Thursday, August 26, 2010

Daniel's Tumor Removal Surgery

While staying at the Ronald McDonald house, we met a teenage boy - Armando had come all the way from Guatemala. He was staying at the Ronald McDonald house while recovering and rehabilitating from spinal cord tumor surgery. Dr. Kothbauer shared with us many details of his illness and his surgery. A missionary had befriended him in Guatemala - Armando was very sick. He was losing his ability to walk and no one knew why. The missionary had taken up Armando's cause and eventually discovered Beth Israel Hospital. By the time Armando was flown to New York, he could no longer walk. The tumor had grown too large and had paralysed him. Dr. Kothbauer removed his tumor, but even after surgery, Armando wasn't regaining his ability to walk. Dr. Kothbauer told us that spinal cord tumors eventually will paralyze if left unchecked, and once this happens the odds go way down in terms of the patient's ability to walk again. Although Armando spoke almost no English, we befriended him as best as we could. I felt a strong attachment to him. He was a sweet, sweet boy, always smiling and giving me the thumbs-up sign. And he deeply touched my heart (see photo above).

The day before surgery, Daniel had a pre-op MRI. The MRI pictures would be like a map, guiding Dr. Kothbauer during surgery. He would be using a patented instrument invented by Fred Epstein. This instrument, called a Cavitron, looks more like a dental device. It literally pulverizes the tumor, one tiny piece at a time, and then sucks it out of the spinal cord. Since Daniel's tumor was very large, the tumor removal process would take many hours. Someone would be monitoring Daniel's nerve function constantly, through a high-tech machine that measures nerve impulses. The machine detects any dips or changes in nerve function. A change would cause the machine to beep like an alarm - a warning that the surgeon is getting too close to healthy nerve tissue. Once the alarm goes off, the surgeon must stop the process of removing the tumor in that particular location.

We were required to fill out and sign a great deal of paper work and a consent form. Dr. Kothbauer said there was a 10% chance Daniel would be paralyzed during surgery, and an even higher chance he would lose at least some motor coordination. In spite of all the disclosures and warnings he was obligated to give, Dr. Kothbauer exuded confidence and calm.

After the MRI and our appointment with Dr. Kothbauer, we left the hospital and explored the upper east side some more. I remember we walked past a pet shop, with a litter of baby pug puppies in the shop window. Daniel was enthralled. He sat in his stroller and watched them for a long time, smiling from ear to ear. We would be checking Daniel into the hospital at 7:00 am the next morning, so we put Daniel into bed early.

On the morning of Thursday, June 20, 2002, we arrived at the hospital for Daniel's surgery. We dressed him in his hospital gown, met some nurses and the anesthiologist, and then Dr. Kothbauer walked in. After exchanging pleasantries, he asked us, "Are you ready for this?" I replied, "Yes, I think so. Are YOU?" He laughed, and said, "I am MORE than ready." Alright, then. Daniel was calm and peaceful. No crying or fear. He smiled at us and told us he was going to be just fine! He may have felt fine, but I,on the other hand, didn't know for sure if I was going to be.

During the first few hours of waiting, I kept my composure fairly well. But as the hours dragged on, my mind began to explore every possible scenario. Doubt started creeping in - especially doubt that his tumor was not cancerous. About 3 or 4 hours into the surgery, I began silently talking myself in and then out of every worst-case scenario I could think of. I told Wes that I needed some fresh air. We walked right across the street to a park overlooking the East River. I told Wes how I was feeling - about my fears and doubts. Being my rock and the voice of reason, Wes reminded me that God had brought us all the way to this point, and He was in absolute control. He reminded me that God is good - He wouldn't lead us here, only to pull a bait-and-switch. We sat on a park bench and prayed for quite a while, before making our way back to the hospital waiting area.

We waited and waited. The surgery took about 8 hours. After what seemed an eternity, we FINALLY saw Dr. Kothbauer walk into the waiting area. He sat down in front of us, still in his OR garb, and said these words: "The surgery went very well. I was able to remove a great deal of the tumor - more than I anticipated - about 90% of his tumor is now gone. I would have removed even more, but the electrical monitors went off at one point, letting me know I was getting too close to his nerves." I asked him about the pathology - he said that a flash pathology revealed just what he had suspected. The tumor was not a PNET, but another kind, a slow-growing variety. However, a detailed pathology would eventually provide the final verdict. He told us that Daniel had already started to wake up. He was wriggling his fingers and his toes on command. When Dr. Kothbauer left the room, we stood up and hugged each other and cried in one another's arms for several minutes.

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