Still In the Hospital

The day after Daniel's surgery, we were visited in ICU by Dr. Wehby. She had some very interesting news - the tumor diagnosis given the day before was wrong. During surgery, a slice of tumor was sent to OHSU hospital, and they sent a detailed report back to Emanuel. OHSU was calling it a primitive neuroectodermal tumor - medulloblastoma is another name for it. Because of this discrepancy, 2 more hospitals were being sent a tumor slice for their evaluation and opinion - Johns Hopkins and St. Jude. But for the time being, the diagnosis was changed from glioma to PNET (a short way of saying and writing the tumor name I mentioned above). We received the news with gladness, but Dr. Wehby informed us that PNET's are only slightly less aggressive. A PNET in the spinal cord is still inoperable, still ultimately fatal, but could possibly be responsive to chemo and radiation.

Daniel remained in ICU for 2 days altogether, and then moved to a regular room on the children's floor. The catheter was finally removed after it became clear to the doctors that he had lost no bladder function, but Daniel's post-surgical pain was difficult to manage. At this point, doctors and residents from many different specialities started coming by to speak to us and evaluate Daniel. These evaluations are extensive, the purpose being to check for any loss of nerve function, pressure and pain sensation, reflexes, motor coordination, etc... In spite of his pain, Daniel was put through the ringer by many doctors. To top it off, we were receiving visits now from cancer doctors - oncologists. They came to discuss the commencement of chemotherapy and radiation. The appointments would begin in earnest after Daniel had recovered from surgery. There was another important issue they discussed with us . On that Monday before his surgery, when Daniel was first admitted, he had been given dexamethasone, a very powerful steroid - the reason being to help with pain by reducing inflammation in the spinal cord, both before and after surgery. The doctor told us that very soon we would begin to notice the side effects of steroid use - severe weight gain, increased appetite, and irritability/aggressiveness. Sure enough, by the time Daniel was finally released, he had started to get very puffy around the face, chest and stomach, wanted to eat constantly and eat everything in sight, and became easily irritated.

As time went by his surgical pain improved a bit, but not much. He was given morphine after surgery. For reasons we still do not understand, Daniel's after-surgery recovery seemed almost non-existent. The pain was an ever-present reality for Daniel, and was only made manageable with powerful medication - morphine and its derivatives. The removal of the laminae during surgery was intended to keep the neck and back pain under control, but we saw very little evidence of this, at least in the first few months.

In our moments of privacy, Wes and I provided each other with as much comfort as we could. We read scripture together, prayed and tried to encourage one another. I grabbed ahold of 1 Peter, and read it over and over, as the theme woven through the entire book, is trials. I remember being strongly aware that the situation we were in, is where faith meets real life. I wanted my faith to be proven genuine, and to be demonstrated by my ability to believe and act upon God's Word. James 1:12 says, "Consider it pure joy, my brothers, whenever you face trials of many kinds, because the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything." How can a person understand the over-arching purpose of a child suffering from cancer? I still have a hard time understanding it. But at the time, I did know for certain this was a test of faith like no other - that trials are allowed for a reason and a purpose - and I wanted in my own life spiritual maturity and completeness. I found it interesting that long before this trial, I had a strong desire to memorize James and Philippians, and actually accomplished that goal - these two books of the Bible speak often of suffering and trials. All the words from these two books had been hidden in my heart - they had taken root and blossomed, and I went back and recited them contnually in my mind. Wes had been teaching God's Word for 10 years prior to Daniel's diagnosis. He also had the Word hidden in his heart, and a deep understanding, which proved extremely profitable to him.

Brooke had a birthday while Daniel was still in the hospital. We tried our best to celebrate with her - taking her out to eat and to the mall for a little shopping spree. Brooke and Elijah were very easy and sweet during this time - they could sense the stress we were under, and tried their hardest to be compliant, and as understanding as children of 9 and 4 could be.