fear of things she used to love. A brain tumor, the size of a golf ball was sitting on the back of her brain. It was all there on the screen, and if we didn’t do something about it, it would kill her.
That night the doctors scheduled Ella for a small surgery to put a drain in to help lower the pressure on her brain. This was a temporary measure to help while we were waiting for an MRI and to schedule the surgery to remove the tumor.
The next morning we met with our pediatrician and she suggested we move Ella to a different hospital. While our local hospital was capable of the type of surgery Ella needed, there was a bigger and better-equipped children’s hospital not far from us. My wife and I talked it over and decided that Ella was headed to C.S. Motts Children’s Hospital at the University of Michigan.
We arrived by ambulance and prepped her for an MRI. We didn’t know yet what type of tumor Ella had, or if it was cancer. The MRI would answer these questions for us this as well as tell us if it could be removed.