Simply Love

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.