Nashville vs. Memphis or Aggressive vs. Conservative

When we arrived at the pediatric neurosurgeons office the following week at Vanderbilt Children's Hospital in Nashville, we were still holding to the belief that there was a flaw in the CT scan or that there was nothing seriously wrong because we left Kansas with a list of possibilities ranging from a closed cleft pallet to malignant cancer. If it was a closed cleft pallet, then there would be no need for surgery, radiation, or chemotherapy. So, we walked into the doctor's office with a cautious confidence that this mass was nothing serious and that we would be going home to miraculous great news; however, that was not to be the Father's design. Immediately upon entering the room, the doctor told us that our son had a type of benign tumor called a Craniopharyngioma. In English, that means that there is a tumor most likely connected to the pituitary stalk of our son's brain, which can cause a variety of nasty side-effects if left untreated such as: blindness, vomiting, nausea, dehydration, uncontrollable appetite, stunted growth, behavior issues, hormone deficiencies, and ultimately death. If that was not scary enough, the doctor strongly suggested a complete resection of the tumor within the next two weeks. At that time our minds were blown, we went from hoping for a closed cleft pallet to a benign tumor within the brain and surgery on the horizon. During this visit we were also informed that our son would be on complete hormone regulation for the rest of his life and that he would have a disorder called Diabetic Insipidus, which is another nightmarish term meaning our son would have extreme difficulty regulating the water and salt intake and outtake of his body. To clarify, a complete resection means taking out the entire pituitary gland of the brain along with the tumor, which is why there would be a diagnosis of Diabetic Insipidus and a need for complete hormone regulation. Another problem is if the doctor was to leave in one cell from the tumor our son would have to undergo radiation therapy along with the radical surgery. We were frightened to say the least when we left the surgeon's office that afternoon. In all fairness, the doctor relayed to us that he was a believer in an aggressive approach when dealing with this type of brain tumor. That sparked a thought that there may be a conservative option opposed to the aggressive option. After seeking wise counsel, from several families that are strong in the faith we decided to pursue a second opinion from St. Jude Children's Research Hospital in Memphis, Tennessee. We read many of their studies and had discovered that they believed in a more conservative approach when dealing with Craniopharyngiomas. Unknown to us at the time, St. Jude deals with more Craniopharyngioma cases then any other hospital in the U.S., approximately 1 in 5 children diagnosed with Craniopharyngioma find their way to St. Jude. So, just what is the difference between St. Jude and Vanderbilt? The conservative approach would still have us do a craniotomy, but instead of the full resection a catheter would be placed inside of the tumor and it would be drained, which would relieve the pressure from the surrounding areas of the brain. After that, there would be a slew of tests that we are not fans of, a permanent catheter implanted in the brain, and finally a six week trip to Jacksonville, Florida to undergo proton therapy. Proton therapy is essentially a more effective form of radiation, but is still in the experimental phase. Tzadok's life after the conservative approach would be very similar to that of the aggressive approach in that he would be on hormone supplements for the remainder of his life, but he would most likely avoid the terrible diagnosis of Diabetic Insipidus. In either scenario, he has an 80% chance of survival, but heavy risks from surgery and/or radiation could have serious effects on his life following treatment. Again, the quality of life after the Craniopharyngioma is the concern. The location of this tumor is a problem because treating this tumor can ultimately cause many of the symptoms they hope to prevent through treatment. Needless to say, we have struggled with which option of treatment we will pursue because it's like choosing between terrible and bad. Neither one sounds good. We have went so far as to seek out a third treatment option called gamma radiation, which was even less appealing than the two previous choices. So, here is our dilemma two months after finding out that our son has a brain tumor. Aggressive or conservative? All we know for today, is that we are thankful for the prayers, counsel, financial blessings, words of encouragement, and mighty hand of our King and his faithful servants because without them the last several months would have been bleak indeed.