December 2009 Update

Evan's last appointment in Seattle was on December 2. Brently, Evan and I all went over the day before as his appointment day at Children's Hospital consisted of 6 different appointments. It was a very long day and I am thankful that Brently was there to help me and keep me company.

The day started with an appointment at the Opthalmology Clinic at 9 a.m. for an Electroretinogram. This was to get a more accurate measure of Evan's vision. His exam entailed the doctor putting several electrodes on his head to get a reading when he looked at a screen for contrasting and I think, perefial (sp?) vision. This doctor did not talk alot of details but did say that he even doubted that Evan even had counting fingers vision in his left eye, if any vision at all. His right eye, as we found out later from the test results, showed that there are also concerns with his "good" eye. Either the tumor or his surgery from 2 1/2 yrs. ago has probably done permanent damage to his good eye. His acuity vision is about 20/30 but the contrasting and perefial (sp?) vision is almost non-existant.

Evan's 2nd appointment was with the opthalmologist where they dialated his eyes for more vision tests. The diagnosis was pretty much the same as was in August. The doctor would like to follow up with another electroretinogram the next time we return.

Evan's 3rd and 4th appointments was Radiology Anesthesia and his MRI. He wasn't real co-operative as he was so hungry. His MRI was at 11:30 and he wasn't able to have any food since 6:30 a.m. I am going to insist on a morning MRI the next time we have to do this. It took him a long time to wake up from the anesthesia, making him a bit late for his last two appointments. So, the nurses called the Neurosurgery Clinic to send someone down to where he was waking up from his MRI so that they could program his shunt. They have to do this every time he has an MRI.

Evan's last appointment was with his oncologist. He stated that there were not any significant changes that showed up on the MRI, so his recommendation would be to do another MRI in 6 months. But, he said that he would have to put this before the TUMOR BOARD and see if everyone was in agreement with this.

We left with pretty high spirits and headed home from Seattle.

On December 11 I received a phone call from the oncologist telling me that the TUMOR BOARD along with himself had a change of plans and wanted to get Evan in soon to start chemotherapy. I was totally not expecting this, so needless to say, I was in tears. It was explained to me that because of the concern of the bad results from the eye tests that something needed to be done.

So, here we are, today, waiting on things to get set up for another out-patient surgery for a port to be put in Evan's chest where they will be able to administer the chemotherapy as needed. Our hearts are heavy and we feel like our faith is weak.

We will try to keep better postings concerning Evan's appointments and such. Until then, we would truly appreciate your prayers, support, encouragement and hugs. We know that God has a plan, but right now, we don't have a clue what it really is. We thank God for each moment of each day we have been given.

Blessings,

David and Trena