He was such a beautiful young child, but something was off from almost the beginning. I could sensce his neediness and yet never satisfy it….
Two years ago today, my son underwent an 8 hour surgery that saved his life, for now.
I would like to tell you what that day was like….We knew he had a brain tumor on memorial day 1013, that day it was officially diagnosed after a trip to the emergency room.
I insisted on an imaging of his head, because we already figured out it was a brain tumor. After a bit of conversation, the Dr. Liner at the CHOP Voorhees ER Agreed. We went back for the cat scan. It only took a few minutes. I was sitting in my sons room when I saw the Dr. looking at some images, as soon as she walked away coming towards us, I saw the screen. I knew instantly that what I was looking at was Johns tumor. IT WAS MASSIVE.
Dr. Liner came to grab me from the room with John and pulled me and my best friend from the room to talk. I already knew what it was and instantly felt out of control. So I did what anyone else would do and asked the Dr. to pray with us.
I first called my husband, who was at a softball tournament at mercer county park. My daughter was with a dear friend that I trust implicitly. I call her the child whisperer. John was taken by ambulance to CHOP main in Philly….. We got there and I made a flurry of phone calls. Jimmy came right away, as did Luke, and Mark a pastor who is a wonderful friend.
We stayed awake together for 36 hours. While we waited for scans and determinations from the surgeon as to what he could do as far as removing the tumor. At this point our son was on heavy pain killers to help with the agony of hydrocephalus associated with his tumor. essentially his brain tumor was so big it was blocking the fluid from coming out of his skull.
We waited through the scans, and waited for the surgeon to say he could try to take the tumor out. It was 10 inches by 10 inches, over half the size of John’s head. It was massive. The surgeon went through the MRI with me and showed me how intricate the blood vessels were that was feeding this tumor. It was scary. He was not entirely optimistic. Dr. Storm said he had a 50/50 chance of surviving the surgery, IF he was able to get it out at all. He said He might open up his skull and it might be too extensive to remove…….after that second day in the PICU, we were delt this scary blow. Our baby, our Son, our little child was slated for surgery the next morning.
We spent the night completely awake. I must have cried for hours over his sleeping body. I must have bargained with God a hundred times. I must say that I involuntarily cried at points throughout the night with the fear that this would be the last time I would hold my son in my arms. That the next morning I could be kissing a dead child’s head. It was such a hard night. We had been up for 36 hours straight. It was so hard to describe my Faith In God at that point, that I began to dig really deep and find that part of me that believes that God is Good and that He means for the best. I think I was so in shock that I nothing else to draw from.
The next morning, he was taken from us. We cried as his bed left the room. We did not know if we would ever see him alive again. It was life shattering. I will never forget the image burned into my mind of my son going down the hall, and the impression on my memory of trying to say to myself, you have said as many goodbyes as you could.
I want to leave you here, I think its important to let you into the world of what uncertainty looks like and let you experience the magnitude of emotions that we all felt that day. It was horrific. And, traumatic. And, life impacting……
That’s what I have to share for now…..Faith