Daniel finished his chemotherapy regimen in early 2005. In 2005, we started noticing that Daniel's growth had slowed down considerably. His younger brother had passed him up in height. We took Daniel to an endocrinologist, a doctor who specializes in hormone disorders. The endocrinologist performed lots of tests on Daniel, but essentially there was nothing that could be done for him. Human growth hormone therapy was not an option, because this therapy potentially promotes tumor growth. Another therapy would have blocked the absorption of estrogen, which strengthens bones. Daniel's bones, because of the steroid use, were already too brittle. We were advised to just wait and hope for the best. In 2005, Daniel's growth was on the 5% curve. Since then, it has dropped down even lower and is not even on the curve. This issue has been a difficult one for us to deal with. We remind ourselves often that God must have plans for Daniel that are different than ours. Bigger. God is preparing Daniel to be a giant on the inside. Daniel's trials have given him spiritual depth and a wisdom and maturity of someone twice his age. We are blessed daily by the amazing character we see in him.
To rewind a little, Daniel had an MRI in mid-December 2007. I've mentioned before that MRI days are never fun, at all. But this day, I felt strangely calm and peaceful. The butterflies were not there like they usually are. The MRI was followed as usual by a consultation with Daniel's oncologist at Doernbecher. We sat in a tiny examination room - Wes, Daniel, and I, for about 45 minutes waiting for the doctor to come in. Our other children had come with us, but were watching a movie in the waiting room. We got so bored, that we started singing songs in that room. I'm sure the whole floor could hear us singing. Finally, the doctor walked in with a neurosurgeon. He proceeded to examine Daniel. His examination was more probing than usual. When he was finished, he looked at the neurosurgeon and said, "Well, he LOOKS okay." He started talking to us about the MRI almost immediately after examining Daniel, but his previous comment had already tipped me off. I knew that something was amiss.
He told us that the MRI revealed tumor growth in the cervical (neck) area. He called the neurosurgeon on the phone before meeting with us, and the neurosurgeon (Dr. Nathan Selden) had decided to come over. They discussed the findings before meeting with us, and had come to a consensus that another surgery was needed to remove this growth. Wes and I took the news in stride, without reacting strongly. We'd been down this road before, and although we were very disappointed, we still had confidence that God would bring Daniel through, once again. This time, Daniel was 12 and not 7 - a big difference. A child's level of understanding is much greater at 12 years old, but Daniel remained incredibly calm.
The first thing we did when we got home was send an email to Dr. George Jallo. Dr. Jallo had assisted Dr. Kothbauer during Daniel's tumor resection surgery in New York and had an equally high level of experience and expertise. Dr. Kothbauer had made the decision a few years earlier to take his neurosurgical expertise to Europe where it was very much needed, and he moved to Switzerland. Dr. Jallo had knowledge of Dr. Selden at Doernbecher. He placed a great deal of confidence in Dr. Selden's ability to perform a successful tumor resection surgery in the spinal cord. Hospitals around the country had made great strides in this field since Daniel's last surgery in 2002 - and so he advised us to have the surgery done in Portland this time.
We followed his advice, and made the decision to go with Dr. Selden. We met with Dr. Selden and he gave us some disconcerting news - each time the spinal cord is opened up, there is an exponentially greater risk for neurological damage, because the surgeon must cut through scar tissue from previous surgeries. This surgery would be less extensive than the one in New York, but at the same time, much more risky. He told us that the chances for paralysis, even death, were higher. We left the appointment feeling desperately aware of how much we needed to release our fears for Daniel's life and well-being, and place them in God's hands. The surgery was scheduled for December 31st, 2007, New Years Eve. So we made the decision to try and have the most wonderful Christmas possible before the big day arrived.