India, Dr. Singh, and More Time in Hospital - Part Two

That same evening, Wes's sister, Karen had been in contact with Dr. Singh. Dr. Singh and his partner had been testing another form of the artimisinin compound - this one could be taken orally. They were seeing positive results. Dr. Singh told Karen he had some artimisinin capsules at his disposal, and we were welcome to have them. Karen and her husband, Brian, decided to drive up to the University of Washington in Seattle to pick them up for us. They drove to Seattle and back as quickly as possible, and by the time they returned, it was almost midnight, and we were already at Emanuel. There was just enough time to hand Wes a bag full of capsules through the sliding door entrance, before the hospital closed. We gave Daniel one of the capsules right away. One of the things Dr. Singh told us before Daniel started the artimisinin was to look for a fever. A fever could be an indication that the artimisinin was working. In the middle of the night at Emanuel, a nurse came in to take Daniel's vital signs, and she commented to us that Daniel had developed a sudden fever. Wes and I looked at one another in surprise - maybe the artimisinin was starting to work!

Another interesting thing happened that night - Daniel had been on morphine since his surgery in October. We were in the process of weaning him off, but morphine can not be stopped cold turkey without pretty severe withdrawals. At McMinnville Hospital, the ER doctors had given Daniel Tylenol for pain, not morphine - and this information had been sent along to Emanuel. They followed suit and continued giving Daniel Tylenol throughout the night.

Early the next morning, Daniel woke up and he looked like a different little boy! He was bright-eyed and alert...and even a little hungry! And there were no longer any outward symptoms of hydrocephalus. Later that morning, a doctor came in to speak with us. First he examined Daniel, and then he proceeded to tell us that a few different radiologists and doctors had taken a look at Daniel's CT scans that morning. Their consensus was that the hydrocephalus was not severe enough at this point to warrant shunt-placement surgery. He told us Daniel looked well enough to go home!

We sat there in shock and didn't know what to think! But as the morning progressed, we could see Daniel was clearly feeling better. It wasn't until the discharge papers came through, that we noticed Daniel had been off of morphine for over 12 hours. We didn't have a clear understanding at that time, but later we realized how the morphine was shutting Daniel down. It had largely been to blame for his decrease in appetite and energy. Daniel never went back on the morphine. We fought through about a week of pretty severe withdrawals, hallucinations, etc... (Daniel's hallucinations primarily involved the building of imaginary Legos :)).But that was nothing compared to what we were fighting against before. We also continued giving him the artimisinin, and saw great improvement in his stamina and pain levels. Over time, his pain levels decreased dramatically.

Earlier that year, we had given Wes's parents tickets for the Oregon Symphony's Gospel Christmas, and we purchased two for us as well. It turned out that concert was scheduled for December 20th. Daniel was admitted to Emanuel on December 19th, and then released on December 20th. We suddenly realized we'd be free to go with Wes's parents after all! We brought Daniel to Karen and Brian's house, and went shopping for some nice clothes to wear. While out shopping, Karen called to inform us that Daniel had just eaten an entire tuna sandwich. This was remarkable! We were filled with joy and relief. The concert was icing on the cake.

We stayed that night at Karen and Brian's. The next day, we drove home, opened up the door to our house, and our front room was literally filled to the brim with Christmas presents for everyone in our family! We later learned that the local hospice chooses one family every year to bless with Christmas presents, and that year they picked us!

Although, Daniel still had an uphill battle with cancer, we felt so thankful that Christmas to be together as a family, and we enjoyed every minute of it. Daniel was able to enjoy it as well, in between hallucinations! The story was still just beginning, but we entered a time of reprieve and renewed hope that lasted for several months. Grappling with the terminal nature of Daniel's illness became easier to bear once his pain, appetite and energy issues had improved.

That Christmas, many gifts and cards came in the mail, often from people we'd never met. One such card contained a verse of encouragement that I was not familiar with - it has since become one of my favorites:

"I remember my affliction and my wandering, the bitterness and gall....Yet this I call to mind and therefore I have hope: Because of the Lord's great love, we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness. I say to myself, "The Lord is my portion; therefore I will wait for him." Lamentations 3:19-24.