Darkness

Soon it came time to make the trek back up to Portland for more consultations- first with the surgeon , then the oncologist. This turned out to be one of the darkest times in our lives. Daniel's oncologist had a perpetually "optimistic" demeanor and seemed nice enough, although we eventually came to discover a different side to her. During Daniel's first appointment she discussed with us, in her bouncy way, the need to start chemo and radiation very soon. Our first question to her was, "How is this going to help him?" and her response was, "We don't know for sure, but it may buy time and keep him alive longer than if you just did nothing." She went on to explain how the chemo regimen would be mild, as well as the side-effects, but that chemo in itself is not sufficient to stop the tumor growth - that radiation is the main component of brain/spinal cord tumor treatments. She told us our next step would be to visit with a radiation oncologist.

At this point, we started soaking up all the information we could, and keeping all options open. The time came for our consultation with the radiation oncologist. The days preceding this were very tough for us all- we had been trying to wean Daniel off of morphine and on to milder forms of pain relief - but without much success. On our trip up to Portland for the consultation, Daniel was extremely uncomfortable. It seemed he was either crying out in pain, or asleep. The terrible pain was sapping him of energy. When we arrived in Portland, we immediately started looking for a store to buy more pain reliever. We had to carry Daniel - he couldn't walk. When we finally got him to the appointment, he just laid on Wes's lap and slept. Both of us were already on the verge of tears.

The radiation oncologist was named Dr. Wynn. He was kind, and mild-mannered. He gave us a great deal of information during the appointment, but what stuck out to us the most was the amount of radiation Daniel would need, and the side effects. He said Daniel's type of cancer spreads easily througout the central nervous system - in fact spots of tumor had already shown up in his brain. So Daniel would need large-dose radiation to the brain and entire spine. He went on to list the side-effects: "mild" mental retardation, emotional retardation, and the bones of his spine and his head would stop growing. We were not expecting this. It felt like a punch in the stomach - especially after reading and researching alternative treatments that had no side-effects, and would only make him stronger. So Wes had some serious questions to ask Dr. Wynn. He told me to take Daniel out of the room. Although not present for the following conversation, Wes later related to me the essence of it. Wes asked him, "What is the survival rate with this kind of treatment?" Dr. Wynn replied, "Well, there is no survival rate for inoperable PNET's in the spinal cord. The treatment would buy him some time. Maybe a year or so, maybe less." Extremely distressed by his response, he then asked, "Dr. Wynn, if this were your son, what would you do? Would you proceed with treatment?" I credit Dr. Wynn for his honesty - "Your son has a fairly short time left on this earth. And the treatments are pretty brutal. I honestly don't know what I would do."

On the way home, we had to choke back the tears. We felt a tremendous burden - immense decisions about Daniel's life, health and future were placed on our shoulders. No one else could make them for us. But we took comfort in this: God is the author of Daniel's life - all his days were ordained by Him before one of them came to be (Psalm 139). We would seek His face, and He would help us. And he would never lead us astray.

We decided to start spending as much time as possible together as a family. Wes, fortunately, had months of sick time built up, and he stopped going to work. Every night, we had a slumber party in Daniel's bedroom - all of us. We would talk, and we would read a book together. We read "Swiss Family Robinson" - a book that we knew the boys would enjoy. And we prayed together - and we sang. Every night, I sang Daniel to sleep - every night the same song - "I Have a Maker."

I have a Maker
He formed my heart
Before even time began
My life was in His hands

I have a Father
He calls me His own
He'll never leave me
No matter where I go

He knows my name
He knows my every thought
He sees me when I fall
And He hears me when I call

That song isn't sung much anymore at church. But whenever it is sung, I always cry, and so does Daniel.