The Scariest Day of My Life

It was Sept. 9th, 2003, and Wes, the kids and I went to Pacific City, on the Oregon Coast. There is a huge sand dune on the beach there that our kids love to climb. Once they get to the top, they will run (or roll) all the way down. Daniel, normally able to keep up with his brother and sister, wasn't acting like himself. He seemed tired and said he didn't think he could climb the sand dune. Later, he complained of having a bad headache. Daniel made it through the day OK, but as soon as we got home, he went to bed.

Early the next morning, I heard Daniel moaning in his bedroom, in obvious pain. He said that his head hurt very bad. I talked with him and tried to comfort him. He had to get up to use the bathroom. As soon as he sat up he said he felt sick to his stomach. Within a minute or so, he was throwing up in the bathroom. By this point in our journey with Daniel, I had enough knowledge to be able to figure out what these symptoms most likely pointed to - hydrocephalus. I called Wes's sister, Karen, the "family" nurse. I told her my concerns and asked her if she thought we should take him into the hospital. She said yes. I called Doernbecher and talked with a nurse, who also agreed that he should be seen. Wes was at work, so I called him and he drove back home to be with us. On the ride up to Doernbecher, Daniel seemed to be in less pain. It is common for a person experiencing symptoms of hydrocephalus to feel some relief when sitting in an upright position.

We were told to bring Daniel to the oncology clinic inside the hospital. Once inside the clinic exam room, Daniel just wanted to lie down. I didn't think this was such a good idea. But being that he was very sleepy (another classic hydrocephalus symptom), we let him lie back on several pillows. A doctor came in (not Daniel's regular oncologist). We expressed our concerns. She said a CT scan would reveal whether or not he had hydrocephalus. A nurse came in to draw some blood, and proceeded to ask Daniel some questions. Daniel was awake - he tried to talk, but his words sounded garbled, and we couldn't make sense out of anything he said. The nurse didn't think much of it, but I knew something was very wrong. I looked her right in the eyes and said in a desperate tone of voice, "This is NOT normal. Something is going on!" She sauntered out to get the doctor. Wes and I were left in the room alone with Daniel for what seemed like an eternity. We tried to encourage Daniel to tell us what was going on, but his words weren't at all intelligible. Then right before the doctor came in, Daniel started screaming - it was the scream of intense suffering. Then, he started fading into unconsciousness. The doctor rushed in, and then Daniel completely lost consciousness. The doctor took his vitals. His heart was still beating, he was still breathing, but he just wasn't there anymore. He had sunk into a coma.

Immediately, everyone on the clinic floor mobilized around Daniel. A gurney was brought in. By this time, I was starting to go into a kind of paralyzing shock. I turned away from everything that was going on. I thought for sure Daniel was dying. Fortunately, Wes was there, and he took over. He told the doctors and nurses everything that had happened that day. He stayed with Daniel every second. Wes followed the doctors all the way into a different part of the hospital, holding Daniel's hand the whole way. I remained back in the clinic.. Eventually, Wes came back for me. He said that they were performing an emergency CT scan. Then we heard from the doctors what we had suspected - Daniel had severe hydrocephalus and was being taken into emergency surgery to have a temporary shunt put in.

I don't remember much between when Daniel was rolled out of clinic, until after the surgery was over. But I do clearly remember walking into the ICU. Daniel had a tube coming out of his head. The tube was connected to a plastic bag, which was already almost full of a yellowish liquid, Daniel's cerebral-spinal fluid. The surgeon came in and told us that Daniel's vital signs were good. They did say, however, that there was a chance some brain damage could have occurred - but we wouldn't know for sure until Daniel woke up. Eventually, Daniel started to regain consciousness. Wes's sister, Karen, had arrived at the hospital and was allowed to come into the room with us. The three of us stood hovering over Daniel as he started to wake up. Daniel looked up at us. Karen spoke up and said, "Hey there Daniel, do you know who this is?" Daniel non-chalantly replied, "Oh, Hi, Aunt Karen." We all smiled. Daniel was the same old Daniel. Thank you, Jesus.

Daniel went in for surgery the very next day, September 11th, to have a permanent shunt put in. He has that shunt still. This event kicked off a series of other events, that I will discuss in a later post.