An MRI was performed right after Daniel's shunt placement surgery - his doctors needed answers as to why his hydrocephalus came on so suddenly. Daniel's original tumor began just below the brain stem and spanned all the way to the middle of his back. The portion of the tumor just below the brain stem was very bulky through the neck area and thinned down from there. Dr. Kothbauer removed the tumor to a great extent, but many of the tumor fragments remaining were in the neck (or cervical) area. The MRI performed after the shunt surgery showed that something was going on in that area of the spinal cord. It was difficult for the doctors and radiologist to determine what they were seeing. But the spinal cord in the neck area clearly was quite a bit larger and bulkier as compared to the previous MRI. Although a consensus was never made as to what had caused the hydrocephalus, there WAS a consensus by Daniel's doctors, including Dr. Kothbauer in New York, recommending chemotherapy at this point.
We started meeting regularly with Daniel's oncologist. The chemotherapy regimen recommended for Daniel was one established for slow-growing spinal cord and brain tumors. There were 4 or 5 drugs involved, and the dosages were relatively mild. The hardest part about it was the amount of time involved. It would take at least 15 months to complete the entire regimen, although when all was said and done, it took about 18 months. So we settled into a whole new routine - one involving regular trips to Doernbecher Hospital. During the course of the chemotherapy, Daniel went through a bout of adrenal failure, not related to the chemo directly, but to past steroid use, which caused him to throw up most of his food for about 2 weeks. He also needed sporadic red blood cell and platelet transfusions because of the chemo. However, the chemo drugs made him only mildly nauseous, and his hair didn't fall out. Each MRI performed during this time revealed shrinkage in the cervical area of the spinal cord - we were very thankful.
Daniel and I made almost weekly trips to Doernbecher in Portland. I tried to make each trip a fun experience for Daniel. We ate at his favorite restaurants and made frequent visits to Toys-R-Us. I look back on this time with fondness, and enjoyed all the time I got to spend with Daniel. He was so sweet and patient through it all and a blessing to everyone he came in contact with at the hospital.
One hot, summer day in 2004, I had taken my kids to a swimming area at a local river. On the way home, we stopped at a Dairy Queen drive-thru for some ice cream. In the drive-thru line, I asked Daniel what he would like. He responded, but it sounded like his words were coming out backwards and I could not make out what he was trying to tell me. We got through the line, and I parked the car. I asked Daniel what was wrong. He said, "I can't get my words to come out right." Thinking maybe he had tired himself out swimming, I told him to lay his head back and rest. But about halfway between Dairy Queen and home, I realized something was wrong. He tried talking but his words were making no sense. And he was clearly frightened. I called Wes and told him what was going on and that I was taking him to the Emergency Room.
Daniel came into the ER hardly able to talk, but within about 20 minutes or so, he regained his ability to speak. Later that day, we brought him up to Doernbecher and he was admitted. The doctors there determined that he had had a TIA, or mild stroke. Many tests were performed, including an EKG. Nothing had been lost during the stroke. He was very fortunate. Daniel had no more serious episodes after this. Another very scary event in Daniel's journey - yet he once again made it through without any permanent side-effects or damage. Praise the Lord.
Daniel eventually made it through chemo. It was a long 18 months for the entire family. We continued to home school. By the time Daniel started chemo, I was a pretty experienced and seasoned home school mom. I can not imagine how difficult these 18 months would have been on our family if all my kids had been enrolled in a regular school. Home school gave us tremendous flexibility and also allowed our whole family to focus our energies on taking care of Daniel's needs. Some days, all the kids did their school in the car on the long drives up to the hospital, Sometimes Brooke and Elijah did school at Grandma's house while Daniel did his at the hospital. But in some way or another, school always got done. And we were able to stick together as a family, while many families in that situation would have been forced to "divide and conquer." While our family and our children stayed close and strong, there were relational struggles. Our marriage took the hardest hit, and I will discuss that in a later post. But God is our Redeemer - He is in the business of Redeeming that which is broken and damaged. He preserved our relationship as a family, and He also redeemed our marriage from a deep, dark pit.
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