Simply Love

when we traveled to duke, we weren't really sure what we were hoping for. in our minds: if they could do nothing for him, that was a good thing...because then things weren't getting worse. if they did have something to offer, then it would have meant things were worse.  so although we had to travel 2500 miles, we were kind of hoping for no news.

an advantage that they have, because so highly specialized, is that they can pop in the mri and read it right in front of us. they don't have to wait for radiology or a report. we knew it was going to look rough due to radiation, and we were right. they say it could take a few months before they can really tell the difference between radiation effects/swelling and tumor. but they were confident they were not seeing new tumor growth.

i think we were all a little confused, what is duke actually doing for us?  after this last visit we think of it like this....cody is fortunate enough to be seeing some of the "best of the best" in brain tumor/brain cancer treatment. we think of them as the leaders in cody's treatment plan. they make the plan, and our local doctors will carry it out. they will see cody in their clinic every 2-4 months. unfortunately, the clinic is half way across the country. but cody made the comment "the only reason i'm coming out here (duke) is for when i'm laying in bed, sicker than hell, i won't have to question 'what if?' because that's a sucky question."  and that's exactly why we've chosen the preston robert tisch brain tumor center and will continue to travel as long as we need to.

some highlights of his appointment:
--long term use of steroids is not good. cody has been on steroids to help decrease swelling in the brain from radiation and to help control seizures. but he has been on too high of a dose for too long. they have given us a schedule to get him weaned off, very slowly.

--they tossed around the idea of using avastin to help with the swelling but decided against it. in the future, should cody be eligible for another trial, they typically look for people who have never had avastin in the past. so they are holding out and don't want to use up that option.

--get him started on his next round of chemo. each cycle is 28 days. he will take chemo for 5 days and then rest for 23 days. he is to have an mri every two cycles. his first mri should be scheduled in december. duke would typically like to see cody at this time, but also know we are traveling from minnesota. that first mri will be read at home. if everything looks ok we would not need to go back until the 2nd mri in mid february.

--the last thing addressed was cody's cognition. there is no question, when someone has something going on in their brain, there are going to be deficits somewhere. he has no motor deficits. he has no speech deficits. but we are noticing some slowing cognition, his frontal lobe functioning is not where it used to be. this might come back with time, it might not. we are to have him work on things that would be considered "cognitive exercises" every day. things such as word finds, crossword puzzles, sudoku, solitaire, etc.  his memory, concentration, and number skills are where we see it the most.  i have come to realize that i need to double check everything he is doing. i simply can't trust it or assume things have been handled the way they may have been in the past. this is difficult for me. for both of us. but these things are little. it's ok in the grand scheme of it all. again, we are so blessed for everything that has not been taken from him.