today's appointment didn't go quite as smoothly as we would have hoped.  when we've come out for appointments in the past, we have always brought a hard copy of the mri with us. in our very own hands. this time, when i called to request a copy, sanford said they had already sent it to duke. so I just left it at that. unfortunately, when we got to cody's appointment this morning, they had not yet received any of the images.

I know you're all thinking "a wasted trip" because initially that's what we thought too. but in reality it really wasn't and let me tell you why. duke physicians will not read any scans unless you are physically present in their clinic. if you want their opinion, you have to go see them. so today we saw them. they did their neuro exam and chatted with cody about new symptoms and what we've heard from mayo and our local oncologist.  the only part missing from today was their opinion. by being there today, we did "earn an mri reading."  we have to go home and fedex the scan to them and she will read it on wednesday and call us herself.

so any way you look at it, we had to make the trip. the only downfall is that we didn't get any results today and will have to wait until wednesday. and trust me, i know how hard the waiting is.

you guys. what an emotional roller coaster. the last two days have just proven, once again, that we literally live day to day, sometimes hour to hour. 

when we had our appointment in sioux falls, we were told that cody's mri had shown changes. we were referred back to mayo clinic and duke. within two days, we had an appointment in rochester. the neurosurgeon that had done both of cody's previous surgeries had looked at the images and felt surgery could be a likely option. however, he was out of the office until after the first of the year, so talked with one of his partners who saw cody on wednesday. it is difficult to determine exactly what they are seeing, because radiation and tumor look the same on an mri. from the surgeons standpoint, he felt a biopsy would be an option, so we would know with 100% certainty what the images were showing. but, he also wanted us to visit with the neuro-oncologist and get her perspective. they were able to squeeze cody in for an appointment the following day.  we found a place for lunch and checked ourselves into a hotel. we were devastated. cody was not ready for another surgery. he was hoping surgery would be off the table. as many of you know, i posted on facebook asking for prayers. looking at the images and talking to the surgeon, we couldn't believe how much it looked as if the tumor had grown in two short months. what an ugly disease.

today, we met a neuro-oncologist who did a full neuro exam on cody and walked us through the mri images giving us her perspective. anytime you do radiation, there is swelling and irritation in the brain. when you do radiation again (no matter how long in between) the brain remembers that and the swelling and irritation tend to be worse. so there is still a significant amount of swelling in cody's brain (likely causing the headaches). but as she continued to look at the images with us, she felt confident telling us that she thought what we were seeing was radiation effects, and NOT new tumor growth. say what? are you kidding me? of course, we can't know with 100% accuracy, but she felt 95% certain that we were looking at swelling and "ugliness" of the radiation. and did not feel surgery would be the way to go at this point. she shared her findings/recommendations with the surgeon. gave us recommendations for further treatment options. and we were out the door. with huge smiles on our faces.

what a difference less than 24 hours made. thank you for all of your thoughts and prayers.

we were also able to get an appointment into duke for monday. we are going to keep that appointment and get their opinion (praying it is the same opinion we heard today). we also need to discuss different treatment options with them, as the new medication mayo is recommending was something that would likely keep cody out of most trials at duke.

so, although this is still an ugly disease, it's not as ugly today as we thought it was yesterday. please pray for our sanity as we navigate through our day to days. and remember, don't forget to live for today as we are never promised tomorrow.

i'll cut straight to the chase. mri results today showed changes when compared to the last scan in october. although they are unclear of exactly what it could be, they of course are concerned with progression of tumor, which we know is likely the cause. our oncologist is sending the scans back to mayo and duke to see if they have any further insight as to what we are looking at.


possible options (based on oncologist in sioux falls):
-talk to surgeon and see if surgery is a reasonable option or can be done safely
-if not, what else can be done?
-possible clinical trial
-not jump to any conclusions, continue with chemo, and do another scan in 2 months


i know you have questions. i wish i had more information. the nurse will work on sending scans and making appointments tomorrow and we will wait to hear from her. i'm hoping questions we have can be answered as we move forward these next couple of weeks.


we feared this would be the case. i think we're past the days of going in and waiting for our good news. now, we just wait to hear what the changes are and where we go from here.

i'm changing things up a little bit. after my last couple posts (these posts have since been deleted) i received several negative comments through private messages.  i was confused and hurt and decided i wasn't up for blogging just to have people attack me for sharing my emotions. i have always said, i understand the fact that i am opening myself up for the world to see by having a public blog. the amount of viewers since cody's latest diagnosis has also surpassed anything we could have ever imagined.

for those of you who are coming to the blog strictly to find out information about cody and follow along with his health journey, i have re-opened his caringbridge page. you can find that by going to www.caringbridge.org/visit/codyfinke  i will post information regarding upcoming appointments, tests, results, etc.

but a friend from work convinced me i needed to continue the blog. for me. as a therapy for myself as well as having this time in our lives documented. so i've decided to let those comments go and not let a few people impact my decision whether or not to keep writing.

if you're here because you want in on the good, the bad, and the ugly of our family and our journey- then you're welcome to stay. if not, then i please ask that you visit caringbridge for updates.

so here's what's coming up tomorrow (the 14th):
cody has labs and an mri in the morning. we will then see the oncologist in the afternoon. i have high anxiety about this. cody has been having headaches, where they've increased his steroids again and put him on prescription pain pills. he's also been sleeping a lot. the tiredness we are hoping is due to the chemo, but we do have concerns with the headaches.

thank you for your continued thoughts and prayers. these last few weeks have been hard for me, as i enjoy blogging and have missed being here. i hope you can all understand this is a delicate time in our lives and sometimes i feel like the most delicate piece of crystal --where one small bump can cause the whole thing to shatter. please, handle with care.