"D" Day

In the days leading up to Daniel's Oct. 24th surgery, Dr. Wehby discussed her strategy at length with us. A team of surgeons -basically all the best and brightest neurosurgeons she could assemble from Legacy Emanuel - would be assisting her in the operating room. On Oct. 24th, we brought Daniel to the OR at about 7:30 am. We stayed with Daniel until after he'd been put to sleep, then we were told to wait in a waiting area. We walked into the waiting room, and already dozens and dozens of people were there. The hospital moved us all to a larger area. Eventually, we had a total of about 60 people waiting with us! And that didn't include anybody in my family, as my own mother, coincidentally, was scheduled for a hysterectomy that same day.

To be honest, I was in no mood to talk with people, and just wanted to sit by myself and think. But having all those people there helped to distract my mind from obsessing over Daniel. Several of those who had come brought food, so everyone had something to eat, but I couldn't eat anything. Periodically, a nurse from the operating room would come out and give us updates. These were essentially devoid of any real information. Every update consisted of words like these, "Everything is going fine. They just started cutting... or they opened up his spinal cord and are working on the tumor, etc..." - what we really wanted to know was not revealed to us at all. The surgery dragged on for a total of 7 hours. Towards the end, the OR nurse came out again, and she had tears in her eyes. She said that all the people here supporting us made her cry. But I just knew her tears had something to do with the goings on in that operating room.

Finally, we were called to follow the nurse into another conference area. It was very strange walking out of a room full of people, all waiting to hear the news. I tried to maintain composure but found it very difficult to keep from shaking. I was so nervous and just had a strong feeling the news wasn't going to be good. Dr. Wehby was there to talk with us. She started giving us a bunch of technical information about what the tumor looked like, etc. She even showed us a few pictures of it. Then she said, "The tumor is NOT an ependymoma, as I had hoped. The tumor is a glioma, grade 4, meaning it's highly aggressive. A tumor like that in the spinal cord is inoperable, and fatal. I'm afraid there is nothing I can do for him." We asked her how much time he had. She said about 3 or 4 months, maybe. Then I did something that really surprises me, when I look back on it. Instead of breaking down, which was what I was "supposed" to do, I started telling her about our eternal hope founded upon our relationship with Jesus Christ. I remember saying, "Dr. Wehby, we are all going to die, one way or another. This earth is not our home. We are on a journey and heaven is our true home. God is good all the time. If he wants to take Daniel home to be with Him, then we are at peace with that. I know we will see him again someday." She was a bit shaken - but she said, "I'm glad that you have peace and I certainly hope that you are right." I remember that Wes and I were fairly calm, upon hearing the news. Although the news was beyond devastating, God had given us a peace and a strength for such a time as this. Then she went on to explain how she had removed the laminae from Daniel's backbones (the laminae are the part of the backbones facing the back). The spinal cord was much larger than normal because of the tumor, and was pushing up against Daniel's backbone. This was the cause of Daniel's intense pain. So without the laminae the spinal cord had nothing to push up against. A flexible "patch" was put in place of where the laminae used to be.

Going back into the waiting area to face the room full of friends and family was so very difficult. We stood there and had to break the news that Daniel - grandchild, nephew, cousin, friend to the people in that room - was given only a few months to live. Wes's sister burst into tears. Most of the people just sat there dumbfounded. We could not stay and talk with anybody because they were bringing Daniel out of surgery and we had to be there with him. I heard that the people from the waiting room remained for quite a while and prayed together.

Daniel was brought immediately to intensive care. Wes and I sat there together with Daniel in that small room. staring at our precious little boy, unable to process through what we'd been told. He was in so much pain, and a catheter they'd put in during surgery was hurting him really bad. The nurse caring for Daniel was named Elliott. He was fully aware of Daniel's prognosis and expressed a great deal of compassion for us. He was in Daniel's room in ICU almost his entire shift, trying to help in any way he could. He tried so hard to make Daniel comfortable and pain free, although it was a very long night for us all. He became Daniel's friend over that day and night, and when Daniel was moved into a regular room, Elliott still came by to visit, and even brought him a gift.

The next few days were extraordinarily difficult for us emotionally. But it's amazing how hope can survive even the grimmest of circumstances. And somehow despite all the bad news, hope started slowly making its way to the surface of our minds and hearts.