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

Our time at Disneyworld was spectacular, but back home in our world things were not going so well. We started seeing a rapid decline in Daniel's stamina and energy. Every day, it seemed he would eat less and less, and often he would throw up his food.

Wes was not working much at this time, but one day he dropped by his office at Water and Light. He walked past a newspaper laying on a table and an article caught his eye. Some research scientists at the University of Washington had discovered that a simple herb compound was being shown to slow the progression of breast cancer. The article went on to explain how an ingredient in wormwood, called artimisinin, can target and break down iron-hoarding cancer cells. Wes's sister is a registered nurse, and as soon as he could, Wes gave her a call. They both thought it would be a good idea to try and get in contact with the researchers. It took many tries, but eventually both Wes and his sister, Karen, were able to talk with one of the scientists - his name was Dr Singh, originally from India. He was very reluctant to help at first, since the treatment was experimental and the research ongoing. But eventually, he agreed to help, saying that he could not stop thinking about our poor little 6 year old boy who was dying and had no other options.

There was one major problem - artimisinin could not be obtained in the United States, only India. We didn't know how we were going to jump this huge hurdle. But Wes's friend, Jeff, had set up a website in order to keep friends and family informed of Daniel's condition. He posted an update about our discussions with Dr. Singh and the problem of obtaining the compound from India. Jeff's dad, John, is a retired pilot for Continental, with many connections in the airline industry. When he heard we needed this treatment and soon, he agreed to fly to India and get it for us! He flew there and back as quickly as possible, because we were desperate and running out of time. While in India, he stayed with some of Dr. Singh relatives. This act of love and sacrifice was hard for us to fathom. He said he actually had a good time doing it - and wanted no payment or reimbursement of any kind.

The artimisinin compound had to be injected into the veins. Wes's sister agreed to do it. I remember it was December 9th the day we drove up to Vancouver for the first injection. Daniel was very sick, and it was a difficult few days for everyone involved. Karen drove down to our house, also, to give him the shots. About 10 days passed, and we were not seeing any improvement.

On December 19th, Wes's sisters, Karen and Patty, drove down to visit. Patty had brought down a Vitamix along with some fruit, to see if we could get Daniel to drink some smoothies. But Daniel just wasn't hungry - his appetite had dwindled to almost nothing and he was throwing up a lot. We sat there visiting with one another - trying to find something positive to say. But we were all on the verge of tears. The situation seemed so inescapably bad. Later that night, Daniel couldn't stop throwing up and started complaining of bad headaches - two tell-tale symptoms of hydrocephalus. In the later evening, Wes and I decided it was time to take him into the ER. Wes took him, and I waited at home. Later that night, he called and said Daniel had been stabilized and was feeling a bit better, but the ER doctors thought he should be taken back to Emanuel hospital.

At Emanuel, he was admitted, and then given a CT scan. By this time, it was getting close to midnight. A doctor read the scans and eventually came in and spoke with us. He said, "Daniel has developed hydrocephalus - this is inevitable since the tumor is closing off the flow of cerebral spinal fluid back and forth between his brain and spinal cord. Fluid is building up in his brain. A shunt is required to drain the excess fluid. There are two options for you here - you could decide you would like to go ahead with shunt placement surgery, or you could just let him go and try to keep him as comfortable as possible. Either way, he will be gone soon."

Wes and I talked it over and decided to go ahead with the surgery. It was scheduled for the next morning. After the doctor left, Wes and I both lost our composure. It had been only 2 months (exactly) since Daniel's diagnosis, and we were not even close to being ready to let him go. Wes was so grieved, he could hardly walk. I remember he just crouched down on the floor and cried. Right at this moment, a lady walked in - an older African-American lady we had never met before, who had knowledge of our situation through a friend of my mother's. She had no idea what we had just heard from the doctor. She said, "I am here to pray for your son. You see, I believe that God wants me to tell you that your son has a great message to proclaim and a calling on his life - he is going to live." She proceeded to pray a wonderful prayer for him. We were enormously comforted by her prayer and her presence, but then she left, and we had to grapple once again with Daniel's grave situation. This sweet lady came and left and we have not seen her since that day.