After a failed attempt of trying to administer radiation to Jackie at the Auburn Radiation Oncology Center, our neurosurgeon pediatrician advised surgery for Jackie to insert a shunt in her chest. The plan was to use the shunt to go directly into her bloodstream with the anesthesia in order to put her to sleep. Once asleep they would administer the radiation and then wake her up. My dad was a doctor for 40 years and one thing he taught me was that there is always a risk whenever someone is put to sleep for surgery. We did not like the idea of doing this procedure five times a week for a number of weeks. But we were told that it was the only shot we had at extending Jackie's life, even if it was just for a season.
Carrie and I prayed hard about this decision. We decided to take the next step in the medical model process which was to insert the shunt into Jackie's chest. We trusted God would show us what to do after the surgery. The surgery would be risky because we didn't know how much the tumor had affected her lungs and other major organs. At the encouragement of our doctor, we decided to proceed with the minor surgery. Jackie would need to fast for a 24-hour period prior to the surgery. This was extremely difficult for her especially since she was on steroids at the time to shrink her tumor. Steroids cause a person to eat more than normal and now she couldn't eat at all. We could see and feel her pain, hunger pangs which led to tears. She couldn't understand why we wouldn't give her any food. Finally, it was time. The nurses prepped her and wheeled her off to surgery. We prayed believing that God was going to get her through the surgery successful. An hour later the the doctor came to us and told us that the surgery had been successful. We were thrilled!
We met her in the recovery room. Carrie and I were talking to her and she was laughing when all of sudden she she stopped breathing, her eyes rolled to the back of her head and she began to turn blue. The monitor started to ring as the nurses and doctors rushed to her side. It was an emergency, a code blue. We were instructed to leave the room. Carrie ran out of the recovery room into the hallway. I told the doctors I wasn't leaving my baby and I stayed right by her side but giving the doctors and nurses room to work on her. Jackie had stopped breathing. It took the doctors about 30 seconds to get her breathing again. When she came to she looked scared and disoriented and started to cry. I hugged her and told her it was going to be okay. After awhile she stopped crying and I ran out to the hallway to get Carrie. She was curled up in a fetal position crying her eyes out. She thought Jackie had died. She asked, "Is Jackie dead? I didn't think she would go this way." I assured her that Jackie was fine. I said, "She's breathing and and doing well and wants to see you!" Carrie ran back into the recovery room and smothered Jackie with hugs and kisses.
We almost lost her that day. Neither of us were prepared for the fact that Jackie could go at any time. Our neurosurgeon pediatrician came up to us in the recovery room after he heard what happened. He told us that Jackie's body was already beginning to feel the affect of the tumor and that her lungs were already compromised.
Quality of Life vs. Quantity of Life
At that point we had to decide what was more important - quality of life or quantity of life? If we decided to put her to sleep each day, administer radiation and then wake her up, there was a good chance she would die in the process. Carrie and I talked and prayed about it. We were told that 90% of kids with terminal cancer end up dying in a hospital hooked up to tubes. We didn't want Jackie to die that way and we knew Jackie didn't want to die that way. We knew then that Jackie probably didn't have much time left. We wanted her to enjoy whatever time she had left.
At that point the neurosurgeon suggested that we consider hospice care for Jackie. We decided we would take her home the next day. She had to spend one more night in the hospital so they could monitor her to make sure she was okay after her code blue incident. Carrie spent the night with her at the hospital and literally slept in her bed with her. We decided to take Jackie home the next day. Joshua and Jessica came with me to the hospital. It was a good day because we were going to spring Jackie from the hospital! On the way home we stopped at a mall and bought Jackie a stuffed animal. We ate dinner at a local restaurant at the mall. While eating Jackie looked deep into my eyes and put her hand around my neck and pulled my face close to hers and basically through her eyes said, "Thank you daddy for freeing me from the hospital!" We took Jackie home that night. She never had to return to the hospital.