I really am still alive. The Davis household has just been busy the last few days! I am going to try to get posts caught up tonight and tomorrow. Thanks for understanding.
47/365 days of blogging
You can read part 1 of the story here.
You can read part 2 of the story here.
You can read part 3 of the story here.
I know in the bottom of my heart that God was teaching me a lesson that I was not getting. I was not angry with God at this point, or so I thought, but I was disappointed. Disappointed not in God but in myself. Somehow I figured this had to do with my faith not being strong enough, or not having enough faith.
So I began this journey again. A journey that quickly became a burden I was not prepared for, but knew it my heart it had to take this path, for what ever reason I was not aware of but I was willing to accept that it was God’s will and to play out his plan in our lives as HE saw fit.
Again the next few weeks were filled with tests and surgeries to replace the Hickman catheter in her chest to receive chemo and blood through. They also tried to perform a debreeing of the tumor site but weren’t able to get much. The scan showed that the tumor was double in the size it was the first time they found it when she was 5 weeks old. Her oncologist contacted a doctor in Pittsburg, PA a world renown surgeon to see if he could help us surgically. He studied her scans and discovered that the tumor was not only larger than before, it was also being fed by the carotid artery. This would make surgery near impossible but he was willing to give it a shot if we were willing to take the risk. Two days later we were on the road to PA.
Her first appointment there was to see if they could clamp the carotid artery to see if one in the right side of her neck could sustain her blood supply to the brain. When they did this, she coded on the operating table. They tried 2 more times and the same result. It was not going to be able to be removed. The next plan was to do surgery and remove as much of it as they could, and then they were going to put “radiation beads” in her oral cavity that were time released and they would release a treatment from the beads every 6 days. The surgery was supposed to last 12 hours and the nurse promised to give me an update every hour on the hour. They were amazing at keeping me updated throughout her surgery. After 10 hours the nurse came out and told me they were waiting on the pathologist to test the tissue. It could take up to 4 hours for this. I said ok what are they doing to her while they are waiting. She said “well they have a sterile drape over her face (which was opened up like a book) and Dr. Janeka is resting.” I said “resting? like taking a nap?” She replied “Do you really want him on his feet for 14 or so hours?” I thought she had a good point so I thought him lying down was a good thing. The surgery actually lasted 17 hours. At the end of the surgery, they implanted something only known to me as “radiation beads.” They are little pearl like pellets, that are time released and inject radiation into where the tumor was. When I saw her after surgery she had her head all wrapped up and the left side of her face was drooping. I knew they would be cutting through all the nerves in her face, but I guess I thought that when they closed the incision, that it would be as good as new. The “droopiness” went away after about 8 weeks.
Upon returning home to Kansas City, we began a course of radiation that lasted 6 weeks. We went to St. Luke Hospital everyday Monday through Friday for treatments. They explained to me that because radiation kills whatever tissue that it touches that as she grew she would most likely have to experience facial reconstruction surgeries. Her cheek bone would have to be removed and bone from her hip would have to replace it. They said it would not even be noticeable.
So once again, my daughter was tumor free. The doctors were sure they had gotten it all this time. They were confidant that there was no more battles ahead of us. Then they followed that statement up with if it ever grew back, we would have very little chance of winning the fight again. We spent the next three years praising God for healing her once again.
For the first 6 months we returned to the hospital monthly for CT scans. AFter that we went every 3 months for the next year. The third year we only had to do 2 scans, only every 6 months. The 2nd scan was performed in December of 1992. Now I usually didn’t hear any sort of report from the doctors after a routine scan. So after the 28th of December, when I didn’t hear anything, I assumed we were still in the clear, very happy about being able to go to a once a year scan routine for scans. On the 23rd of January, 1993, my birthday, I heard a knock on the door of my apartment. When I opened the door, I saw Virginia and Cathy, the two nurses that had become my friends and had remained a support to me even when Micah wasn’t sick. I thought it was sweet that they would drive 2 hours just to visit me on my birthday. I thought they were there for my birthday, because that was the kinda gals they were. We squealed and hugged and laughed and cried for a few minutes. Then Virginia said “Jeannie come sit down for a second, we need to talk.” My mouth dropped to the floor and I said “It’s back isn’t it?”