Daniel's overall health continued to improve after the surgery in New York, and he lead a very normal life considering all he'd gone through. 6 months after his surgery, he had an MRI. The MRI showed that some droplet pieces of tumor in his lower spinal cord appeared to be growing. The growth was minimal - Daniel's oncologist said he thought we should just continue to monitor it closely and wait. In the summer of 2003, Daniel was playing outside, riding bikes with his brother, Elijah. Wes had just come home for lunch, when Daniel walked into the house saying that he felt very weird, his stomach hurt, and he was having trouble walking. Wes and I looked at one another, obviously concerned. We told him to lie down on the couch. A few minutes later we came in to check on him and asked him to try getting up and walking around. He said, "I can't get up." Puzzled, we asked him why. He said, "My legs won't move." We quickly started to realize that something was very wrong. Daniel started to cry and said, "I don't know what's wrong, but I just can't move them, and I can't feel them either." Panic quickly set in.
Immediately, we sprung into action, carried him to the car, and headed for the emergency room at McMinnville Hospital. The ER staff brought him back to a room as quickly as possible. On the way to the hospital Wes called his sister, Karen, to let her know what was going on so she could mobilize the family to pray. It just so happened that Karen was at Doernbecher Hospital on the children's cancer floor visiting a child who was an inpatient there. It was the child's birthday that day and his parents threw a big party for him at the hospital. Karen said, "I need to let Dr. Nicholsen know what's going on ASAP. I will try to track him down."
By the time we arrived at the hospital, Karen had already tracked down Dr. Nicholsen. Dr. Nicholsen called the ER in McMinnville right after we arrived, and said, "Daniel is having a spinal cord stroke. You need to administer dexamethasone (a powerful steroid that immediately shrinks inflammation) STAT!" Within probably ten minutes of our arrival at the hospital, Daniel had been given a dexamethasone injection. The whole time leading up to this, Daniel was still unable to move his legs. But within minutes after receiving the injection, the feeling and movement in his legs started to return. Eventually, Daniel fully regained the ability to move his legs.
We were so struck by the serious nature of the situation and the way God had provided for Daniel's needs. If the medicine had been injected too late, the paralysis in Daniel's legs could have been permanent. Dr. Nicholsen wanted to see Daniel as soon as possible. We drove up to Doernbecher Hospital later that day, and Daniel was checked in as an inpatient. In the room right next to ours was a 12-year-old girl who was recovering from spinal cord tumor surgery - her second one, after it was discovered that her tumor had regrown. Her name was Maddie, and she was doing well. But her first surgery a few years before had not gone so well - it had left her unable to walk. Eventually with physical therapy, she regained some function in her legs and learned how to walk very short distances. Her most recent surgery (in 2003) was more successful - in large part because the neurosurgeons at Doernbecher had been brought up to speed on the advances and new technology involved in spinal cord tumor removal. It was refreshing to meet this family - the first one we'd met whose child had a spinal cord tumor, and very similar in pathology to Daniel's. We were able to share our experiences together. And when we returned home, we kept in close contact with them and and gave each other mutual support.
Daniel was given extremely high doses of the steroid. He had been on steroids before, be never on doses this high. Dr. Nicholsen wanted him to stay on this medication for several weeks. Once a person has been on high doses of steroids for an extended period of time, his/her adrenal glands begin to shut down. So the medication has to been stepped down in very small increments to give the adrenal glands a chance to start working again. In a short period of time, Daniel was so bloated and fat from the steroids, that he looked freakish. His face was so swollen, that it looked like a balloon about to pop at any moment. Everytime we'd go out in public (and we even went on a camping trip in the San Juans Islands later that summer), people could not help but stare at him. We would even hear people say things like, "Oh my gosh, did you see that kid?" It was extremely difficult for me to deal with- especially since under normal circumstances, Daniel was such an adorable kid. Fortunately, Daniel, being only 8 at the time, was mostly oblivious to the very odd way he looked and the way people stared at him. His normal appearance did return about 3 or 4 months later.
The high doses of steroids during this time are the reason why Daniel's growth has been so severely stunted. Powerful steroids drastically affect bone growth in children - the higher the steroid dose, the more that growth will be affected. Even if we had known this, there really was no other choice. As a parent with a sick child, I learned to be thankful for the little things, and to accept the setbacks. After all, this precious little boy who was not supposed live, was still here for us to hug, kiss and treasure.
Just a few months after this, we had another even scarier episode with Daniel that I will share in my next post.
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